“What Did the Sickness Make Your Brain Do?”

“What Did the Sickness Make Your Brain Do?”

sad woman with hand in head with redhead hair

by Sarah Sanderson

My daughter was six when I climbed into her bed and tried to explain psychosis. A few months earlier, I’d been hospitalized with postpartum psychosis after the birth of my fourth child. I was growing tired of dodging my eldest’s repeated questions about the whole experience, so this time, when she asked, “Why did you go to the hospital?” I decided to attempt a six-year-old version of the truth.

“Mommy had a sickness in her brain,” I replied as I pulled my daughter’s Disney Princess sheets up to my chin. “Some people get sick in other parts of their body, like when you have to throw up or when Jack broke his arm. Mommy just got sick in her brain.”

“What did the sickness make your brain do?” she persisted.

I wondered how much detail I would have to offer before she would be satisfied. “My brain just… made me think some things that weren’t true,” I tried.

“Like what?”

I had to have seen that coming.

I wanted to inform without scaring her. The part about the whole episode being triggered by memories of childhood sexual abuse was definitely out. My religious fixations probably wouldn’t make sense either. Was pressured speech—the compulsion to speak aloud every thought that comes into your head—too freaky? I settled on paranoia.

“Well… I was scared of the computer.”

Abby burst into giggles. No one had ever reacted to my story that way before. “What did you think it was going to do to you?” she laughed.

The truth was that I had convinced myself that my childhood abuser had somehow downloaded keystroke-capturing software onto our computer and could read everything I had ever typed. As my husband and a friend of ours led me towards the car to get me to the Emergency Room, I shouted, “Don’t turn on the computer until I get back and fix it! Promise me you will not turn on the computer!” It made sense at the time.

Now, I snuggled with my little girl and sighed. “I thought someone was watching me through the computer and I got scared.”

Abby laughed some more. “That’s silly, Mommy!”

“Well, it was silly, you’re right,” I agreed. “But at the hospital they gave me some medicine for my brain and now I’m okay.”

“And that’s why you stay in bed,” she pronounced, familiar with this part of the story.

“Yeah, because of the medicine,” I conceded. A side effect of my medication was that it knocked me out for ten hours at a stretch. I had always been the one to jump out of bed with whichever child woke up first, no matter how early or how little sleep I’d logged the night before. In the past months, however, my husband had shifted into the role of morning parent, because I was usually completely unconscious until after everyone else had eaten breakfast.

“How long will you have to take the medicine?” Abby asked. “If you went to the hospital and they made you better, why do you need medicine now?”

Good question. When I was released after four days on the psych ward, I met with a private psychiatrist for the first time in my life. She patiently explained that most women who experience postpartum psychosis also have, or subsequently receive, a diagnosis of bipolar disorder. At this, I revolted.

“No,” I explained to my new doctor, “I don’t have bipolar disorder. I’m fine. This was a one-time thing. It was triggered by all this sexual abuse stuff! I don’t have a mental illness!” The idea of me having a mental illness was just ridiculous.

The doctor agreed that I could possibly be in the minority, but I would have to take medication for at least eight months until the threat of manic relapse passed. After that, time would tell.

So as I lay in bed with my six-year-old daughter, still in the initial eight-month window after that first psychotic episode, I told my little girl, “I won’t have to take the medicine for very much longer.”

It turned out to be a promise I couldn’t keep. A few months later, in the process of weaning off the medication, I became manic, verging on psychotic, again. When I saw the psychiatrist back in her office afterwards, she confirmed what I now suspected: bipolar disorder had set in after all. Unlike postpartum psychosis, which is a one-time designation, a diagnosis of bipolar never goes away. I could now officially count myself among the chronically mentally ill.

Talking to kids about mental illness is like talking to kids about divorce, or sex, or any other uncomfortable subject: you have to do it over and over again. It comes up, and you answer their questions at their developmental level, and then a few weeks or months or years later, it comes up again, and your answers change.

As I grow more comfortable with my own diagnosis, I am learning to field these questions more adeptly. On some level, though, as I learn to see myself through the eyes of my children, I find that I am still working through my own feelings. Some part of me still can’t believe I’ve landed in this “mental illness” camp. What am I doing here? When will I get out? If I ignore it, will it go away? Each time I confront the issue with my children, each time I verbalize my explanations to them, I am explaining it to myself.

Recently, my third child, who is now six, started calling other people “crazy” in a derogatory way. For weeks, I kept hearing it and letting it slide, but it rankled me. I finally called him on it.
“We don’t use that word that way,” I informed him. “People have real sicknesses in their brain, and just like a sickness anywhere else in the body, they can’t help it. So we don’t use that word to make fun of people. It’s not nice to people with that kind of sickness.”

He stared at me quizzically. My heart thumped, and I recognized the feeling of shame coursing through my veins.

This child was two when I was hospitalized. We never had a snuggly moment of truth afterwards. He can’t remember me ever bouncing out of bed in the mornings. Maybe he doesn’t know I have a mental illness at all. Was I ready to reveal myself to him?

After a moment I decided now was as good a time as any to step out of the mental illness closet with this child.

“Like me,” I leveled with him. I braced myself for the barrage of questions that might follow.

But he didn’t ask. “Okay, Mom,” he shrugged, and ran out of the room.

We’ll talk about it again some other time.

Sarah Sanderson lives with her husband and four children in Oregon. Find more of her work at www.sarahlsanderson.com.

 

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A Brother Lost

A Brother Lost

Two children, male and female standing against the sun, sunset, romance

By Laura Richards

I was five and he was three. I stared at the tiny black and white photo of a sad little boy with pleading eyes standing on a metal folding chair, a number pinned to his sweater. “This is your new brother,” my mother said as her words trailed into the distance.

Life as I knew it was about to change forever.

I remember the long drive from Boston to JFK in New York and sleeping on a row of hard, molded plastic airport chairs waiting for the baby flight to arrive from Korea. I saw him for the first time from behind sitting on someone’s suitcase as chaos enveloped him. He stared in wonder at a soda fountain and popcorn popper at the Howard Johnson’s rest stop on our way home. Transition from poverty in another country to the bright lights, flash and color of the Western world seemed too much.

He smelled of kimchi and slept on the floor even though he had a bed. He called me “Uhn-nee” the Korean word for sister and refused to remove his clothing until one day my parents had to wrestle him down in the backyard and strip them off as I watched terrified from the kitchen window. To him new clothes meant a new home. My mother said he was the only child she ever knew who had corns on his feet because his shoes were too small.

Malnourished and wandering the streets of Seoul all alone, he had been shuffled to numerous placements in his brief life and all had sent him back. A child utterly rejected by every adult he’d ever known with an understandable inability to trust, living with the constant terror of being sent away again. Bone scans had to be done of his hands to determine his approximate age. He had no known date of birth so my parents used the day he stumbled off the plane and into our lives as his birthday.

It turns out that despite his rough start in life he was very bright to the point of gifted. He and I would sign up every summer at our branch library for the children’s reading program “Hooked on Books.” The librarians made fishing poles out of long dowels with brown yarn for the lines and cut up manila folders for the hooks. For every book we read we were given a colored paper fish to add to our hooks. The ones burnished with gold and silver paper were the most coveted as it meant you had reached the five, ten or even fifteen books read mark. Every summer my brother’s fishing pole was heavy with multicolored fish and multiple silver and gold because he was their star reader. Mine was flimsy with just a few colored fish blowing about as I wasn’t a prolific child reader. I was jealous of his ability and bountiful colored catch. Sure he outsmarted me academically but socially I had him beat.

As the years passed, it became more and more evident that something was very wrong with my brother. He didn’t connect in a normal way, had issues perspective taking and eventually became paranoid and combative. My parents did everything humanly possible to help him. He had plunged from being at the top of his class at a prominent private school in Boston to the depths of delusion, barricading himself in his bedroom and complaining that poisonous gas was being piped into our house. It was heartbreaking. He blamed all of his problems on a lasagna my mother had made years before. We tried to soothe him by explaining we had all eaten the same lasagna but reason had no place at his table.

It came as a tremendous relief when he was finally diagnosed in high school with paranoid schizophrenia after a complete collapse at yet another private school, this one a boarding school on Long Island. All of his therapists felt he would be better off outside of the family unit and though my parents weren’t particularly comfortable with the idea, they were desperate to help him so complied. It took one emergency room doctor mere minutes to figure out what a dozen others couldn’t over as many years. We were devastated by the diagnosis but grateful to finally have answers. For me it crystallized the tragedy and sadness of what could have been. A brilliant mind and promising life stolen forever.

He and I had a typical sibling relationship especially when we were younger. He drove me crazy teasing, imitating and barging in on me and my friends and I would chase him around the house and do all of the mean things that much taller, older sisters do to shorter, younger brothers. I would play Randy Newman’s song “Short People” as loud as possible on the record player with unrelenting glee. We built encampments in our back yard, slid down the sand pile at the DPW lot behind our house, incurred the understandable wrath of our mother when we used an entire roll of scotch tape on her wallpaper trying to keep our fort blanket in place. Of course it didn’t work and we ruined her wall (sorry mom). We would stay outside in the dark after a snowstorm making elaborate igloos and paths until we were beckoned inside by the bell my parents had affixed to our house. He was my playmate and partner in crime.

Eventually those typical sibling experiences were replaced by atypical experiences like visiting him in psychiatric hospitals. One night, I sat as he was restrained to a hard, flat bed by leather wrist and leg straps, his paranoia at its peak. At the very worst, and most terrifying, he became homeless for a while. The police needed a recent photo to officially declare him a missing person, a photo that I had taken just weeks before at his high school graduation. I will never forget driving to my parent’s house with it on the front seat beside me, stunned at the turn of events. His smiling face in cap and gown, my parents flanked either side of him smiling too, basking in a rare, happy day in a life that had been full of difficult ones. Things seemed to be looking up for him but my tears fell. Instead of seeing him enjoy his post high school summer with hopes of what might lie ahead we were filling out police forms and fearing the worst.

He eventually turned up but things were not good. While I was starting new jobs, dating, getting married, buying a home and building a family as a wife and mother, he was in and out of psychiatric hospitals and group homes unable to work and struggling to get through each day. I was getting on with the business of life while he was living in self-inflicted isolation and hating people for various reasons.

As a mom, I tend to take for granted the childhood memory-making happening under my nose every day. Events and funny stories that will eventually become humored and sentimental discussions around future holiday tables. My four boys will get to enjoy this but it’s something I can’t share with my own brother even when I try to jog his cluttered mind to remember what it was like for us. Only he knew about the untuned piano key in our Great Aunt’s parlor that sounded like an old fire engine bell. He knew what it was like to sit on a warm evening on the screened porch of our other Great Aunt and Uncle and watch “The Lawrence Welk Show” with the heat bugs in the background. He was there when I tried to shave my legs for the first time and badly cut my shin on my dad’s old metal razor. Things that only siblings share and reminisce about, not mourn.

He has better days but that little boy who shared and holds all of my childhood memories is lost forever within his illness. Holidays are particularly tough for him and therefore for us. He joins when he can but the voices distract and it often ends badly. Last Thanksgiving, he declared that we were all Nazis and he hated my food after eating three full plates of it. I’m grateful for the good moments when he chats with my sons or throws the ball with them in the backyard knowing it’s fleeting and he will soon be back to his stonewalling and paranoia.

When someone asks if I have any siblings it’s hard to answer and I often hesitate knowing the next question is inevitably, “What does he do for work?” or “Does he have a family?” or the truly dreaded question, “Are you close?” How do I answer or explain? I often reply, “Yes, a brother who is mentally ill and lives in a group home.” That usually abruptly ends the conversation yet saves a series of future awkward questions. Sometimes it starts a conversation that they too have an aunt, grandparent or cousin who suffers from depression or bipolar and I’m glad. Glad to know we can talk about such things and that I’m not alone and it’s not just our family struggling so deeply with mental illness.

My relationship with my brother is now limited to the occasional email always signed, “your brother” followed by his name as if he’s reminding both of us of his place. That he is a brother, my brother. I’d like more but it’s just not in the cards. He has no sense of boundaries with the phone and visiting isn’t something he’s comfortable with. I love him but it’s hard. He’s a hard person to love.

Laura Richards is a Boston-based writer and mother of four boys including identical twins. She has written for a variety of publications including Woman’s Day, Good Housekeeping, U.S. News & World Report, Redbook, The Boston Globe Magazine and Scary Mommy and can be found on Twitter @ModMothering and via her website www.LauraRichards.co.

 

 

 

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Her Canvas, My Son

Her Canvas, My Son

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By Terry Cox-Joseph

His eyes, blue to ocean’s depth, stare from canvas, perfect brush strokes with perfect white highlights, perfect lashes, innocence, precocity. I wish I had painted that portrait.

The artist’s brushstrokes kiss the canvas the way I kiss my son’s forehead as he sleeps. She strokes the canvas the way I stroke his hair, caress his cheek.

My son is real. He is mine. He is flawed, something deep within his brain, axons miscommunicating, frontal lobes overworked, chemicals too high or too low. It has taken years for us to teach him not to hit when he’s mad, not to kick holes in the walls, not to spit. He has no buffer for impulse control, no “stop” button. We have hired tutors to teach him at home what he should have learned in school. Still, on many days, he comes home with a notebook blank as his stare.

Her canvas depicts a fantasy child. She gave away the real child, she told me once, sent him back to some institutional cement world. Who would hold him, I wondered? Who would caress his forehead? Who would love him? How could she do that?

As much as I have hated my son, I have loved him. From the moment I first saw him held in his birthmother’s arms, bundled in hospital green and white, a silly, warm, hand-knit cap pulled over his brow, I wanted him. The weight of him in my arms, the softness of his black hair, the tight grip of his fists that defined him. My husband, our daughter, and now, our son. Our family was complete.

The artist’s adopted son lit matches, dropped them on her carpet, lied, covered his lies with lies. Just like my son. He lit matches behind the couch, then dropped them on the wood floor in panic. He lit them in his room, too. Our therapist suggested sitting on the lawn with a bucketful of water and 1,000 matches and making our son light them until he was fed up with it. He only made it to 85 before my husband called it a day, satisfied that this was a lesson learned.

The other artist dismissed him after he rifled her purse for coins. My son went through my purse, too, when he was 14. I learned to hide my purse, even while I was sleeping. But he snuck behind my bed, behind the headboard. He stole my credit card. Stealth seemed wired into his movements. He bought online gaming points. Before that bill arrived, he slid the credit card from my purse not three feet away while I was sprinkling ginger on chicken stir fry. Amazing, his sleight of hand, sense of timing. He shocked us with his audacity, lack of boundaries, ability to thieve without remorse. Once the credit card was cancelled, he figured out how to use his cell phone to buy gaming points. I didn’t know you could do that.

If only he had directed this ingenuity toward school work.

When we disassembled the computer, he smashed two chairs and nearly shattered my eardrums. My heart had already been broken. Only the hope that this was an addiction held me to him. Surely, he hadn’t stolen out of malice. We could make it through this, too.

Her son lied to make her hate him, to prove he was unlovable, proved she couldn’t love him, proved he was a discard, proved he was right, couldn’t, shouldn’t love anyone because all people were liars, he was just one more liar, anyone who told you they loved you was a liar so why tell the truth to anyone? Lying is survival.

Clinically, it’s called Reactive Attachment Disorder (RAD). I call it mental illness and a bruised heart. I call it a process. I have no idea if my son has RAD. I think he’s got Asperger’s and a mood disorder, definitely anxiety issues that send him rocketing past the ozone layer if he senses too much emotional pressure, too much homework, too harsh lights, too much sound, too many transitions. How many times have I slammed on the brakes when he has kicked the back of my seat during a tantrum, cracked my favorite CDs, pulled my hair in the middle of an intersection? How many times have I wanted to open the car door and throw him out right there?

Black markers streak foul words across my son’s walls, X’d out sentences replaced with exclamation marks, wrestlers’ names, and football scores. They mar the pale blue clouds that I once papered his room with in the fantasy world I prepared. There are holes bashed into drywall that my husband I and deliberately never repaired to prove a point, if anyone remembers what the point was the day our son threw a toy truck through the wall. We never repaired the screen, either, the day he whaled a baseball through the inside of the window, shattered the glass into glittering reminders of chaos.

My canvas is never blank. It is never complete. My brushes harden in dried linseed oil and turpentine because I’m checking the toothpaste on my son’s toothbrush, making sure he’s reached those back molars instead of lying and smearing toothpaste on his front teeth with his finger and then reassuring me by exhaling in my face. I check to see if he has scrubbed his face, taken his medicine, sprayed bleach on the mattress to mask the odor of urine for the millionth time. I check his closet for the smell of urine, worried that he may have awakened in the middle of the night again and confused it with the bathroom.

I remind him to put sheets on the bed, turn out the light, and wonder if he’ll plead, “cuddle,” so I have an excuse to snuggle next to his warm back, rub his shoulders, rest my cheek against his neck as his breath keeps pace with the crickets chirping outside. Or if this time, he’ll inexplicably rage, kick me in the jaw as I bend down to kiss him, scream “GET OUT!”

He wonders why I haven’t painted him as much as I have painted his sister, who poses for the camera naturally, chooses perfect lighting that brightens her hair like spun gold, who tilts her shoulder just so, bends to pluck a daffodil, knowing that hers is a world of beauty and charm, and everyone in her orbit is captured by it. I tell him that he won’t sit still long enough to be photographed, won’t sit still to pose for the canvas, scowls when I suggest a pose. I don’t want to paint scowls. I tell him that he broke my last camera, stepped on my canvas in the back of the car, threw my paint across the room. He doesn’t understand the connection.

I have taken pictures of him climbing trees. Exploring the yard in his diapers. Climbing on all fours inside a fiberglass turtle at a children’s museum. I will save these for reference and paint these canvases when he’s grown, when he’s in school, when he’s got a girlfriend, when my paints are inventoried and fresh and my canvases are stacked neatly against the wall. I will paint him when he has grown into another world, the world of order and reason, and even if he hasn’t, the world that someday slots time into compartments, chunks of time that I can claim for my own. Because without this belief, without this goal, I cannot make it through the day. There must be a “someday.”

I will paint him with an overbaked smile, wearing a Hawaiian straw hat, face so close to the camera that he leaves nose prints. I will paint him with wild, loose strokes, shouting colors, globs of paint, because a calm, blue-eyed little boy, staring wistfully through a rain drenched window is not who he is, and I wouldn’t want to paint a stranger.

He is mine, and like an unfinished canvas, I will complete this task. Not all paintings are pure joy. Not all are effortless. I have problems with perspective, and occasionally stumble with foreshortening. But I can always come back to it with a fresh eye, a good night’s sleep and a full stomach.

Imagining my son in some faceless institution is too painful to bear. A hospital stay, yes. A special needs camp, absolutely. But to send him back, to open the fluffy New Parent Package with such desire and fervor and love, and then slam shut the lid and send him back is unfathomable. Therapists, teachers, parents, doctors are part of our team. My husband and I could not do it alone. My son cannot do it alone. But together, we can.

The other artist spews accusations with disgust, fires words like paint splatters: “He stole from my purse!” I asked her if she’d taken classes on adopting older children, if she’s heard of RAD.

“No. What difference would it make? I will not put up with that.”

I feel my heart snap shut on her, just as she closed hers toward her son. There is a finality, a certainty I feel, knowing that while being an artist defines me, I am not solely defined by it. It is one of many roles. I am more than that. I will not be satisfied with less. I will not turn my back on an unfinished canvas. I will study it, learn from it, correct it and in the end, I will take joy in it.

Some paintings are perfect. Some are hyper-realistic, traditional, each stroke so perfectly placed, so studied, so measured, it is like a photograph. The light falls perfectly, the angles are measured with precision. But some paintings are fraught with stress tempered by freedom, a tension of line, juxtaposition of secondary or tertiary color that otherwise would not have occurred in a traditional piece. That is where my artwork differs. My canvasses may never be as perfect as hers, but they will be painted from the heart, yanked from my soul, squeezed fresh from the tube and the palette with vigor and resolve. Where she craves perfection, I crave depth. If I have to, I will dig my fingernails into cadmium red, cobalt blue, viridian and sienna, and smear them where they need to go.

Let the artist keep her perfect portraits. Mine are messier. They are real.

Author’s Note: Raising my daughter was so easy. My son, however, is the proverbial square peg in a round hole, but with strapped on explosives.  Writing and art are my outlets. “What do other mothers DO when they’re at the end of their ropes?” asked an artist friend. I don’t know. But my son is now 19 and no longer lives at home. Take a deep breath and enjoy. 

Terry Cox-Joseph’s essays, articles and poetry have been published in Dog Fancy,  Entrepreneur, and Virginia Builder, among others.

Art: Mary Ann Cooper

 

 

My Mother and I

My Mother and I

Summer children and happy family concept. Mother and daughter little girl in heart shaped sunglasses, having picnic playing in park outdoors.

By Charley Karchin

I adored my mom the way a child loves their favorite superhero. When I was in elementary school she volunteered to chaperone every field trip. One trip, our last field trip of 5th grade, she was the chaperone of my group – four of my closest friends and me. We took a charter bus with multicolored seat cushions and tiny little TVs that they never played movies on to The Franklin Institute in Philadelphia. She let us enjoy it the way we wanted to. This meant; we spent loads of time in the sports science room seeing how fast we could throw a baseball, or spent all the money we had on dehydrated astronaut ice cream and silly putty from the gift shop.

She ran with us from exhibit to exhibit, laughing and playing just like we were. She told our teacher we were well behaved, even if we got a warning from the staff. I always had fun with my mother.

Within weeks of watching her laughing at me tripping over one of my friends and falling into a staff person, she was in her bedroom, screaming and crying. She was gasping for air and rolling about on top of her covers. My grandmother held on to her with the help of another person. They yelled over her screams, telling her to take deep breaths. She didn’t listen and continued to thrash, kicking my grandmother in the legs. My mom pulled at her own hair, tearing strands of knotted blonde from her scalp. Her eyes never connected with mine but I could see that hers were red. My grandmother turned from my mom to shoo me from the room. When I woke up the next morning my mom was gone.

While my mom was being given meds to take and puzzles to do in the psychiatric unit I lived at my grandmother’s house. Every day when I got out of school we would visit my mom.

She wore starched blue pajamas with the name of the hospital printed on the chest pocket. Everyone there did. While the front desk checked us in for visiting hours she’d wait for us through a glass window on the locked metal door. Inside, Mom walked me around to show me to the friends and crafts that she made out of tongue depressors and crayons. Some of her friends came up and pinched my cheeks,

“Oh! What a beautiful girl, Deb!” or something similar to which my mom said, “Say thank you, Crystal.”

How was I supposed to talk while a stranger had half of my face pinched between their fingers?

But, my mom wasn’t screaming or crying anymore. So I smiled, and so did she.

Each time my mom came back from the hospital she was different from before. She didn’t want to chaperone anymore. She didn’t want to play games with me. She didn’t want to watch movies or hear what I did that day while I was out with my new middle school friends.

She dated. She brought home men of all types that she met on dating sites. One was closer to my age of 15, another was wanted in 4 states, and one had us move in with him because he wanted to be closer to me. She only smiled when she was with them.

We fought often, then. In high school, the fight would start while she was in the living room sitting on my deceased grandfather’s favorite green upholstered chair. She had the legs kicked up and her laptop perched on her thighs, playing an online version of scrabble on the Internet. She began playing games online after one of her relationships ended in a cancelled engagement. She could sit all day and all night on the computer. I entered the room one afternoon and asked her to play a game with me.

“Mom. Do you want to play Nintendo with me tonight?” I asked, “We almost beat it.”

She didn’t take her eyes of the computer, but she sighed and grumbled a bit in her throat.

“Crystal, not right now. I’m busy.”

I wasn’t going to let her just brush me off like that, so I asked,

“Okay. Well, when? When the time runs out on that game?”

She still didn’t take her eyes off the screen but nodded and agreed.

When I returned hours later she was still playing. I knew she ignored her promise. I yelled and told her that I only wanted to spend time with her. She yelled back and said that I wanted too much from her. Many of the times we fought she cried and said, “If I’m such a terrible mother, go find another one.” For the remaining three years of high school, I only tried to do an activity with my mom once every few months. Our longest conversations were one sentence long, “Crystal, walk the dog,” Or “Mom. I’m home.”

I was eighteen when my mom began working again after over ten years living off of disability. She was a cashier at a hardware store to supplement her disability checks. Within only a few weeks of starting she was helping with managerial duties. At home she wasn’t playing on the computer as much and, instead, started watching TV in her rare free time. As a way to try and spend time with her, I tried to watch them with her.

I learned that my mom likes terrible TV. She likes the kind where groups of people get put together to compete in some game or competition to win a grand prize. She liked having an opinion about the contestants. She began to look different. She gained weight and it was very hard to get along with her but she almost glowed.

She turned on the singing competition.

“It’s the last four,” she said to me. The intro played showing the names and faces of each the contestants. As each one flashed by she gave me her opinion. She pointed and grinned, and looked at me for my reaction.

“Look at his hair! He’s hot.”

“She has a really pretty voice. The judges like her.”

Or

“I think he is going to win. You like him. Right, Crystal?”

She sang along to the songs she knew, and if I knew them, I joined in too. She closed her eyes and I could see the deep crows feet around them. She tilted her face towards the ceiling and let out a painfully off-key version of the song. The lamp lit up the blonde hair that draped around her shoulders and she looked so happy. I tried to match her volume and sang with her. When I got to see her joy, I could clearly see her pain.

I watched her withdraw into Scrabble when her relationships failed. I watched her not eat for weeks just because she ‘didn’t feel like it’. I felt how hard it was for her to get to where she was. She still didn’t want to do any of the things I remembered her doing when I was a kid, and we couldn’t spend more than 3 hours together without fighting. But, I watched her go to work every day. I watched her buy things like groceries with money from a paycheck.

We grew up together. I could see it in her eyes how hard life had been on her. I noticed that, even when she was at her worst she was trying her hardest. She accepted her single parent status, took all of its consequences and found a way to stand up on her own.

Author’s Note: It took me a long time to write this story because I couldn’t make sense of my relationship with my mom. I was worried that she would be upset with me for writing it, but she cried and told me she loved me.

Charley Karchin was born in Queens, New York, and raised in the Lehigh Valley, Pennsylvania. In her familial relationships she has taken the role of teacher, friend, daughter and supporter. She is currently a writing student in Boston who works with developmentally disabled adults.

 

Celebrating Their Birthday

Celebrating Their Birthday

By Kelly Burch

theirbirthday

My father was my sadness, and my daughter was my light. 

 

My daughter’s first birthday—my father’s 52nd—was celebrated in the psych ward. There was no candle, and a nurse held the knife used to cut the cake. I had to call and plead in order for the baby to be allowed to visit my father, speaking first with a nurse and then with the unit manager. Normally, children aren’t allowed beyond the locked doors that mark the start of the psychiatric wing.

“Please,” I begged. “It’s their birthday. Both of them.”

My father was my sadness, and my daughter was my light. I couldn’t celebrate the joy of her first year without thinking about the deep sorrow that year had held for my father. I couldn’t bear to celebrate another melancholy birthday with my dad, or find hope for his future, without the healing balm of my baby’s smile. After all, without the baby, we may all be forced to confront the lunacy of singing “Happy Birthday” to a man currently hospitalized for depression.

  *   *   *

The morning that my daughter was born, I awoke in the hospital with the OB-GYN by my bedside.

“The induction hasn’t taken,” he said. “But your blood pressure has stabilized. We’ve consulted with Boston, and they said we can send you home, or we can try Pitocin. We’ll let you decide.”

Frustrated but still hoping for a somewhat natural delivery, I waddled out of the hospital without a baby.

“Sorry Dad, not today,” I said as I called to wish him a happy birthday. Even through my own exhaustion I could hear the disappointment in his voice.

But on the drive home, I began feeling the rhythmic tightening in my stomach that had failed to happen during my three days in the hospital. My water broke right around the time I was supposed to be going to my dad’s birthday gathering.

“Going back to the hospital. Don’t tell anyone at the party,” I texted my mom. We had already had one false alarm, and there was no need for everyone to come running.

But a first-time grandmother can’t control herself, and the cake and ice cream were left abandoned as my siblings and parents rushed from the cook-out. After holding out all weekend, my daughter came so quickly that I didn’t even know my family had arrived, waiting just on the other side of the locked doors that separated the maternity ward from the rest of the hospital.

When my family came in to meet the baby, my father was the last through the door, his hulking frame looking timid and unsure.

“Happy Birthday,” I said.

As I watched him cradle his first grandchild, I hoped that the baby would make a difference. I wondered if a 7-pound infant was the key that could break into the icy depression that had held my father captive for eight years, correcting his chemical imbalance and bringing him back to me.

At the same time, even in my postpartum haze, I knew not to expect a miracle. Just weeks before giving birth, I was downstairs, in the hospital’s Emergency Room with my dad. As I swayed my ever-widening hips in an attempt to soothe my aching back, I listened as the nurse asked my father, “Do you take drugs?” and “Are you thinking about hurting yourself or others?”

Hospitalizations were something I had been through many times with my father’s bipolar disorder. But at eight months pregnant, this felt different. As I helped him through the E.R., hoping that he would be deemed sick enough to warrant one of the few beds reserved for psychiatric patients, I felt completely drained. That night I curled myself around my belly, wondering how the baby inside would remember my dad.

Long before I had children, I mourned that they would never meet the boisterous, gregarious man who raised me. They wouldn’t know the man who ran for mayor on a whim; the man who always had the next big idea, and was ready to shout it from the rooftops; the man who was apt to scoop up his nieces and nephews, tossing them too high into the air until they were consumed by laughter and their parents exchanged nervous glances.

That man had been snatched away from me by mental illness. I loved the sullen, subdued person left in his place, but I was heartbroken that my kids would not know the same version of my father who helped me discover creativity, and taught me to buck the norm. The poet and author who gave me my greatest joy—writing.

But as I looked at my father holding the baby on the day she was born, I had hope. I saw genuine joy radiating from him for the first time in nearly a decade. My daughter, swaddled loosely in the hospital blanket, nuzzled into my father’s bright coral shirt, a garment too cheery for the man who was wearing it. The massive man with paunchy cheeks, who was clean-shaven and showered only because he knew his family was visiting for his birthday, looked down at the baby with awe.

These two souls were connected, entering the world on the very same day, half a century apart. They were linked through me, but also independent of me, with a relationship I would never be fully privy to.

The year that I was expecting, I celebrated my birthday at 38 weeks pregnant. “Maybe she’ll be your birthday present!” people would say. Although I smiled, I hoped the baby would leave that day for me.

However, when I thought about her sharing my dad’s birthday, two weeks after mine, it just seemed right. Through the foggy years of his depression, I visited him on his birthday and tried to make my rendition of “Happy Birthday” sound as genuine as I could. But it seemed hollow and insincere to sing of happiness to a person who couldn’t find any joy at all.

For years, I repeated the ritual and the saying, but I knew he wouldn’t have a happy birthday, and wasn’t likely to have many happy days in the coming year.

But then, that day became theirs.

“I was hoping she would come on my birthday,” he had said when he met the baby.

He hadn’t expressed hope in the longest time.

Author’s Note: My daughter is nearly two now. After being hospitalized on her first birthday, my father began doing better. He is currently on his longest stretch without a hospitalization in nearly a decade.

Kelly Burch is a freelance writer and editor living in New Hampshire. She shares stories about mental health, mothering, and anything else that catches her interest. Connect with Kelly on Facebook, or via her website to read more of her work.

Disbelief, Suspended

Disbelief, Suspended

images-4By Kelly Garriott Waite

Evenings, just prior to giving each of the three door handles (one front, two back) a final twist and firm tug, to reassure myself that the deadbolts were engaged, I would unplug the coffee pot. As I slipped into bed, my mind would flash with what ifs and are you sures, images of fires and robbers swirling around my head. In order to relieve my brain, I would repeat this procedure, tiptoeing down the stairs so as not to disturb my parents who’d since gone to their room to read and, for my father, to smoke the night’s last cigarette. I’d hear the click as Dad flipped open his silver lighter, hear him thumb the spark wheel against flint. I’d get a hint of butane and know from the faintest sound of burning the precise instant when the end of Dad’s cigarette caught.

Sometimes – not often, for I had learned to be silent – Dad called out after he snapped the lighter shut and inhaled deeply. What was I doing out of bed? I would claim I needed a glass of water, in the kitchen going through the motions of turning on the faucet, the running water blanketing the sound of my checking the back doors one more (quietly twisting, quietly tugging – already I knew that there was something unacceptable about my behavior) before giving the coffee pot plug a glance. Often this wasn’t enough. I would have to pass a hand directly in front of the outlet: Perhaps there was an invisible connection between plug and socket that my eyes had not seen.

After, I would sneak into the den and grab my father’s overflowing ashtray, take it to the kitchen, and turn the faucet on again, watching the cigarettes bob in the rising water. Just before heading up the stairs, I’d give the front door another check, just in case.

Back in bed, I hoped to fall asleep quickly so that my mind wouldn’t force me downstairs before breakfast. If I did have to rise again, my checking turned violent: I would yank each of the door handles and wave the plug before my eyes. Sometimes I would run my thumb against the prongs, stab them against my hand. Here was visual, tangible proof that the coffee pot was unplugged, although sometimes even that wasn’t enough to make me believe.

Growing up, I was uncertain about religion: My mother was Catholic, my father a lapsed Protestant. My sisters and I were raised with a foot in each tradition, a situation that left me divided and confused. But I did learn to pray. At night, I’d repeat Now I Lay Me Down to Sleep, an awful prayer – die before I wake? – probably taught to me by well-meaning Sunday School teachers. I prayed as well that the house wouldn’t burn; that the robbers wouldn’t come; that my mind would detach itself from its ever-present worrying. Then I would blink up at the dark ceiling, thinking about the endless black wave I imagined eternity to be.

***

Shortly after my brother’s birth, my mother nearly died. For days after she’d returned home, somewhat slimmer and with a squalling infant on her arm, Mom complained of a neck ache. The slightest breeze sent her into spasms of pain. She spent hours in our living room, resting her head upon the green card table normally reserved for bridge night. My sisters and I learned to tiptoe. We learned to whisper. We learned how to help care for an infant. I remember watching The Life and Times of Grizzly Adams on television, holding a bottle to my brother’s mouth. As I lifted him to my shoulder to pat his tiny back, my mother turned her head to look at me: You’re going to make a good mother someday.

In the evening of the day that my mother nearly died, my father gathered my sisters and me around him on the couch in the family room while my brother slept blissfully unaware in his bassinet. We almost lost her today. My father swiped at his eyes. It was – and is – the only time I can recall seeing him cry.

***

Before I turned twelve, I’d convinced myself I had breast cancer, mistaking normally-developing tissue for a lump. I stole the Better Homes & Gardens Family Medical Guide from the den’s bookshelves, reading, under Concerns of Women, about my surgical options. Later, I flipped through my sister’s biology textbook. It showed a breast in the late stages of cancer. For years, I believed I was ill, but I told no one, of course, imagining my slow demise, the horrible disfigurement of my breast eaten away by cancer, and the goodbye note I would write and clutch in my dying hands: I knew it all along. I consoled myself, thanks to Billy Joel, that if I must die young, at least I knew that I was good and so would go to heaven. For years I carried around the fear of breast cancer until it suddenly dawned on me that if I had had the disease, it would have killed me by now.

Every other week, Dad would drop my sisters and me off at the Hilltop Christian Church where we attended Sunday school and then church on our own. I remember newsprint paper and broken crayons. I remember the teacher’s cheeks tinged with pink when she got to the seventh commandment. That’s for adults, she said.

On alternate Sundays, my sisters and I attended St. Joseph Catholic Church with our mother. This, of course, was not church. It was Mass. And the priest (not the minister, nor the pastor) didn’t give a sermon. That long mind-wandering period during which a man stood rambling at the front of the church was called a homily. I remember cushioned kneelers covered in red vinyl. I remember missals with thin yellowed pages. I remember incense and holy water and colorful light slanting through stained glass windows, tinting my legs blue and red, yellow and orang.

***

After deciding our house was too small for the six of us, my parents bought forty acres of land. We cut down trees and hauled brush. We stacked logs and peed behind the tool shed while our house was being built. We celebrated small victories with takeout chicken dinners, sitting on the plywood floor of the future kitchen of our future home. We worked the land. We made a farm.

We planted a massive garden, too much food for our family to consume: peas, carrots, zucchini and green beans. My mother learned to make strawberry jam, her daughters stirring the pot with a long-handled wooden spoon, hoping to avoid the inevitable splatters. We baled hay. We rode horses. We kept cows and pigs and chickens, whose shit-littered eggs we stole from beneath their warm white breasts every morning.

We walked in the woods, easily jumping across Silver Creek to explore the junk pile, until the beavers moved in, dammed the creek, and made a home of their own.

For a time, my sisters and I exclusively attended a local Disciples of Christ church, my mother having fallen away from the faith of her birth. But after a time, we, too, divorced ourselves from religion. Work and nature had become our altar.

***

Obsessions don’t just disappear. They metastasize. As soon as my cancer worry was under control, a new fixation began to torment me: Before getting out of bed, I promised myself I wouldn’t overeat that day. But I always did, had already imagined, while still beneath the covers, what I would eat first. A breakfast of sugared cereal, topped with creamy Jif peanut butter and Half and Half, eaten, of course, in secrecy, was immediately followed by a snack: More peanut butter, smeared so thickly on a piece of toast that I could see the imprint of my two front teeth where I’d bitten. I would eat without tasting: A dozen Pop-Tarts, whose empty boxes I would hide until I could safely get rid of the evidence; candy bars from the video store where I worked – I ate so many in a day that I lost track and would stuff the cash register with a handful of singles and hope it was enough; the ten-pound block of Nestlé chocolate my mother kept in the pantry for baking, from which I would hack away hunks with an orange-handled ice pick. After cramming myself with thousands of calories, I was full of shame.

I tracked my food intake, the day’s list always beginning with promise: Puffed Wheat with milk, plum, tea, glasses water, 4. Then cookies, 2 appeared on my list, which suddenly came to an abrupt end. A squiggle appeared across the leftover portion of the day’s page, accompanied by the damning word: binge.

I tracked my measurements, tracked my exercises: jogged 10 minutes with weights on trampoline; 100 jumping jacks; 107 jump rope (not straight). I promised myself a subscription to Shape Magazine, even Glamour if I could reach 125 pounds. I regularly wrote in my journal that I would be totally happy if I were thin, yet happiness eluded me.

I discovered that with Chocolate Ex-Lax, I could eat as much as I wanted and lose weight. I discovered that cigarettes could curb my appetite. I started cooking gourmet dinners for my family and internally criticized them for so openly enjoying food.

Food became my religion. Shame my constant companion.

***

After eight years of farming, my sisters and I gradually lost interest. We sought boyfriends. Independence. Cars. Whenever I drove home from work, or school, or shopping, I’d have to double back to where I’d just been, so certain was I that I’d run someone over. As the miles passed beneath my tires, I’d check the rear view mirror, picturing body parts strewn about, people standing in the street, hands pressed to cheeks, round mouths around horrible screams. A mile would pass. Two. Five. Even ten. My mind, in this mode, was ungrounded, like a bratty toddler having one hell of a temper tantrum, wailing and kicking the ground, demanding that it got its way. Eventually, I would give in to it, turning around in someone’s driveway, my mind circling as I scanned the road for signs of trauma that I knew I’d never find. Through the windshield, I resentfully watched pedestrians going about their business, jogging, shopping, eating ice cream cones. How could they behave so normally when inside I was falling to pieces?

I kept silent about my driving obsession. There was no easy way to bring it up: Sorry I’m late. I thought I ran somebody over. And there wasn’t a lump. There was no fever. There was, in short, nothing tangible to offer up as proof. Having nothing to poke or prod, nothing to press down upon, I certainly could not be ill.

Eventually, I learned to reason my way out of this driving issue, in the same way I’d reasoned my way out of my cancer fear: I forced myself to drive further…further…further, my mind screaming all the while: Stop!Turnthecararound!Danger! My hands shook. My eyes watered as ten miles stretched to fifteen, then twenty. But then, my stomach would fill with the heavy knowing that the irrational side of my mind was about to take over. I was frustrated and angry and so sick of myself and my stupid life.

Yet I learned to fight back, telling myself that I had not heard a thump or a scream, that I had not felt a lump beneath my tires. I promised myself that I would watch the evening news and if there had been a report of a hit and run, I would surrender myself to the authorities.

***

Before marrying, I told my future husband I would convert to Catholicism. Religion was important to him. I was kind of half-Catholic anyway, I reasoned, even if I hadn’t been to church in years. I wanted our future children to have one faith. I wanted us to attend church as a family.

At the Easter Vigil, after months of Tuesday night lessons, I was baptized and confirmed and received the Holy Eucharist for the first time, according to the Catholic Church, although my mother had baptized me at home and I’d taken the bread and wine regularly with the Protestants.

My husband and I bought an eighty-year-old house for seventy-nine thousand dollars. Three tiny bedrooms upstairs. One small bathroom. A living room with a hole in the floor and a hideous brown fireplace. There was a dining room with a built-in bench and fabric wall paper. A kitchen with bright yellow tiles, easily dislodged by an incautious tread.

***

After the birth of my eldest, I thought I had schizophrenia. While my colicky newborn screamed every day from 3 until 6, I put her in her stroller and wheeled her endlessly around the dining room table or sat on the built-in bench, holding her close, praying that she would stop screaming, just for a moment. One day, a clear voice whispered to me: Kill her.

I hadn’t heard of postpartum depression, still wasn’t clear on how to handle my obsessions. I told no one but my husband. I thought that if I sought professional help, my daughter would be taken away from me forever. But I should have remembered the intrusive thoughts I’d had for years.

Sometimes a voice would tell me to drive up on the sidewalk into a crowd of people. I’d grip the steering wheel tightly, press on the brakes, fight the voice inside my head. Sometimes I’d look at a complete stranger, just a sideways glance, and a thought would fill my head: He deserves to go to hell. It didn’t matter if the person was man or woman, child or adult, black or white. My mind chose random targets to mentally condemn. I was a horrible person. I was a sinner. I deserved go to go hell. No they deserved to go to hell. No, I…Back and forth, my rational mind would argue with its irrational partner until my brain felt as if it would explode. But to have such thoughts about my child…I promised myself I’d commit suicide before I harmed my daughter.

I didn’t know the Catholic Church’s stance on this action, killing oneself to avoid harming another. I didn’t care. I would gladly burn in hell to save this infant.

***

Before my daughters — by now we had two — could get up from their morning naps, I would sweep the floors of the entire house, afraid, if I didn’t, that the girls would get lead poisoning. When I ended in the kitchen, thinking about a cup of coffee and a few moments of reading, I’d tell myself I’d missed a spot and would have to head back upstairs to restart the process. Again and again, while my children slept, I swept those floors, hating myself, hating my brain, wishing for once in my Goddamn life to be a normal human being.

I used to throw away entire meals, so convinced was I that I’d somehow contaminated it with shards of glass or a splash of bleach.

I used to take my daughters’ temperatures. Every. Single. Night.

My husband and I enrolled our daughters in Catholic school at the very church I had attended with my mother and sisters. I continued to wrestle with my new set of beliefs. I confess I have sometimes wondered whether the words of a prophet were actually spoken by a madman, if an angel’s visitation was actually a hallucination.

***

After we tucked her into bed, my older daughter slipped into the bathroom to wipe down the toilet seat with a tissue. If she didn’t, she knew that a mean man would come through her bedroom window. Every night, she would rid her room of pointy objects and frightening books. She would call down the stairs: Will I be all right? Will anything bad happen? Are the doors locked?

My daughter dealt with her obsessions by constantly seeking reassurances. I gave her what she wanted: A mean man isn’t coming. You’re not having a heart attack.

For a while she was content with this response. Then the obsessions began demanding more. After each reassurance, she sought proof: How do you know?

I just do, I told her. It’s like faith. My own faith was on shaky ground. But still, I told her this. I offered her faith to give her some sort of hope when life felt hopeless.

***

Before she was in kindergarten, my younger daughter began confessing things: I stuck my middle finger up, which she immediately chased with, Well, I might have. I’m not sure. Later, she developed a strange noise, a high-pitched snort, which she would deploy with regularity. A tic of sorts, my husband and I figured.

Eventually the tic disappeared. My daughter stopped making her confessions. My husband and I concluded that she’d outgrown whatever it was that had been troubling her. We didn’t then know she’d learned to be silent, too.

Because I didn’t tell my daughters I suffered from mental disorders. I told myself that my obsessive behaviors stemmed from growing up in an alcoholic home; that the girls were too young to understand; that if I kept silent, if I didn’t name it, mental illness would bypass them. I told myself, too, I was a bad mother. Sometimes–often–I still do.

Faith and OCD. Both powerful. Both mysteries, one of the brain, the other of the soul.

***

Obsessions are a set of rules for behavior, different for each person: for me, checking the coffee pot, for one daughter, wiping down the toilet, for the other, making confessions. These rules represent an attempt to gain control over our uncontrollable, uncertain world. Christianity, I’d been taught, also has rules which, if we follow, increase our chances of getting to heaven. Life doesn’t actually end when we die.

But reaching that security requires two different paths. The best way for me to work through obsessions was to learn to apply my rational brain to them. I had to look for proof, or lack thereof: Had I heard a thump? No. A scream? No. Had my tires lifted off the ground? No. Only then could I conclude that I’d probably not run anyone over. Faith, however, required suspension of rational brain: I couldn’t see Jesus in the disk cradled in my palm, didn’t see a flash from the sky as He came down from heaven, but I had to accept that He was there. It was a mystery. There could be no proof.

Obsessions and faith and rationality and mystery and those damned intrusive thoughts that grip the brain. Perhaps, like faith, obsessions require a person to go beyond mere rationalizing. Perhaps both faith and OCD require a person to accept the unknowns, without reassurances; without certainties. Will the house catch on fire? Probably not, but a definite possibility. Does God exist? I can offer no proof. And yet, there is always hope.

Now, when I leave Starbucks where I’ve been writing, I have to return to my table to see if I’ve left anything behind: my computer, my notes, the cell phone I know is in the pocket of my jeans. Clearly, I have not exorcized my obsessions. But their grip has lessened somewhat: I don’t unplug the coffee pot before heading to bed. I no longer drive around the block to see if I’ve run someone over.

I used to hope to become the person I was before obsessions crowded my brain. But I am not certain she ever existed. Perhaps I have always been the person I have, for so many years, tried to escape. Perhaps I have always been the after person. And that’s OK. I have learned to accept the mystery that is my brain. I am learning not to be silent about my history of mental illness. Ever so slowly, I am learning how to speak.

Author’s Note: Six weeks ago my father was diagnosed with cancer. He died this morning. My dad passed on to me his love of hard work. Half of my faith. My respect for nature. He gave me his obsessions, too. The funny thing is, we never talked about it. He suffered in silence. I suffered in silence. Isn’t it time we all started talking?

Kelly Garriott Waite’s work has appeared in the Christian Science Monitor, the Globe and Mail, the Philadelphia Inquirer, and elsewhere. She is currently writing about her search for the stories of both her great-grandfather, who immigrated from Russian-owned Poland, as well as the forgotten owner of her historical Ohio home, an English immigrant who married into a Native American family.

Intolerable

Intolerable

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At my son Carter’s last visit with his psychiatrist, he answered all of Dr. S’s usual questions: Was he sleeping? How was his mood? Did he see or hear anything that other people didn’t?

He answered her and as always filled in the gaps in conversation with chatter about his hobbies and his dogs. He told Dr. S about plans for his 13th birthday the following weekend, launching into an extensive list of the gifts he hoped to receive, but Dr. S has known Carter for a long time and has learned how to interrupt him gently to get the information she needs. At the end of the appointment, she ran Carter through a brief neurological exam (all normal), ordered labs (standard), and said, “Well, it seems like you’re doing really well, dude. I think you can come back in three months.”

Carter whooped. “Three months! Yes! Mom, can I have your phone?” and he charged out of Dr. S’s office and down the hall while he tapped at the phone screen, trying to connect to any family member so he could spread the good news.

I smiled at Dr. S, saying, “He’s never gone three months before.”

Dr. S returned my smile with her gentle one and said, “He’s come a long way.”

Once in the car, Carter called my dad, my mom, his own dad, then his dad’s mom. I don’t think any of the people he called were clear on what Carter was telling them, but they understood his excitement and congratulated him.

Elated as he was, I’m not sure even Carter understands how momentous this is. It’s true that he’s never gone three months between visits with Dr. S, and that Dr. S has been his psychiatrist for seven years, but what he doesn’t remember is that he’s never gone three months in his life without seeing at least one doctor. There were months when he saw multiple doctors and weeks when he had three or more appointments. There were days in his first six years when I drove him to more than one appointment as we tried to identify the causes of his frequent vomiting episodes, his sleeplessness, and his unrelenting terror. Later, there were weeks when I spoke to Dr. S every single day as we struggled to keep Carter out of the hospital and safe while he rocketed between suicidal depression and overwhelming mania.

I remember those years in the haziest of ways and if I didn’t have files overflowing with reports and assessments from doctors, psychologists, and schools, plus my own journal and blog entries, my memory would make everything smaller, more manageable. Carter screamed like a child afire almost from birth. He was beset by physical and emotional challenges whose causes we wouldn’t begin to understand for years, and the fear and sleeplessness we endured came within a breath of killing me and destroying our family. Carter suffered, and I suffered with him.

My primary occupation during that time was wishing. I wished that my child was well. I wished, if he couldn’t be well, that whatever was wrong was something visible and easy to identify so someone would name it and ease his suffering. I wished the unbearable and dangerous lives we were living would either improve or end because I couldn’t imagine continuing on for years as we were living then. I lost any hope I’d had that things would ever be better.

There is a suffering worse than one’s own, and that is to see one’s child suffer and be unable to help. When Carter was overwhelmed by rage or anxiety; when he was moaning over the pain of a migraine; when he was begging me to kill him or trying to throw himself from the car on the freeway; when he was screaming all the way to school from terror; when he clung to my neck and begged me to make him feel better; when he lashed out at me and demanded I let him kill himself; in every traumatic and terrifying moment I prayed God, put this in me. Take it out of him and put it in me and give my little boy life. The human heart can break, and break again, and again, and again, and eventually there descends a kind of numbness, which is a horror in itself because it seems to indicate the death of one’s empathy.

Eventually, we landed in the office of a developmental pediatrician who heard my concerns and understood the gravity of our situation. He prescribed medication to help Carter sleep and I am not speaking hyperbolically when I say that he saved our lives with those little pink pills. By the summer he turned six, it was apparent that Carter needed a higher level of care than a developmental pediatrician could provide and we were transferred into the capable hands of Dr. S.

The worst (please, I beg, let it have been the worst) was still ahead of us, but we have never since then been alone. Now that Carter has been relatively stable for several years, I have had some time to recover, and although I have a hard time remembering those impossibly difficult years, I know they changed me. I don’t recognize pre-2002 Adrienne. I am stronger in some places than I was then, and irredeemably broken in others. I’ve been refined by fire.

My family lives now with a tenuousness I couldn’t have borne before. When people ask me what I think the future holds, I can only shrug. Carter may live with us at home, or he might be killed by police who don’t understand his behavior and interpret it as aggressive. He might hold a job and live in a group home or he might take his own life, as so many people with his diagnosis do. He could stay fairly stable for the rest of his life, or he could go off his medicine and become acutely psychotic, maybe going to prison for some crime committed when he doesn’t know what he’s doing. I can’t predict and I don’t try. I do my best, in each day, to help Carter experience success and find some joy. That has to be enough.

Photo: Matt Benson/Unsplash

Teetering

Teetering

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My 12-year-old son, his pediatric psychiatrist, my husband, and I recently embarked upon a project known in mental health circles as a med change. Every person with mental illness, and every caregiver of same, shudders at that two-word phrase. A med change is always undertaken with hopes of some kind of improvement (in my son Carter’s case, we hoped for decreased side-effects), but med change usually makes things worse before it makes things better.

The psychiatrist, Dr. S., and I decided we would accomplish the med change via a process called cross titration, meaning we would slowly introduce a new antipsychotic medicine as we gradually decreased the old one, in hopes we could avoid a reappearance of the monstrous and terrifying symptoms the old drug has kept (mostly) in abeyance for three years.

Carter was a grudging participant in the whole process. He remains traumatized by the years when his mental illness was acutely symptomatic. Moreover, he tends to impart talismanic power to his medicine, overestimating their role in his stability and underestimating his own hard work in learning and applying skills that help him cope with his challenges. Unfortunately, the particular side effect we were trying to alleviate is a serious one, and just like a parent who must buckle a screaming baby into the car seat he hates, we adults were forced to take the long view and make a change Carter resisted.

Just like the phrase med change sends a shudder up the spine of every person who has, or loves someone who has, mental illness, we also carry the terrible knowledge of the dreadful inadequacy of our mental health care system, of the knife blade we are always teetering upon. My son’s pediatric psychiatrist is brilliant and kind. She strikes exactly the right balance between respecting the gravity of my son’s illness, and also respecting the dangers of the medications she prescribes to control that illness. Together, we seek to give him the minimum effective number and dose of medicines.

With that goal in mind, when Carter and I arrived for an appointment with Dr. S. two weeks ago, we decided to continue reducing the old medicine, and keep the new medicine at the starting dose. He had tolerated the change quite well up to that point, and his dose of the old medicine had dwindled to almost nothing, so we decided to find out if the small dose of the new medicine would be enough. After all, if it didn’t work, we could always call Dr. S. and make a quick adjustment.

Enter a confluence of five potentially disastrous factors, namely Carter’s sudden and rising instability; the holidays and difficulty contacting Dr. S; the practice of medicine by checklist and cover-your-ass reactivity; my pervasive naïveté about the value of sharing all available information; and one stranger.

It went like so: I called Dr. S. She, under the time constraints of her large caseload and the imminent holidays, had one of the physician’s assistants in the university clinic where Carter sees her for appointments, triage her phone calls. When the PA called me, she said, “The notes from the receptionist say you want to increase one of Carter’s medications. Why is that?”

And I, lulled into false confidence in this stranger because she was acting as emissary to our beloved Dr. S., told her everything, including what Carter had told me a few days before about wishing he would die, but being too afraid of pain and blood to do anything to cause his own death.

Does that sound like a crisis that requires immediate action on the part of a team of highly skilled medical professionals? Does it seem reckless and appalling that, instead of rushing my child into the arms of doctors and nurses, I sat with Carter for an hour, listening to him yell and cry, then helped him into the shower for a hot soak before I gave him his medicine and sat with him until he fell asleep? Probably. Except that a visit to the ER for a psychiatric emergency is not like going to the ER for other medical problems.

I have seen things in psychiatric ERs that should curl anyone’s toes, both when I took my own child for evaluation and when I have accompanied friends whose children were in crisis. I went with my friend, whose child was diagnosed with schizoaffective disorder by leading pediatric psychiatrists and psychologists at a prestigious medical center after extensive evaluation and who was at the time acutely psychotic, to the ER, only to hear the nurse (who had spent ten minutes with her child) tell her that all her daughter’s problems were due to lack of discipline. I saw another friend walk out of the ER, defeated, after the staff told her to give her son a double dose of Benadryl to make him sleep. He had, that afternoon, tried to choke his baby brother in his crib while my friend brushed her teeth. My husband and I took Carter to the ER after he spent 9 hours helplessly cycling between paranoid rage and suicidal depression from which we could not calm him. When we finally saw a doctor, he scolded us for waiting as long as we had to see the outpatient psychiatrist, when in fact we were in month 3 of the 4 month wait that every new patient endured from the moment of first contact with the outpatient clinic until the time of the first appointment. We were sent home with instructions to give Benadryl for sleep and to keep our appointment at the outpatient clinic 4 weeks hence.

Don’t misunderstand. There are times when the ER is the only appropriate place to go, and there are times when the ER is helpful and even life saving, but based on our experiences, it is a solution of last resort.

So it was that when I spoke to the PA and informed her of the things my son had said about wishing to be dead, and she told me that I must take him to the ER immediately, I balked. I was horrified at the idea of subjecting my scared and fragile son to the staff of the ER, who are sometimes very kind but often brusque and even cruel. I am also cognizant of the criteria for psychiatric admission. Here in New Mexico, where psychiatric beds are extremely scarce, no one gets a bed who is not obviously and gravely ill, and sometimes even then people are sent home.

When I resisted the idea of taking my son to the ER, the PA informed me that she was a mandated reporter, meaning that a report to the child protection division of the Department of Health and Human Services would be in order if I did not “take my son’s health seriously” (her words) and act immediately.

I hung up the phone and tried to decide which would be more traumatic for my son: a visit to the ER, or a visit from CPS, which could result in a forced visit to the ER? Either way, we would be wasting resources, taking time away from some other child whose parents could not keep him or her safe at home. Either way, my son would not be hospitalized. Either way, my son would have to hear me lay out a list of symptoms, behaviors, and plans for protection that he is loathe to explore with strangers. Either way, we would lose.

My husband and I decided to stay loose and wait for a call from Dr. S. I paced the house, phone in hand, and silently raged at a system of care that is so callous. I am my son’s mother, except not quite. When I decide that my son is safe at home, any medical professional with whom I speak may decide that I am wrong and invite an official investigation of my capacity as a parent. When I decide that my son is not safe at home, the system of psychiatric care in my community may decide that whether he’s safe or not, I must keep him home and hope for the best.

Dr. S. called me back, and she, the doctor who knows my son, who knows my family, who knows how many locks we have in our house and how willing I am to stay up all night and supervise Carter if that is what’s necessary to keep him safe, called in the needed medicines to our pharmacy. She made clear that the decision to go to the ER or not lay with me and my husband, and that there would be a doctor on call at the clinic while she was on vacation. She could have called me back much sooner if there was not a dangerous shortage of psychiatric care providers and her caseload was more reasonable. We could avoid so much heartache if we took mental health care as seriously as we do cardiac and orthopedic and almost every other kind of care.

And imagine, if you will, the families out there, thousands of them, who have no Dr. S. Imagine standing on the knife edge with no one to catch you on either side. Imagine.

 

Photo by Scott Boruchov

Why My Son Doesn’t Know He’s Mentally Ill

Why My Son Doesn’t Know He’s Mentally Ill

Mental Illness Cloud-1

Language is powerful, and the longer I can protect my son from some of the hurtful language I hear everyday, the better.

 

There was a moment, during a recent panel discussion for parents of children with special needs, when I panicked because my son does not know all the official names of his diagnoses.

During that moment, one parent said that she had not yet told her young son the names of the things that made him different from most other kids, and another parent scolded, saying, “Children know when they’re different. You have to tell your child now.” I felt cold for a moment, because I am a person who hears scolding and takes it into myself even when it is neither pointed at me nor true.

Outside of that moment when I doubted myself briefly (and so many other moments, because raising a child with severe mental illness and intellectual disability is even more baffling than raising a child who is developing typically), I am confident I have given my son the language he needs to speak of his unusual experiences of the world. He can speak of having a hard time with his feelings, of using strategies and needing help from people and medicine to manage them. He talks about how learning takes extra time and how he needs his special school where he gets to work at his own pace and the teachers are very patient with him. He knows that sometimes, he sees, hears, feels, and believes things that other people don’t, and that when reality gets slippery this way, he needs to talk to his psychiatrist and psychologist because this is a medical problem, and he needs help to put reality back where it belongs.

Words he does not know apply to him: mentally ill, bipolar, psychotic.

The first problem is the casual use of words for psychiatric diagnoses that we hear all the time. Moody or unpredictable people are referred to as bipolar. Angry people who act like jerks are called psychotic or psycho. Nations are said to have schizophrenic relationships with other nations. Spree killers are proclaimed to be mentally ill before we know anything about them, sometimes even their names.

Then, there’s the news. Oh, the news. In the US, we speak far too rarely about the crisis in our mental health care system, but when we do, talking heads refer to The Mentally Ill as if they were some massive, homogenous group of people whose needs we must meet lest they shoot us all. In fact, people with mental illness are all around us, dealing with challenges that range from very mild to profound, and our obligation to help them meet their needs for treatment have almost everything to do with being decent people and only a tiny bit with preventing violence.

Finally there are the depictions of people with mental illness in entertainment. Recently, the ABC sitcom Modern Family featured an episode in which the character Claire made a haunted house whose theme was “scary insane asylum” all for viewers’ amusement, and all based on the assumption that people with mental illness are not real people, and they certainly aren’t at home on a Wednesday evening, watching TV. We see again and again in media the same tired tropes: the psycho, the schizo, the madman, the crazed animal, the lunatic, the monster.

I can’t bear for my son to see himself reflected in any of this, so we speak instead of difficulties, challenges, and issues. He knows that everyone has difficulties, and that his specific difficulties are of a sort that requires help from doctors. He knows there was an accident in his brain before he was born and that it makes some things harder for him. Most importantly, he knows that his difficulties are not the most important things about him. His humor, generosity, gentleness, and curiosity are much more interesting than the ways his brain sometimes misfires.

I’m probably protecting myself as much as I’m protecting him. He doesn’t remember the rage he experienced in 2009 that lasted over 10 hours, and during the first hour of which I peeled him off a smaller child who he was trying to choke to death. I don’t want him to catch the evening news after another mass shooting and wonder, as I do, could that be our future? Am I watching myself ten years from now? What will they say about him, about us, about our family?

My son does not deserve to be afraid of himself. He doesn’t deserve to see ridiculous, cartoonish caricatures of people with the same diagnoses he has. He doesn’t deserve to live a life that’s shrouded in stigma around an illness he has because a freak accident damaged his brain before his birth. He doesn’t deserve to live in fear that he won’t be able to access necessary medical treatment because in the US, we have flat refused to prioritize treatment for people who have illnesses whose symptoms manifest in thoughts, moods, and behaviors.

Because of all that, my son doesn’t know he is mentally ill. He doesn’t know that his doctors write the words “bipolar with psychotic features” under his name when they communicate with each other or our insurance company. It’s not because we’re pretending that he’s a typically developing child and everything is fine; it’s because language is powerful, and the longer I can protect my son from some of the hurtful language I hear everyday, the better.

 

Illustrations by Christine Juneau

Grandma’s Secret

Grandma’s Secret

mother and children making cookiesby Kate Washington

When she was three, my daughter Lucy was interested in many things: fairies, swimming, “Call Me Maybe,” ice cream, the alphabet, families, death. The last two interests led her to asking questions about my mother, who died when Lucy was a baby.

“Mama,” she said, “Who is your mama?” She asked this fairly often, since learning that Grandpa is my father but his wife is not my mother. My mother was missing.

“My mama was Maga,” I said, using the name Lucy’s older sister Nora invented when she couldn’t pronounce Grandma. “You’ve seen pictures.”

“Your mama is dead?”

“Yes.”

“Why is she dead?”

I sighed. “She was sick and her body couldn’t keep working and she died,” I answered, leaving out the fact that my mother’s death was a suicide, by an overdose of antidepressants and blood-pressure medication.

“Because she needed more air in her body?”

“Yes, kind of.”

“Because she drowned in the deep ocean?”

“No, Maga didn’t drown.”

“Because she was eaten by sharks?”

“No, she wasn’t eaten by sharks.”

I think about an alternate reality in which my mother was eaten by sharks. Let’s just say it would not have been very likely to happen. My mother wasn’t the adventure-sports type; she did aerobics. She got seasick easily and didn’t like getting her hair wet in the pool, so it’s hard to picture a shark-infested venue that would have appealed to her. But, for a moment, I imagine my quiet, stay-at-home mother skimming the waves on a catamaran or yacht with wind-filled sails, scuba diving or snorkeling in the Great Barrier Reef, surfing off of Santa Cruz, or diving in a shark cage and attracting the attention of a rogue Great White.

It’s not a very pleasant scenario. The shark’s muscled gleam thrashing in the water, its gaping prehistoric maws, those many layers of razor-sharp teeth clamping down. That shit must hurt. The last five or ten or twenty minutes of a life that ends in getting eaten by a shark must really, truly be terrible. But the time leading up to it? That sounds pretty awesome, actually, full of the freedom of the waves and the smell of salt air and brilliant sunshine on tanned skin and the lithe loose feeling of a body moving in the water. If my mom had been living a salty oceanic life, surfing a sunny blue wave or sailing the high seas, surely she would not have suffered the kind of gray dark depression that led her to wish to die peacefully, in her bed, after a hopeless muddy season of misery.

My mother was never one to surf a wave, to glide easily over a crash and break of current and foam. She lived in the wave, wiped out hard; her moods crested and crashed and she was pounded into the sand and finally it got to be enough. She didn’t need a shark to eat her alive; her moods did that for her.

I couldn’t give Lucy that answer, not then. I couldn’t, at first, bring myself to tell her that her grandma had taken medicine that killed her. Someday, I thought, I would tell both my girls about that, but I couldn’t find the words that day.

Nora, who was four when my mother died, had also asked how it had happened when I told her of her beloved grandmother’s death. I was in shock then, the morning after the police found my mother’s body, and I simply said that Maga’s body was sick and stopped working.

Since then, I’ve known I would wait to tell my girls the whole truth. But the time had come, after Lucy’s questions started, I began to wonder if my feeling that a small child can’t handle this information wasn’t merely a product of my own preconceptions about suicide; kids don’t know there’s a stigma attached to it, after all.

I thought that death, the bare fact of it, was hard enough for a kid to understand; further explaining that someone might want to die, and discussing mental illness, felt like too much. But I believe in telling the truth to my kids, hard as it might be. Time, and therapy, had helped me to face up to the facts of my mother’s death and come to a fuller, less guilty understanding of it. I worried that as my kids grew—Nora was seven by then—they were apt to overhear, and possibly misconstrue, adult conversations. I didn’t want them to overhear whispers and conclude either that their grandmother had done something to be ashamed of rather than to grieve, or that we don’t talk about mental illness or acknowledge its reality.

Explaining, however, is easier said than done. As Lucy’s line of questioning shows, death makes sense to children only in the most extreme terms: If a person is eaten by sharks, ripped to shreds by a toothy prehistoric fish, even a three-year-old can understand that that person is not going to come back ready to play some more. Regular, ordinary death, the kind that happens every day, doesn’t make sense: how could a person lie down in their bed one night and then just not be the next morning? The body hasn’t disappeared, but something has ineffably changed. Plenty of grown-ups struggle with that notion too, so explaining it to a kid is extra difficult. Layer on the idea that a person would choose to make that happen, and the explanation borders on unbelievable.

Especially if it’s your grandma. My mother loved Nora so much that her adoration sometimes seemed excessive. Every time she saw her, she wanted to be baking cookies or trick-or-treating or doing something extra-special. As a result, we have lots and lots of pictures of my mother doing grandmotherly things with Nora. There are only two pictures of her with Lucy, though: by the time Lucy was born, my mother was deep in her final illness, manic and difficult, and we weren’t spending a lot of time together.

The warm, cuddly cultural space occupied by the notion of a cookie-baking grandmother is about as far from the idea of suicide as one could imagine. Grandmas are supposed to stick around being sweet throughout one’s childhood, right? Sometimes, on top of all the other feelings I have about my mom’s death, I feel angry that my kids have been cheated out of something special, the chance to have a close relationship with a local grandmother. I never expected to live in the same city as my mother; my husband happened to get a tenure-track job in the city my mother moved to after I left my hometown. It felt like a bit of strange serendipity, when we might have moved anywhere. In reality, though, our relationship was not easy or smooth, so my idyllic vision of three generations peacefully baking together is really a wistful one, but still, I wish my children could have had that.

Now, however, she isn’t here, and my children deserved to know why. My mother’s suicide is part of their medical history, much as it’s part of my own. Suicides often run in families. The thought of my girls, my happy, sunny, beautiful daughters, ending their lives terrifies me so much I can hardly bear to write the words. Fear of that possibility kept me from being more honest with them.

Lucy is now five. Several months ago, she asked again how her grandmother died, and I took a deep breath. “She took too much of her medicine,” I said. “And even though medicine can help you, too much medicine can make your body sick and can make you die.”

Lucy looked at me, unfazed, and came back with a five-year-old’s most frequent question: “Why?”

“She took too much medicine on purpose,” I answered. “She had a sickness in her mind that made her very sad and she couldn’t get better.”

Lucy just nodded; I asked if she had any more questions, and she said no. A few follow-ups have popped up, but for the most part she has taken the information in stride. (I’ve also given a similar, though slightly more in-depth, explanation to her older sister.) Occasionally, if a discussion of medicine or doctors comes up, she will matter-of-factly mention that Maga died from taking too much of her medicine. Overall, I have found that telling my girls the truth has been a relief.

I don’t think answering their questions—which will inevitably get thornier as they grow older and gain more understanding—will ever be easy. But by having a fully honest conversation, I hope I’m taking the terror out of the facts of my mother’s death. The fact of her suicide and its roots in her depression won’t be shameful secrets but just the truth. And both my daughters and I can, I hope, come to a fuller understanding that the sharks that ate my mother were all in her mind.

Kate Washington is a writer based in Sacramento, California. Her work has appeared in such publications as The Washington Post, Yoga Journal, Sunset, and the Bellingham Review, and she is a contributing writer at Sactown Magazine. She is a co-founder of Roan Press, a small nonprofit literary press.

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Book Review: The Price of Silence

Book Review: The Price of Silence

By Hilary Levey Friedman

The Price of Silence coverLike Dara-Lynn Weiss before her, writing a negative piece about her child secured Liza Long a book deal. Her emotionally raw blog post, “I Am Adam Lanza’s Mother” (originally published anonymously on her blog The Anarchist Soccer Mom as “Thinking the Unthinkable”), penned in response to the Newtown shootings, quickly went viral after appearing on The Blue Review and then The Huffington Post. The reaction was extreme in both directions, with some applauding Long’s courage and identifying with her family’s struggle and others calling her an imposter and suggesting she is the one who needs mental health monitoring.

Her just-published book, The Price of Silence: A Mom’s Perspective on Mental Illness, is an expansion of that polarizing post. According to the Introduction this is a book for two different audiences. The first is those families who have a child with a mental illness to let them know they aren’t alone by sharing her family’s experience. The second is for those who are “surprised to learn that one in five children in the United States has a serious and debilitating mental disorder, an audience that believes mental illness is something we still shouldn’t talk about except behind closed doors in private rooms.” The Price of Silence succeeds in addressing the latter audience more than the former.

Long is at her best when describing the labyrinth families must navigate when they have a child with a mental illness. A myriad of acronyms must be decoded, reports must be written, and parents have to accustom themselves to the idea of dealing first with administrators and educators in public schools and then with first responders like police officers before frequently turning to the juvenile justice system. Though “institutions” no longer exist (in many cases, happily so), no good system has developed to figure out how to take care of the mentally ill, especially children. Many have to enter juvenile detention and hope to stay on parole to get actual treatment at an affordable price. Long writes of parents divorcing so their child can access services with a reduced family income, and poverty in general is a big issue when it comes to children’s mental health. She explains, “In some states, this transition from school to prison is so regular that it’s been called a ‘pipeline,’ one that disproportionately affects poor children and their families.”

One of the most practical suggestions Long makes in The Price of Silence is that pediatricians need to be better trained to identify the warning signs of various forms of mental illness, and not just autism. Though it is true that there is much still unknown about the science of mental illness, more is being understood every day through new imaging techniques and DNA analysis. Because Long discusses a lot of of-the-moment research, the book might not hold up well over time. But her message that there is a complex interplay between genetics, parenting, and the environment, and her reminder that people with mental illness are usually the victims of violence (and when they are violent it is usually against themselves) ensure that The Price of Silence is an important book.

The book falls flat in describing what it is like in Long’s family, which clearly has a complicated dynamic with four children, an ex-husband, and a new partner, along with a change of family religion. She refers to an acrimonious divorce and custody battles, but doesn’t get into specifics and if anything is clear it is that the situation isn’t resolved. That murkiness dulls the larger messages of her book and it may have been more effective to limit the more personal to one chapter.

While Long’s blog post did net her a book deal, it also caused a lot of anguish as her ex-husband had their two youngest children removed from her home on the basis of the violence described. At the same time because her piece reached so many it ultimately led her to a child psychiatrist who seems to have at long last provided a diagnosis and treatment for her son. Now diagnosed with juvenile bipolar disorder with a “Fear of Harm” phenotype, “Michael” is doing better and spending more time with his younger siblings. In many ways Liza Long is not like Adam Lanza’s mom because she acknowledges her son’s illness and will never have guns in the house. And hopefully her message and suggestions can help other mothers avoid the sad fate of Nancy Lanza and those impacted by acts of violence by sick young men.

Hilary Levey Friedman, PhD is a sociologist and writer. You can learn more about her work at www.hilaryleveyfriedman.com.

Blind Curve

Blind Curve

BT 14 Blind Curve Art 2By Debbie Hagan

I pause at the bottom of the stairs leading up to the teenage residents hall in this psychiatric hospital where my thirteen-year-old son has spent the last few weeks. Though I’m in a hurry, with an only an hour to have dinner with Connor, I stare at the fortress-like balustrade. For the first time it occurs to me, from the bottom I can’t see to the top. The stairs go up, curve at the landing, then disappear.

Then I realize these stairs were boxed in to keep mental patients from hurling themselves off the top. A cold bead of perspiration runs down my spine as I edge up the stairs, turning blindly around each corner—almost as if I’m in a funhouse where the floors are slanted and the water runs uphill. When I reach the top, a curious eye peers through the wire-mesh. The latch releases, then the steel door groans open.

Inside the air is thick and moist like a locker room smelling like dirty dishes and teenage sweat. I turn left, past the common kitchen, hurry through the boys’ living room and down a dark, narrow hall.

Connor’s room is the last one on the left. Inside, he’s sitting on his bed, perched on a pile of rumpled sheets, his ash-blonde hair gelled straight up held by something he calls “glue.” He wears tan cargo pants and a white T-shirt hand-lettered with the words: Counter Clockwise, the punk band he formed last summer. Now he stares into space, his eyelids between open and closed.

The room looks more like a college dorm than a hospital: two twin beds, a wooden desk, and an armoire with the door hanging cock-eyed from one hinge. In the corner, a mouse has chewed a half-circle hole that looks like a sketch from a Tom & Jerry cartoon. I notice something on the floor. When I edge closer, I see chunks of the homemade brownies I’d baked a few days ago.

“I can’t stay long,” I tell Connor, setting the Taco Bell bag on his desk. “I’m teaching a class at eight.”

Connor moves sloth-like, an obvious side effect from the new drug. The psychiatrist says it will take the edge off of his explosive moods. My son picks through the paper bag, pushing aside the napkins and sauce as if he’s not really hungry.

I look down to Connor’s desktop. Someone etched into the wood, with a pen, a chubby marijuana joint with smoke curling from the tip. It reminds me of a 1960s Robert Crumb cartoon—a bit too sophisticated to be Connor’s.

“What’s four-twenty?” I ask, pointing to the numbers above the joint.

“It’s the international pot smoking time,” Connor says in a tone that says, Stupid, everyone knows that.

I laugh. “So everyone’s supposed to light-up at 4:20?”

He shrugs, “I guess.”

Maybe he has smoked a joint, but I doubt it. He’s just thirteen. He looks older, being six feet tall with a youthful fuzz of beard. On his arms, he writes punk lyrics, such as, “I have a heart full of napalm, babe.” With his spiked hair, black leather trench coat, eyeliner, and “Fuck off” attitude, he gives the impression that he’s a tough street kid.

I look into his face, and I’m reminded of what the middle school counselor once told me: “He’s so thin-skinned. He has no armor to protect himself.” Now it’s as if I see it—faint lines of blue crisscrossing beneath an ivory scrim.

I stare at the marijuana drawing, and I wish he were in a more nurturing environment. Connor is the youngest of the twenty or so boys on this hall; all seem to have a history of drugs and petty crimes.

While McLean Hospital has the reputation for being the world’s leading psychiatric research hospital, I’m not sure this is a good fit for him. His stories about this place scare me. First there were the boys who stole a spray bottle of cleanser from the janitor’s closet and huffed it. A counselor found them delirious, sprawled over a bed. Two other boys bragged about having sex in the bathroom. This week, a boy became violent and beat another patient.

The atmosphere here is a little prison-like and makes me wonder how Connor can get well. I’d bring him home, but I worry, would he just go back to running away, cutting, and trying to kill himself? I don’t think I can live through that again.

“Are you sleeping okay?” I ask.

He raises and lowers a shoulder, biting his burrito. He chews a little and looks as if he needs to pick through the cotton in his brain to find the answer.

“Last night the strangest thing happened,” he says. “There was this blue streak of light that came into the room. It was right about here.” He gets up and stands in the middle of the room.

“I was asleep,” he points to the spot where I’d first seen him. “And I saw it…there was something here.”

“Was it a ghost?” I ask.

“Hmmm. I don’t know, but it was something.”

He’s staring into space, curling into himself, pale and nervous.

“So what did you do?” I ask. “I prayed to God that it would go away and leave me alone.”

I watch my child, standing in the middle of his room talking about ghosts, and I feel more alone than ever. No one can help me, not even my husband who’s angry with Connor for acting out. I try to tell him, it’s not Connor’s fault. Even the doctors don’t seem to get it. They tell me he’s obstinate and defiant. I argue, this isn’t my son. It’s as if someone stole my son and replaced him with someone who looks like him. They stare at me as if maybe I’m the one with the problem.

I look at Connor, searching his room for ghosts, and I’m feeling alone and scared, and I don’t know what to say. I change the subject.

“So how was the Fall Fling?”

All week he had practiced his cello for the patient variety show. He had chosen William Squires’s “Tarantella”—a strangely hypnotic tune about a woman bitten by a tarantula who falls into a zombie-like trance, which seemed apropos for here.

Connor raises and lowers a shoulder. “Ehn.”

“Wasn’t it fun?” My voice sounds insistent, practically begging Connor to say, yes.  His lips quiver. He can no longer wrap them around his burrito, so he sets it aside. The back of his hand wipes away a tear. Dear God, please give my child one moment of joy.

Connor is crying. I close the door and sit next to him. I place my arms around him and squeeze his shoulders. I’m amazed when he doesn’t brush me away.

“It’s okay,” I murmur. “Just tell me what happened.”

He gives me bullet points. The patients on the third floor—boys and girls—gathered under the trees, on the terrace behind East House, for a picnic. All of the kids sat with their friends. They laughed. They talked. They ate. They played games, like the three-legged race, but no one wanted to talk to him. No one wanted to be his friend.

“Surely there was someone,” I say.

Connor shakes his head and tells me that one of the boys on his hall said something mean.

“What?”

He shakes his head. His face twists into a painful grimace. He cries, “I can’t even get along with people in a mental institution.” He bats away tears.

There’s a thickness in the room, making it difficult to hear or speak or feel anything—as if I’m bound motionless in my chair. I try my best to keep a poker face, because I don’t want Connor to suspect that I’m confused and frightened.

“Let’s face it, Connor, a mental institution isn’t a great place to make friends. Everyone here has issues and trouble interacting with people.”

Frankly, I don’t know a lot about mental illness. Over the past few weeks, ever since Connor was diagnosed with bipolar disorder, I’ve read a stack of books. I’ve learned one thing: mental illness strains all relationships. It makes those with the illness behave unpredictably, and those who love them afraid, frustrated, and sometimes angry.

As for kids, this has to be the cruelest part. Kids with mental illness stand out profoundly, and, thus, become bullying targets. That’s why Connor is a victim no matter where he goes—even here.

“I know what people think,” Connor tells me. “I can look at them and tell what they’re thinking.”

“Oh, Connor,” I say.

“No, it’s a gift and a curse!”

I stare at the broken dresser, the mouse hole, and my son who now believes he can read minds. I zip up my jacket but it doesn’t stop my shaking.

I’ve forgotten about time. When I look at my watch, I see it’s already past seven. I have to cancel my class. When I call the school, the administrator warns me, canceling a class at the last minute violates my teaching agreement. I apologize and say, “It’s a family emergency.” Still, I know how these things work. I’ll be taken off the roster next semester.

My whole life is derailed—my teaching, my graduate studies, even my relationships with my husband and other son.

I dig through my purse and find a pen and a small notebook.

You’re going to take notes?”  Connor asks.

“This will help me remember,” I say.

I notice Connor is now sitting forward, almost leaning into me, rather than slinking back into the folds his hoodie.

 “You should be a psychiatrist,” Connor says.

I’m a little surprised by the way he has perked up and wants to talk. I decide to seize this opportunity, but I remind myself: Play this cool. Be calm.

 Right away, Connor tells me, “One of my friends cut himself today.

“Hmmm,” I respond and write it down.

“What do you think will happen?” Connor asks.

“Well, he won’t be going home.”

Silence.

It lingers too long, and when I look up, I see Connor’s lips are chalky, his gaze far away. My heart sinks.

“I cut myself.”

“When?”

“Just before you got here.”

“Why didn’t you call me?”

“I didn’t know your number.”

He had it, but he likely acted first, then thought.

For about thirty seconds, we stare into the void, searching for how to move on.

I go back to playing psychiatrist, writing random words in my notebook.

Connor tells me that after the boy said something mean to him, he grabbed a plastic knife and ran to the bathroom.

“I stood staring in the mirror, and I couldn’t even control it,” he says. “It was my choice.  I could stop, but I didn’t want to. Sometimes the dark side takes over, and I’m not at all me. I lie to people to make them think I’m in a good mood, but I’m not.”

I write, and I wonder if this is new or has he always been this way? Could I have misunderstood my son…all these years?

“Where did you cut yourself?” I ask.

Connor points to his thigh.

“Can I see it?”

“No!”

I’m acting like a mom again. That won’t work—not tonight. As long as I’m playing psychiatrist—open and emotionless—he will talk.

Still the mom in me worries about the cut. I look at his pants. I don’t see blood. I decide he’s not going to bleed to death.

I push on, because there’s one subject I really want him to talk about. It’s the seventh grade school trip. That’s when Connor’s behavior changed. He had told me that he was bullied. I’d mentioned this to his psychiatrist, but Connor refused to talk about it.

I scribble as I gather my bearings. Then I take a deep breath, “Can you tell me what happened on that trip to Washington D.C.?”

Connor squeezes his eyes shut and grimaces. I expect him to explode, order me out of the room, and then bury himself under his covers.

Instead, he’s silent for a long drawn-out minute. Then, to my shock, he begins telling the story. He picks up from what I already knew, how his roommates made him sleep on the floor, so they could have the beds. Then they refused to share their sheets and blankets. They made fun of his deodorant, calling it “women’s deodorant.” In fact, it was a unisex deodorant, which I had bought, thinking it was more fitting for a thirteen-year-old—better than Old Spice or Axe. I couldn’t imagine it could be turned into a joke.

Now he begins talking about the second day of the trip, when all of the seventh grade buses pulled up to the U.S. Mint, and the kids gathered in groups. Suddenly Connor’s roommate, a boy named Mark, shouted to the entire group: “Connor wears women’s deodorant.”

As Connor tells me this, his voice rises in pitch, exaggerated and sing-songy. I stare at him as he clenches his fists and bares his teeth. I’m frightened, because, in this second, I don’t even recognize him.

As if he’s reliving the moment, he shouts out, “Shut the fuck up, man! I don’t use that stuff.”

The fury in his voice makes the hairs on my arms stand up.

Connor composes himself a little, telling me that everyone laughed at him. They looked at him and pointed. Then Mark repeated the phrase he’d read on the side of Connor’s deodorant: “strong and beautiful.” The boy said it mockingly, girly, and the crowd laughed even harder.

Connor told Mark to stop, but he wouldn’t. He kept shouting and laughing, spurring the crowd on. So Connor grabbed him by the throat and lifted him off the ground. Joe tried to pry his hands off, but Connor said he wasn’t about to stop.

“I wanted to kill him.”

“So what happened?”

“One of the teachers pulled me off and told me to take some space.”

“That was it?”

“No one ever does anything,” Connor says. “The teachers saw what had happened, but they don’t care.”

I am stunned. How could this have happened in front of teachers—chaperones who are supposed to keep kids safe on these trips? And no one said a word to me or even tried to find out from Connor why he acted this way?

“Did you really want to kill Mark?”

“He’s a sadist. He deserves a spot in eternal damnation!”

I fall back in my chair. To think my son could have killed this boy—over deodorant. Connor’s a big, strong kid and given his level of anger, he might have done it. This scares and confuses me. How could this be the same boy who gives brownies to mice, who sleeps with a rainbow-striped dolphin?

Connor continues, “I heard it everywhere I went. I heard it in my hotel room, at dinner, on the bus all the way home. Twelve hours I listened to it in my ear: strong and beautiful; strong and beautiful; strong and beautiful. I thought I was going to explode.”

By Monday, all the kids in school knew about the deodorant. They ran up to him in the hallways and yelled, “Strong and beautiful.” They shouted it during homeroom, and at lunch. Two of the popular girls handed him a present tied it up with a bow. Excited, he tore off the wrappings only to find a stick of girl’s deodorant and a Cosmopolitan magazine. They roared in laughter. He ran to the bathroom and cut himself with a paperclip.

“I don’t like to talk to people anymore,” Connor tells me. “I can’t make friends without thinking how they hate me. I can’t trust anyone.”

For the first time ever, I understand how this chain of events unfolded and how my son ended up here.

Connor grabs me and hugs me hard. When I start to let go, he grabs me again, tighter, his breath moistening my hair.

“I want to go home,” he whispers, “but I’m not ready.”

I realize, he’s afraid too. He’s afraid of being hurt again.

I bury my head in his T-shirt, soaking up his warm, musky scent.

“It’s okay. You’ll come home when you’re ready. It will be soon.”

On my way out, I’m not so sure. I look back down the stairs, dark and boxed in. A few hours ago I couldn’t see my way to the top. Now I can’t see my way to the bottom.

Author’s Note:  The notes taken that night enabled me to recall our conversations just as they occurred, in addition to the other small details. Connor spent about a month in the hospital, followed by four years of working with therapists and psychiatrists who helped him deal with the pain caused by school bullying. Today Connor is 22 years old, pursuing a bachelor’s degree in computer science, and enjoying his life—without medication.

Planting Seeds

Planting Seeds

By Kate Abbott

iStock_000010984123SmallI had the Zoloft. I needed to take it. But I was still standing in my kitchen the day after seeing my nurse practitioner, holding a pill so small I could barely feel it on my palm. How could this pill be strong enough to pull me out of this hole I couldn’t get out of on my own? This tiny pill, I thought, was stronger than I was.

I wanted to take it. But I also hated to take it and admit this was a problem that I could not fix on my own. Taking the pills could save me. I wanted them to save me. But at the same time, it would mean admitting, finally, completely, that I needed them to be myself. To be who I used to be. If I could even be that person anymore.

Almost every part of me knew I needed to try this. Following my nurse Lynn’s carefully written instructions, I positioned one small pill on a paper towel, then found my tiniest, sharpest knife and quartered the pill, sending some dust specks falling onto the paper towel. I held one quarter in my palm, barely able to feel it. It was about the size of a single Nerd candy. I was desperate for this tiny piece of pill to help me, but I was certain it couldn’t do much of anything at this size. I put it in on my tongue, sipped juice, and couldn’t tell if I’d swallowed it. I stood in my kitchen, listening to my son Henry drink his own juice in the high chair, watching me and kicking his feet. I didn’t want to move just yet. Stupidly, I waited for something to happen. I knew it would take a couple of weeks to feel any effects. I knew this dosage probably wouldn’t do anything. But the part of me that wanted to resist the pills was also hopeful they might work. Happy pills, right? Did they make me instantly happy? I feared that and wanted it desperately, too.

Henry knocked over his juice and started crying. I got a dishtowel and went over to sop it up. He flipped his spoon out of his mashed sweet potatoes, sending them flying onto the floor, the walls, and me. I laughed at myself, at the whole situation, and wanted to cry. They weren’t working yet; they weren’t going to cure me today.

I took my carefully quartered pills for 8 days with no bad effects. Every morning I thought, Maybe today will be the day it will all change. The day I will change. But I didn’t feel all better. Then I noticed I was able to take a shower a couple of days in a row and even get dressed. Was it working? Was that my newfound hope at work, or was there something chemical going on already? While I wanted to be skeptical and not get suckered into some placebo effect, I was feeling better; and when I could be outside with Henry and not feel utterly exhausted and angry and sad, when I could see it was another couple of hours until Brad would be home and I wouldn’t collapse in total despair, I did not care if this was a placebo effect or not. I just cared that I was starting to feel better.

I progressed through the weeks to taking one whole pill a day. And then one morning, I woke up and thought it looked like a nice day outside and maybe Henry and I would go in our little backyard and look around at our plants. We hadn’t been out there in so long. I wandered over to the window at the back door, and it was like I was looking at someone else’s yard. The patio we’d built had weeds taller than Henry growing up through every space between the paver stones. The plants I’d collected over the years looked dry and dead, even though it was spring.

How had this happened so fast? I thought. And then it hit me—it hadn’t happened fast at all. The weeds had been slowly growing since the summer. The plants had been slowly dying since the summer. For eight months. I hadn’t even looked at them really.

I scooped up Henry, both of us in our pajamas. Henry giggled on my lap and I actually giggled back at him, grinning at his smile, at his gums and his two perfect little white teeth. I looked at him in astonishment. I felt like I hadn’t seen him in a long time.

“Where have you been?” I said. He blinked at me.

“Mom-om-om,” he said. “Mom” had been his first word, a couple of months ago. I had felt unworthy then.

“Yes, I’m your mom-mom-mom.” I bounced him. I saw him. He was a baby, but almost not. He had a full head of blonde hair now and it was getting long. He was chewing with his sharp little teeth and his hard gums. He was looking at me and I was seeing it.

That is when I knew I was getting better. I could see him and the plants and the weeds and the sunny day outside. I saw my toenails with some purple polish I’d been motivated to put on last week. I saw my pajamas, not matching, but also not what I would be wearing all day anymore, either. I realized that each day that week, I’d been having longer “good” times. Today, maybe the good times would even be longer than the bad times.

We went out to water plants. I cared about my poor neglected plants and my poor unseen baby and my sad attempts at motherhood. I wanted to dig up dead things and pull old weeds and plant new seeds and I wanted to start everything over again. And even if it was just pulling weeds, I hadn’t wanted to do much of anything in a long time. Starting with the weeds was just fine with me. We both couldn’t wait to get our hands dirty.

Kate Abbott recently completed the postpartum depression memoir Walking After Midnight, where a version of this essay appears. Her YA novel Disneylanders was published in 2013. She lives in Northern California with her husband, son, and tiny parrots.

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Ex In-Laws at My Wedding

Ex In-Laws at My Wedding

By Sue Sanders

BC_FA2013_Final_layoutI stood in my ivory silk wedding dress clutching a bouquet with my six-year-old daughter by my side. Lizzie held tightly to a basket of rose petals with one hand and to me with the other. She pulled on my arm and looked up.

“Now we’ll be an official family? And Jeff will be my official dad?” she whispered. Smiling, I nodded, squeezed her hand, and scanned the small crowd gathered on our front lawn for the occasion. Nearly everyone important to us was there: our friends and family, my new in-laws and my ex in-laws.

 *   *   *

When Jeff and I had first met, it was electric. It was also complicated: we’d both been married before and carried bits of our past into our present. I brought my young daughter; he, Louis the dog; and both of us, a subset of ex in-laws. When Jeff divorced, he had only occasional contact with his ex-family: exchanging holiday cards and email and later, becoming Facebook friends. But I remained close to my ex in-laws, chatting on the phone frequently and staying occasional weekends with them at their house in suburban New Jersey. Lizzie, their only grandchild then, helped cement our relationship as did my ex-husband’s severe bipolar disorder, which made it vividly clear that divorce was our only realistic option.

My ex-husband and I met in college and were together eighteen years. His parents, Tom and Nancy, had seen how I’d spent the final five years of my marriage, desperately trying to get my husband to take the pills that could control his illness. We were bound by the horrific experience of seeing someone we all loved deeply refuse psychiatric help and get sicker as a result. His parents knew that their son’s illness was no one’s failing; that ours was the ultimate no-fault divorce. They’d welcomed me into their lives all those years ago and their son’s illness wouldn’t change that, would it? Part of me wondered, but I tamped down the doubt, sure we’d continue to have a relationship.

From the time my husband and I had separated, my ex in-laws continued to be both emotionally and financially generous with Lizzie and me (I had quit working to stay at home with our baby). When my ex’s “episodes” became more frequent and severe, finally leading to the end of our marriage, Tom and Nancy took Lizzie and me into their home while we worked with a series of doctors and New York City’s Department of Health and Mental Hygiene to have their son hospitalized. They were there for us when their son, in an angry manic phase, canceled our health insurance and had all our mail forwarded to his house. They were there when their son frightened my upstairs neighbor into giving him a key and then let himself into my Brooklyn apartment. Much later, when I finally met with a divorce lawyer and we all realized that my ex-husband was in no condition for court, his father Tom became his son’s legal guardian and represented him in the proceedings.

More than a year went by. I eventually started dating and met the man who’d become my second husband. Jeff and I met online, flirting and getting to know one another remotely. When we finally met in person, we knew it was real. As time passed and our relationship deepened, it all seemed so easy and natural something I hadn’t experienced for ages.

After dating for a year, we moved in together, to a little house in a small town in the Hudson Valley. One afternoon, a few months later, Tom and Nancy drove the two hours from their house to ours the house that they’d loaned us money to help buy—where Tom would meet Jeff for the first time and Nancy, who had joined us all for Lizzie’s fifth birthday party a few months earlier, would get to know him better. I was nervous—I felt a bit like a matchmaker arranging a blind date. Would Tom and Nancy like Jeff? Would it be awkward for them to see me with someone who wasn’t their son and to see Lizzie treat Jeff as the father he had already become to her? Would they flinch if Lizzie referred to Jeff as “my dad”? How did they fit into our lives, anyhow? I wanted them to continue to be involved, but what are the rules for ex-family? I wasn’t sure, but we were grafting new branches to our family tree.

As I wondered what would happen, I realized I was really seeking their approval—even though the logical part of me understood this was ridiculous. I was an adult. I wasn’t their child. They knew staying married to their son wasn’t an option. Still, there was a tiny portion of me that felt guilty for abandoning my mentally ill husband.

When they finally pulled into our gravel driveway, we all dashed out to greet them. Nancy struggled on an arthritic knee to extract herself from the passenger seat, then greeted Jeff with a peck on the cheek. Lizzie and I escorted her into the house, walking slowly in time with her cane, while Jeff helped Tom pull multiple bags of brightly wrapped gifts out of the trunk. I could hear them laughing and talking. Jeff let Tom know how grateful he was for their generosity and compassion toward me. Tom told Jeff he really appreciated hearing that. When Jeff repeated all this to me later that night after Tom and Nancy had left, I felt incredibly thankful—and relieved. I hadn’t realized that I’d been holding my breath and I could finally exhale.

Their visit crystalized something that had been bothering me since my ex-husband and I separated: there needs to be better vocabulary to describe changing family relationships. Lizzie seems to be aware of this deficiency, and flips back and forth in an almost bilingual manner depending on her audience, referring to Jeff by his name when she ad- dresses him, and calling him “my dad” when she talks about him to friends and family. I find the lack of accurate words challenging, as well. What label is there for ex in-laws who are still in a person’s life? I’ve tried to refer to them in other ways, though nothing seems right. Using just first names when I introduce them to friends somehow doesn’t convey our bond. And introducing them as “my ex-mother-in-law, Nancy, and ex-father-in-law, Tom” maybe accurate, but it’s an awkward mouthful. I play around with possibilities, but none seem right: my mother-out-law; my father-ex-law; my parents. I can’t think of any short, pithy label to explain how our relationship, though changed, is still a close one.

*   *   *

A few months after that visit, when Jeff and I decided to marry, we didn’t hesitate to add my ex in-laws to our small wedding’s guest list. It felt right.

So there we all were: friends, family, ex-family. That June afternoon was a clichéd ideal of Hudson Valley wedding weather—sun peeking through wispy white clouds that kept the day from getting too hot. Though our row of peonies had already died back, dropping their petals all over the ground as Lizzie soon would hers as flower girl, the potted foxglove and geraniums on the deck overlooking the distant mountains were in full bloom. A scrum of kids played freeze tag and softball in the yard before settling into chairs with their parents. Then I said that I did and Jeff said that he did too, and we kissed. I grinned at my family and ex-family, so glad they were there for the very beginning of this newest phase of our life.

Jeff’s friends seemed surprised that we’d invited my ex in-laws to the wedding, after they’d been introduced during the reception with that awkward mouthful of words. Later, I poured a glass of merlot and brought it to Tom as he sat on a folding lawn chair in the backyard. He stood and hugged me, a genuine hug from someplace deep inside. I thought about how conflicted he must have felt to see his ex-daughter in-law so happy with a man who wasn’t his son, and to see his granddaughter bond so firmly with a “new” dad in a way that she never would with his son. I hugged Tom back.

“I’m so glad you came,” I said, as we sat back down.

Tom reached for his merlot and took a sip. He seemed at a loss for words.

“You’re part of our family,” I said, tearing a little for all that we’d been through together with his son—and for all that was ahead of us.

“And you’re part of ours,” Tom said softly, eyes moist.

I feel so lucky to have had even that brief conversation. Three weeks after our wedding, Tom died in his sleep.

*   *   *

Now, years later, we’re still writing our own rules about what family is. We visit Nancy in her Manhattan apartment every summer. She’s stayed with us as well. But we still grapple with explaining our relationship to others and what, exactly, to call one another. Lizzie has it easy: “grandma” is grandma no matter what. But I still don’t have a convenient word and perhaps I never will.

Our new nuclear family is celebrating its ninth anniversary this summer and we’ve each celebrated nine birthdays together. Lizzie’s homemade birthday cards to Jeff have progressed from squiggles and backward letters, with stick figures with curly gray hair crayoned on the front, to tiny, careful cursive with anime-like drawings. Some have said “To Dad;” others, “To Jeff.” But however she chooses to address them, he’s very much her “official” parent.

Author’s Note: I’m still wrestling with what “family” means and searching for a word that can describe ours to others less awkwardly—there aren’t any nice, concise expressions that easily explain ex-family still in someone’s life. I also sometimes wonder if these bonds will remain as strong over time as with “regular” family. I hope they do.

Sue Sanders’ essays have appeared or are forthcoming in Brain, Child, the New York Times, Real Simple, the Rumpus, the Oregonian, the Seattle Times, The Morning News, Salon and others. She is the author of the book Mom, I’m Not A Kid Anymore.

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Finding Mars

Finding Mars

BC_FA2013_Final_layoutBy Virginia Holman

Bad news usually came through the phone, so Marie was unprepared to receive it in the Walgreen’s, face to face with her daughter’s landlord. She was waiting in line at the pharmacy counter, where she was picking up three months’ worth of medication for herself and Jimmy, her husband. There were at least five pharmacies that were closer to home, but Marie chose this one because she didn’t want folks in town knowing her family’s business.

There was Jimmy’s Glucophage and Coumadin and some cholesterol drug (he’d had a minor stroke seven years ago); she was also picking up Atenolol for her bumpy heart, as she called it. Sometimes, the rhythm would shift from its usual light beat to a chaotic tempo that felt like a bag of groceries had split open in her chest and things were tumbling out of the bottom too fast to catch.

Today, she would also receive her first bottle of Buproprion, which Dr. Khira had prescribed at her annual physical last week after she’d ticked the box for depression. She’d hoped he’d ask her about her sadness, but instead he’d handed her two weeks’ worth of free pills and a pharmaceutical brochure—an effective dodge, she supposed—that enabled physicians to avoid speaking at length to their patients.

In essence, he’d handed her a picture book. First there was a fair-haired woman in a gray kitchen, holding her head. Then there was a brilliant yellow pill. Finally, there was the same woman wearing pastels, lipstick, and tossing a ball with two children. Marie had looked at Dr. Khira, ready to speak, but instead smiled a smile that was more a reflex, a simple revelation of teeth, than an expression of her true emotional state. For the smallest of moments, he’d appeared bewildered. Good, Marie had thought. Welcome to the club. Then, because she knew how much doctors valued compliance, she’d put the prescription in her purse.

Now, as Marie waited in the interminable line at the pharmacy, she recalled reading that so many people took these drugs traces were present in the drinking water. Why, if the whole world was happier on medication, shouldn’t she surrender? She’d taken five days’ worth of the sample pills and noticed, if nothing else, that she felt a bit more awake.

“Mrs. Moore, I was just thinking about you!” Wade Thayer, her daughter’s landlord in Cedar Grove Apartments, stood beside her wearing a lime green polo shirt with a flashy swordfish embroidered over the chest pocket. He was a big man, tall and thickly built, and Marie was amused to see him pushing a dainty blue plastic cart full of discounted batteries, light bulbs, and cheap plastic children’s toy sets. One was a princess set with a tiara, a synthetic blonde ponytail, and a hand mirror. “I stock up after the holidays,” he shrugged.

“Grandchildren?” asked Marie.

“No, no. I like to give out little things now and again to the kids at Cedar Grove when I collect the rent, make repairs.”

Wade’s voice was soothing, deep and mellow as whiskey. She wondered idly what his hands might feel like in her hair, on her waist. Marie felt her shoulders relax. Then, all at once, she realized that Wade was rather handsome, that she was at least twenty years older, and that she hadn’t been distracted by another man in so many years she couldn’t begin to count them.

Wade tilted his head at her, as if he knew what she was thinking.

“Hey,” he asked, “how’s Edna doing these days?”

“Enda,” Marie gently corrected him. “We gave her my mother’s name. Irish.”

“Enda, yes. That’s nice. Old-fashioned.”

“We spoke by phone last week. You’ve got your rent?”

“Yes, yes.”

“She sounded fine. She’s doing better.”

“Well, good.” He sounded genuinely pleased. “So, she’s working?”

“Enda, yes. She’s got a little job helping out at the Gulfstream at lunch and dinner. Not waitressing, of course. Some- times she buses, but mostly she handles the dishwashing. She says she enjoys it.”

Wade laughed. “I can see that. Don’t tell my Julie, but I like doing the dishes, too.” Marie offered a smile. She’d never met Julie, Wade’s wife.

“Well, see, the reason I ask about Enda is that I’ve been bit worried for her health—since she’s taken to wearing that wig.” Marie blinked. “Wig?” She felt her throat constrict.

Well, you know, when you see a wig or a scarf on a younger woman, you automatically think—well,” he lowered his voice, “you know.”

Marie forced out a breathy little laugh. “I can assure you, Wade, that Enda doesn’t have cancer. She’s just—Enda. One month she’s a redhead; the next she’s a blonde. Why not a wig?” She waved her hand through the air and her metal watch unclasped and flew from her wrist. Wade fetched it for her.

“May I help the next person in line?”

“Good to see you, Wade.”

The cashier retrieved Marie’s prescriptions and rang her out. Several fliers were stapled to the outside of her bag: one page had her name in bold black letters at the top and the word Buproprion, also bold. She folded the bag so no one could read it.

Wade Thayer was still lurking around the pharmacy section, leaning on his shopping cart with his tanned, sandy- haired forearms, waiting for her to finish. She’d hoped their conversation was over; now she saw there was more. He motioned her over to the shampoo aisle.

“Mrs. Moore, Marie, there’s something else. I don’t know how to say this; I’m just going to say it. Enda’s been in the dumpsters. I’ve been out twice this week after folks called. See, it distresses the other residents. And, of course, they worry for her, too. Does she have everything she needs?”

“What do you mean, in the dumpsters?”

“I’m sorry to tell you this. But she’s been outside, wearing that wig and rooting through the trash.” Marie felt her heart lurch. “I was out there today and told her she had to stop. She stormed off to her apartment. She took a few bits with her: a child’s shoe and a bag from Bullock’s Barbecue. I know she’s got food; why does she want that? I tried to talk to her, but she won’t answer my calls and refuses to open the door. I was going to phone you this evening, but,” he spread his hands wide, “then here you were. Here you are. How about that?”

“I think you’re confusing her with someone else, Wade,” she said. “I don’t doubt the wig, but dumpster diving? That doesn’t sound like Enda at all.”

“Mrs. Moore—”

“Of course, I’ll check in with her, just the same. It’s been a couple weeks.”

“Oh, I’m sure that would help.” He squeezed her shoulder, his college ring sharp on her collarbone.

Marie fled the store but sat for a long while in her parked car. The winters were mild along the North Carolina coast, so unlike her childhood home in Ohio. It was shirtsleeve weather today, in January. Marie ran her hands along the nap of the upholstery until she felt the hairs on her neck settle down, until her eyes ceased to sting. She wished she could open her mouth and bellow her fury at Wade Thayer. He was concerned for his investment, she thought, for his interests—not for Enda. She watched as Wade exited the store with a bit of bounce in his step, his burden offloaded.

*   *   *

Eighteen months ago, after nearly two decades of what Marie had thought was a sad yet peaceable estrangement common to families, Enda had appeared at their house like a stray animal: dirty, trembling, her long hair tangled and matted so badly that it had to be cut. She’d been living in Memphis, and had been beaten by one of the men she’d dated, though Marie doubted people called it that anymore. The livid bruises that ran from the outside of her wrists to her elbows bloomed huge and alarming, but the ones that made Marie weep were the small faded blue and green fingerprints on Enda’s upper arms, along her neck. The bartender where she worked washing dishes had been her salvation: Enda said he’d taken her to the bus station, bought her ticket, packed her food, and gave her his methadone for the long trip home.

The fee for Enda’s residential rehab was four times the cost of their first home. At first, Jimmy had refused to pay, arguing that “the girl had to be responsible for her own mess.” Marie had to remind him that though Enda was a thirty-seven-year-old woman, she’d never held a job with benefits or insurance. Jimmy relented, though he cashed in Enda’s unused college fund to cover the bulk of treatment.

“Don’t expect me to keep funding her forever, Marie,” he’d warned.

“No one,” Marie told him, “has asked you to do anything forever.”

Their conflict regarding Enda calcified. Marie felt, as the rehab center did, that Enda had an illness, a mental illness, in addition to her former substance abuse. Jimmy believed Enda had some “issues” that included malingering and taking advantage of his ability to pay for her needs.

Since Enda’s return from rehab, she and Jimmy had coiled away from each other, and meaningful conversation ceased. The night Enda arrived back home, Marie dreamt the small skeleton of a bird had lodged beneath her heart. Once awake, the pain knotted in her chest. Marie had no idea what her dream meant, but it reminded her of how, as a young woman, she’d once aspirated a fishbone at a family reunion. It had stuck in her throat so she could not speak. She couldn’t recall the extrication, but remembered as she’d choked, no one noticed. She’d felt wild with panic, but at the same time, she’d felt embarrassed, afraid she’d ruin the party.

*   *   *

Marie decided to stop by Cedar Grove on her way home from the pharmacy. There were eight apartments in each unit: four on top and four below. Last summer, Wade had installed white plastic rails along the landings that would never need painting. The roof, a patchwork of new and faded shingles from the tropical storms and nor’easters that passed through each year, needed tending. The stairs and landing were covered in Astroturf.

Marie pushed the plastic button on Enda’s door. A bell chimed inside. She knocked on the door with the heel of her hand.

“Enda! It’s Mother. Are you here?” Marie didn’t know Enda’s schedule, except that she usually didn’t work until later in the day. Her antipsychotic, if she was taking it, kept her groggy for a couple hours each morning. Marie fished Enda’s spare key from her purse but hesitated a few long seconds. She worried that she’d walk in on something she’d rather not see: Enda in bed with a man, drugs, or Enda muttering to herself, the way she did when she was off her meds. Then she thought of Enda in the dumpster and unlocked the apartment.

The fierce smell of ammonia met her. Marie had opposed the cat for exactly this reason. Enda barely cleaned up after herself. Cleaning up after the cat was unlikely.

“En-da!” she sang, so as not to alarm the girl. “Nomad!” The cat came out from under the sofa and stretched its hind legs before coming to where Marie stood.

“Hey, there, nasty thing,” Marie stroked the cat’s silky head. The door to Enda’s bedroom was open. Her sheets were huddled in a pile in the center of the bed. It appeared she slept directly on the mattress.

The apartment, which Marie and Jimmy also funded, was essentially two rooms: a modest bedroom and a living/dining area. A tiny pink-tiled bathroom was located between the two.

“Enda?”

Marie pushed open the bathroom door. When she flipped on the light, a palmetto bug slipped behind the mirror. The ceiling around the shower was lightly speckled with mildew. There was no sign of a wig.

She scooped the litter box, put the waste in a plastic grocery bag, and left. Enda was not at the dumpsters. When Marie tossed in the bag she forced herself to open each bin and look inside, just to be sure.

*   *   *

She arrived home at dusk. Jimmy stood on the back patio, talking on his cell phone. The brick walls were so thick, reception in the house wasn’t possible. She tapped on the glass door but he couldn’t hear her. They were both considering hearing aids. Once he was at the right angle to see her, she waved the bags at him so he would know she had returned.

Jimmy finished his conversation and she watched as he carried an empty oyster cage to the shed. This season, he planned to restore ten thousand oysters to the cove. He’d built a special shed for this purpose, and there were three chalky mountains of recycled oyster shells on the west side of their property, along with a used Bobcat.

Marie removed her watch and rings, set them in the kitchen windowsill, and washed her hands. She took two tuna steaks caught during Jimmy’s deep sea weekend last fall along with two ears of corn from the freezer. Jimmy was proud of their thrift; she knew he’d note at dinner that the whole meal had cost them next to nothing. Marie wouldn’t point out the $70,000 boat and the thousands of dollars in equipment and fishing gear, all of which Jimmy meticulously maintained. Though they could more than afford it, these were their only luxuries. They carried no credit cards, and no debt. Jimmy managed the money, except for the eleven hundred dollars he deposited each month in Marie’s household checking account. Their land, inherited from his people and passed down through generations, had swelled in value from fifty thousand to nearly two million dollars in the last two decades. Their regular investments had increased as well and rivaled their real estate wealth. Even so, they still carefully considered each expenditure, clipped coupons, bought store brands, never travelled. Both had grown up without, as they qualified it. They knew the same fickle wind that raised them up could also demolish them in an instant.

Marie poured herself a half glass of whatever white wine had been on sale that week and emptied Jimmy’s beer into a frosted mug, just as she’d done nearly each night they dined together during their marriage. These day-to-day routines had once seemed to her like mindless habits. Of late, they’d become the only small comforts she had—those she could rely upon herself to create.

Jimmy was sullen during their meal. She expected him to be irritated that she had run late, and had prepared a story about stopping by his mother’s grave to replace the plastic flowers. She hadn’t expected him to pout. Then, to Marie’s surprise, he apologized.

“Time got away from me,” he said. “I’m so sorry.” He looked genuinely aggrieved. “I didn’t mean to make you wait on supper.”

She was flustered, but touched by the naked emotion on his face. “It’s fine. I was late too,” she said, hoping he’d ask her why. Then, to fill the silence, she asked how long once he installed the reefs it would take their cover to recover. Jimmy had dredged for decades, so he could moor his boat at home instead of at the marina. Later, the marsh began to die, and their water with it. Forty years ago, they would swim on summer nights, and the water they disturbed would shimmer, silver and alive. Marie remembered it like a romantic film she’d once seen, with someone she could barely recall.

*   *   *

The next morning, Marie sat on their dock, smoked her morning cigarette, took her pill, and thought about Enda and the wig. Marie decided Enda was concealing something. Perhaps, Marie thought, Enda had bumped her head. No, more likely she’d badly permed her hair, or dyed it blue—that would be like Enda. Marie figured that if she offered her daughter a trip to the salon, she’d be able to see what was beneath the wig.

Jimmy was beside the boat shed, putting on his waders.

“I think I’m going to drive into town today,” she called out to him. “Help Enda with some shopping. I don’t think she works on Thursdays.”

He sighed. Then, lumbering in his stiff waders like a man slogging through mud, Jimmy made his way to where Marie sat. “She won’t be at work; she doesn’t work any day, now.”

“What are you saying?”

“She’s been fired, Marie. She hasn’t been to work in six days. Six days! She hasn’t even been in to get her paycheck. George from the Gulfstream called the other day asking if he should mail it here. She told him she was moving—to Mars!” He waved his hands in the air.

“Mars Hill Apartments, maybe?” Marie said.

“Enda made it clear to George that flying to Mars was the only way to get away from the terrorists at her apartment complex.” Something inside Marie slipped. She felt her body as something beside her, heavy and substantial, yet foreign. “I’m sure there’s a reason,” Marie said, though she knew better than to hope. “Let’s go by there and talk with her.”

“You talk with her.” The lenses of his glasses flashed bright and opaque and his mouth trembled. The combined effect made it appear that he was weeping, but his voice was quiet, as it was when he was enraged but trying to maintain control. “When you do, you tell her she pays her way now. There will be no more money.”

“Oh, Jimmy.”

“You can’t save her, Marie. Give her money and this will just keep happening.”

“What will she—”

“She’ll be forced to figure it out, just like the rest of the world.”

“She can’t. It’s not a choice for her.”

“Of course it’s a choice; give the child some credit. You want to give her money? Then get yourself a job and give her all your money—she’ll get no more from me. Jesus, I knew you’d get sucked in again. That’s why I didn’t tell you last week.” She felt herself return to her body, only now it felt like a trap.

“You knew she was in trouble last week?” Her voice emerged thin and squeezed.

Jimmy reddened in his fury. “Marie—”

“Come with me today, please,” she whispered, “Come look at your daughter.”

Jimmy took a breath and shook his head. “The best thing that could happen—for her, for you, for me—would be that she just—goes away.

“?Marie’s chest burned, as if her breath had been knocked from her. “Please.”

“I can’t,” he said, and gripped his forehead. “It’s so much worse when she’s in our lives.” Marie stifled a flash of rage and turned away. “We will never stop being heartbroken,” he continued. “Don’t you see? That’s our forever. I just want some peace. We’ve only ever known that when she’s gone. I’m so tired, Marie.”

Marie gripped her knees to her chest. The oily smell of the marsh was on the breeze. She stared out at the cove. A gull on the dock flipped its head back, unhinged its red maw, and gave a tinny laugh. “What kind of person says that, Jimmy?”

“I want our lives back. If that means she goes away, and we never see her again, well, I can find a way live with that.” Marie knew this was true. But since Enda’s return, Marie had not wished to return to the peaceful life Jimmy thought he had lost. What she longed for was her daughter’s return to health.

Marie stood to face him. “I’m leaving now to see Enda. She’ll need her rent and allowance money.”

“I won’t be taken advantage of any longer,” said Jimmy. “Maybe you can afford to fly to Mars with her, but I can’t.”

Marie started back to the house, but he tried to catch her hand. “Don’t you dare touch me,” she growled.

Jimmy shook his head, and then walked into the fifty-degree water, nearly to his chest, to retrieve his oyster trays.

*   *   *

When she first truly understood that Enda would always need their help, Marie had taken a small guilty solace in the situation. She felt her public identity in old age was now clear: to tend her damaged daughter. But she hadn’t been prepared for how the antipsychotics left her beautiful, red-haired daughter fat and lethargic. It was no wonder Enda hated taking them. Now this business with the wig, and picking through the trash! Marie just wanted it all to stop, for Enda to come to her senses, return to work at the Gulfstream, and need a reasonable bit of help to get by—the occasional run to the grocer’s or doctor’s. Yet each crisis further eroded Enda’s ability to function. She never fully bounced back. Marie knew Enda’s only hope was to stabilize, as one of the rehab counselors said. When Enda was in rehab, Marie thought stability would arrive when Enda stopped taking street drugs. Marie now understood the counselor meant that Enda’s mental illness had to stabilize as well, and that had proven tricky to diagnose and treat.

Enda’s psychiatric diagnoses, from four separate cities, listed her alternately as schizoaffective, manic, suffering PTSD and, in the notes from the twenty-bed backwater hospital in rural Oklahoma, simply “exhausted” and “emotionally labile.” The counselor at the rehab center said that, though she’d shown symptoms of a variety of psychiatric conditions at different times, a formal diagnosis mattered little. The bottom line was that Enda was periodically psychotic—with or without crack, or meth, or heroin—but the street drugs made her psychosis exponentially worse. Still, Enda had managed to stay clean, live alone, work, and consistently take her psychiatric medication for six months, allowing something like a normal rhythm to return to her days.

*   *   *

Before Marie started the car to go to Enda’s, she called Bella’s salon and made two hair appointments. Then she looked in her wallet. Sixty-seven dollars in cash, one BP gas card, and her household allowance checkbook which, because it was the fourth week in the month, held a mere $229.40. Enda was going to need money if she was indeed moving to Mars Hill, and more than she had here. Perhaps Jimmy was right. How much were they expected to give? For how long? As Marie drove, she came to the conclusion that Enda simply had to contribute more. Maybe, she thought, if Enda had more obligations, more hours than she’d had at the Gulfstream, she’d do better. Once Jimmy saw the girl was doing that, Marie thought he’d soften about continuing to help her financially.

When Marie pulled in to Enda’s apartment complex, she was ready to do battle with her to keep her safe and where she belonged. Wade’s truck was there. Marie hoped that she could get in and out without speaking with him. She was halfway to Enda’s apartment when a sheriff’s car pulled into the lot. Marie saw now, down the landing, that Enda’s door was open. A current of panic surged through her body. Wade emerged from Enda’s apartment. Marie heard a noise like shouting. “Thank God you’re here, Mrs. Moore. I talked to your husband yesterday evening, after all this happened. I told him she couldn’t stay. She can’t stay, Mrs. Moore. Not like this.” Marie heard glass breaking, then music.

She ignored Wade and walked into the apartment. The television was on full blast. Enda, however, was sitting quietly on the sofa, wearing a pink t-shirt stretched too tightly across her bosom. Perched atop her head like a coonskin cap was the pale blond wig. Enda didn’t look up. Nomad was curled on her chest, aggressively purring.

Marie took the remote and muted the volume.

Fern, Enda’s county social worker, a tiny slip of a woman, came out of the kitchen with a steaming mug and set it on the table. She patted Marie’s arm, then went to greet the sheriff.

“Enda, honey,” said Marie “what’s going on?

“I can’t talk with them here,” Enda whispered, and looked to the door where Wade, the sheriff, and Fern had gathered. Marie marched to the door to close it, but Fern quickly stepped inside. She looked minuscule compared to the men, and Marie understood that was why Fern always wore lumpy sweaters and coats—to give her the appearance of bulk.

“Give us a minute, gentleman,” said Fern. Then she closed the door and locked it.

“Thank you for that,” said Marie.

“Mrs. Moore, she’s refusing the hospital right now. There’s a women’s shelter nearby that can take her, but she’s not interested. It may be too late, it usually fills by noon. Maybe you could convince her to go home with you? Until I can locate other housing?”

“I don’t understand. So what if she’s been in the dumpsters! Is that grounds for eviction?”

Fern’s eyes grew wide behind her glasses. “I don’t know anything about that, Mrs. Moore. Off the record, I was called because she has been harassing the neighbors. She thinks they are all with Al Qaeda. She’s been leaving them notes. Yesterday evening she was involved in an altercation. No one is pressing charges, but—”

“I know them from before,” Enda said thickly. “They look different, but they are spying on us.”

Marie lowered her voice. “You know her father won’t have her at home. Maybe a hotel?”

“Mrs. Moore, I think that’s not very likely in her state.”

“Well, I could book her room. I guess I could stay with her, if she needs it.” After Marie heard herself, she felt ashamed of her reticence. “I mean, if she’ll let me.”

“I have a friend on Mars who escaped Al Qaeda. I’m going to live there too.”

“Oh, stop it!” Marie yelled at Enda. “You are not going to Mars! That’s your illness talking.”?Fern rested her hand on Marie’s arm.

“Mars is the homeless encampment—it’s what people call the camp.”

“I thought you said she was refusing shelter.” Marie followed Fern to the kitchen.

“Mrs. Moore, Mars isn’t shelter. It’s just a wooded area, where the people camp. It’s—”

“Oh my God. Why can’t you take her to the hospital?”

“She’s not a danger—to herself or anyone, really. Even temporary commitment—it’s complicated. We can only intervene under certain circumstances. Choosing to be homeless isn’t one of them. Arguing with the neighbors isn’t either.”

“But she’s delusional.”

“Maybe so. Even if she is delusional, that’s not grounds enough for emergency commitment.”

“If you can’t help, why are you here? What earthly good are you?”

Fern’s eyes reddened at the jab. “I’m her caseworker.”

“I’m her mother!” Marie laughed. “This is absurd.” Marie understood Fern had compassion but no power. Right now, that made her useless.

Marie returned to the living room and knelt in front of Enda to catch her eye. For the first time she saw Enda had a small pink duffle bag packed, tucked alongside the sofa. Her red Converse high tops sat beside them.

“Enda,” she said mildly, careful not to let her tone upset the girl, “when are you leaving?”

Enda shrugged.

“I’d like to get you a couple things, honey. Can you wait a while?”

“Mr. Thayer is threatening to evict her today at noon, Mrs. Moore.”

“No. That’s not going to happen,” Marie kept looking at her daughter. “He can’t evict her on such short notice. It’s not legal.”

“It’s easier than you might imagine. Especially with her recent behavior. “

“I told him I am going,” Enda said. “I was going before he told me I should leave. I’m just saying good-bye to Nomad.”

Marie looked at her watch—it was 10:15. “Fern, you tell them if they so much as talk to her or make a move to put her on the street, I’ll—” Marie cast about for a viable threat. “Why, I’ll sue them blind,” she said, aware she sounded more like a television actress than herself. “Enda, Mother is just going out to get you a few things. You wait here. Promise me.” Enda nodded. Her head was bowed, her fat bottom lip jutted out the same way it had when she was six years old and headed to her first day of kindergarten.

“Now, tell me where Mars is, exactly.”

*   *   *

Marie was surprised how close the encampment was—to nearly everything. Her favorite Italian restaurant and her dental office were less than a mile away. So was Enda’s apartment, as the crow flies. To get to Mars, Marie simply parked at Sandy Creek Shopping Center, the upscale shopping mall. There, she crossed a large weedy lot behind the new sixteen-screen cinema and traveled a mere hundred yards down a narrow beaten path through the trash pines. She’d envisioned Mars as a state park, but it wasn’t like that at all. There were tents, some with filthy carpet remnants draped on top, some with blue tarp. The stakes were rusted. A few had clothes lines strung between trees. She walked lightly, fearful of surprising someone. She’d left her purse in the trunk, but her jewelry was still on. She twisted her rings around to conceal the stones, as if that would prevent her from harm.

“Hello?” she called. “I’m a friend of Fern’s. Is there anyone here?” Marie counted twelve tents, some in such a state of disrepair, torn and moldy, that they couldn’t be occupied. One however, had affixed a small cedar wreath to the entrance. A fire area was in a small clearing, and there were sooty melted plastic bottles in the center. Then Marie heard a rustling in the leaves, and she spooked, hurrying back along the path, her mouth dry. Her foot snagged on a fallen branch.

“Hey, lady. Lady!” A young boy ran up to her, from the direction of the camp. He wore blue jeans and a puffy brown jacket. “You’re a friend of Fern’s? Did she send you with the tickets?”

“What? No. I’m sorry, I don’t know anything about tickets.”

“Oh.”

Marie noticed the child looked rumpled, and had a large cowlick on the side of his head, as if he’d been napping.

“Do you live here, young man? How old are you? Ten?”

The boy licked his lips, which were badly chapped. His mouth had a livid red ring around it.

“Why are you here?” he asked. His face, despite its youth, hardened as he studied her.

“I—well, I know someone who wants to live here.”

“No one’s supposed to know.”

“What? That you’re here?”

“My mom and dad will be home soon. We didn’t have school today.”

“OK,” said Marie. She scanned the woods. Was someone waiting to grab her? Was this just a set up?

“They’ll be back from work around five. My mom works right there.” He pointed to Sandy Creek Mall. “Bill, my stepdad, he installs carpet. His boss has a white Silverado with heated seats.”

“Do you need anything?” Marie asked. “Do you want me to ask Fern about the tickets?”

“No! Please don’t tell her you saw me. I’m allowed to. Sometimes they let me stay here with them. Please don’t tell. I don’t want to live with my aunt.”

“Do you like it here?” Marie asked, then immediately regretted it. What sort of answer did she expect?

The boy dragged his foot through the pine needles. “Don’t tell Fern. But if she gives you the tickets, you bring them back, OK?”

Marie was breathless by the time she got back to her car. She dialed Jimmy. When he didn’t answer, she left him a long message. She could understand his desire for Enda to disappear from his life, but she felt certain he wouldn’t want this. Within minutes Jimmy texted her.

His message read: Let her go.

For a few long seconds, the world around her seemed to blur and melt. Marie thought she’d go mad. But she didn’t. Instead, her thoughts quickly focused. There was no way that Enda could move to Mars with only her pink duffle bag. Where would she sleep? Then Marie saw it: Sportsman’s Paradise. In a mere fifteen minutes, Marie bought a camp cook set, bottles, plates, two weeks’ worth of freeze-dried food, a tent, sleeping bag, sleeping mat, and wet wipes. Marie studied the scruffy bearded salesman. Was he homeless?, she wondered. He recommended fuel for the stove, eco-friendly toilet paper, and a rain poncho. He opened and packed everything for her in the oversized backpack, and attached the bedroll below. She wrote him a check for $876.23. It would be days before it bounced. Marie felt Enda would be OK for a few days or longer. Jimmy could be persuaded. Yet, as Marie rushed back to Cedar Grove, with the backpack in the trunk, she wondered if any action by Jimmy could truly alter Enda’s course. She was refusing shelter and medical help because she couldn’t think clearly. And she  wouldn’t be able to think clearly without treatment.

Enda stood in the parking lot of Cedar Grove, her small pink duffle bag tucked under her arm like a football, when Marie returned. Wade and the sheriff were gone, but Fern remained.

“They left when Enda said she was vacating anyway,” Fern said. “That way Wade isn’t formally evicting her.”

“Fern is taking Nomad while I’m gone. Don’t worry, Mom.” Enda wrapped Marie in her arms and leaned her whole heavy body against Marie. “Fern knows how to take care of pets.”

Marie buried her face in Enda’s neck. Her daughter smelled of cigarettes and grape bubblegum. Enda rocked her side to side, and the blond wig slid between them. Marie reached up and cupped her daughter’s head. Beneath the wig there was no bad perm or dye job, and no head injury. The only thing it had covered was her daughter’s disheveled hair. Her baby girl’s hair, graying.

“Enda, honey, wait. I’ve got something for you.” Marie took the back- pack out of the trunk. “I bought everything you’ll need for Mars. Cookware, a sleeping bag, there’s a small coffeemaker, and bags of freeze-dried dinners. Turkey tetrazzini, mac and cheese.”

Enda started walking toward the field just across the way. Marie dumped the backpack on the landing and walked beside her daughter. “Enda, let’s go stay at a hotel. It will be fun.”

“I’m going to Mars. Once I’m there, I’ll send a message.”

“Please, take the backpack.”

“Mom, no!” yelled Enda. Then she stumbled, and kicked a soda bottle from her path. “God!”

Marie quaked with fear. She’d never felt so forlorn. Right then she remembered how she used to nurse Enda to sleep when she was first born. How Marie had marveled at her baby’s tender arms, her glossy red mouth, and fat auburn curls Enda had been born in the spring, when pollen hung thick on the pines and the

air smelled fresh and green. Those early days with her baby, Marie had felt whole, complete in the world. Never had there been another time like that.

Fern gently approached. “I’ll check on her, Mrs. Moore. Most times this is a temporary situation.”

“What happens now?” Marie whispered.

“I go down to Mars each week, Fern said. There’s a sandwich shop near the mall where people go at the end of the day. The manager hands out food. He’s not supposed to, but he’s kind. Sometimes people agree to the hospital or shelter after a while on the street. Enda’s been briefly homeless before. In Oklahoma. This isn’t new to her.” Homeless. Marie hadn’t known.

Marie looked at the backpack, that massive bundle she’d discarded on the stoop, and sat down beside it. Then came the tears. Her sobs felt torn from her, but there were fewer than she expected. When, at last, she was done, Marie positioned herself in front of the backpack, slid her arms through the straps, and clipped the harness around her chest. Then she pulled herself to her feet and trudged across the field toward her daughter’s dimming shape.

Virginia Holman is the author of Rescuing Patty Hearst (Simon & Schuster), a memoir of her late mother’s untreated schizophrenia. It was a Barnes and Noble Great New Authors Selection, and received the Outstanding Literature Award from the National Alliance on Mental Illness. She’s published numerous essays and articles, and her work has been reprinted in the Pushcart Prize, Reading Critically, Writing Well, and broadcast on This American Life. She has also served as a Carter Center Fellow. She teaches at the University of North Carolina Wilmington.

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Between Depression and a Hard Place

Between Depression and a Hard Place

By Anna Blackmon Moore

winter2009_mooreAs soon as I learned I was pregnant again, I shut myself into the bedroom of my two-year-old son, gazed at his train car blanket, his shoes on the floor that no longer fit, his stuffed penguin. I thought about my brain. Then I called my psychiatrist.

“This is a surprise,” she said coldly.

“I discussed the possibility with you at our last appointment, remember?” I said. I had actually discussed having another child with her at our last two meetings. Our appointments occurred only every three to six months and took half an hour; I used them for refills of anti-depressants. Five months before, I had started taking Lexapro, a switch from Prozac, which I had been on intermittently for nearly twenty years.

“I just wanted to ask about my medication,” I continued. “Should I go down to five milligrams? How safe is it?”

“Most women try to get off anti-depressants before they get pregnant, Anna,” she said. She had not mentioned this—not once, not in doctorese, not directly or indirectly or vaguely—in any of the appointments we’d had in the last four years, which is how long she’d been my doctor. During my first pregnancy, I decided on my own initiative to stop taking Prozac but then resumed it in the second trimester. I had not planned to do so, but anxiety, one of the many characteristics of my depression, became too debilitating.

“I’m only four weeks pregnant.”

“Well, I guess it’s too late now.”

Was she in a bad mood? Why was she talking to me this way? Why was I so incapable of asserting myself with doctors? Apparently, she wanted me to believe that I had already damaged my baby’s developing organs somehow, that there was no turning back. Too late now, she had said, since your baby is already ridden with birth defects.

“But they calculate conception by the first date of your last period,” I argued. “So the baby was really only conceived about two weeks ago.” She didn’t know this?

Women like me are hardly alone in their frustrations. Those of us who take anti-depressants and become pregnant are forced to make wrenching decisions about medication. Every piece of literature I have read on this issue, from studies in medical journals to user-friendly websites to sections of baby books, whether the drug in question is an SSRI like Prozac or a psychotropic like Lithium, summarizes the nature of our decision like this: Along with our doctors, we need to decide if benefits from our medications are greater than any potential risks they could bring to our baby’s health. If our benefits win, then we should take anti-depressants. If potential health risks to our baby win, we should not take our anti-depressants.

What a shit sandwich.

By the time I called my psychiatrist, I had already been served that sandwich. I was familiar with it; I had ingested the thing. I was preparing to ingest it again. But if my doctor was going to treat me with such impatience and disdain while I was going through a pregnancy, when women at any level of mental and physical health need as much support as possible, then, I thought, Fuck her. The following week I cancelled our appointment, recalling a poster that my best friend, sixteen years earlier, had taped on our kitchen cabinet when we were roommates in a tiny apartment after graduating from college. The heading was 20 Ways To Be a Strong Woman; below it were twenty bulleted commands. The only one I could remember was the last: “Walk out of any doctor’s office you want.” Instead of walking out, I just didn’t return.

*   *   *

When I learned I was pregnant with my first child, Ian, I was on Prozac. The average daily dose, the one I was prescribed, is twenty milligrams, but sometimes I’d skip a day (or two), sometimes I’d go down to ten, sometimes I’d wean from it altogether. Changing doses of medication without a doctor’s guidance is part of having a mental illness. For some people with severe depression or other severe mental illnesses, changing or stopping doses is a symptom of the illness itself.

I adjusted my dosage because I do not like being depressed. I would prefer not to have this condition. So self-adjusting is how I prove to no one at all (since I do not discuss my adjustments with anyone) that I do not need this drug. I still think I might not. Maybe I just need a good kick in the pants, a transformation of attitude, or time alone in a dark room where I can analyze my worthlessness and all its manifestations over and over again until I figure it out or until it goes away.

Pregnancy, however, made me think about my depression in ways that were less self-absorbed. My thoughts about how or whether I actually had this condition were no longer relevant or even important, I realized, because what if after I gave birth, I dropped into a serious depression? My mother had. She describes it like this: She had me, broke down, and then got into bed. She got out again “when it was spring.” Since I was born in the spring, this means that my mother was incapacitated and largely absent for the first year of my life.

For the rest of hers, she sought and received various forms of treatment at various times with varying levels of efficacy. She has always struggled with depression. As a result, my brother and I have struggled with it, too. (My alcoholic father shares plenty of responsibility here as well but requires too many additional words.) As a young adult, my brother’s mental illness institutionalized him for years; as a teenager, I was hospitalized for a suicidal gesture—I slit my wrist with a dull paring knife—and I was an in-patient in treatment programs for alcoholism and bulimia. I’ve been in and out of therapy since I was ten to “work through” the same “issues” that have influenced my feelings and thoughts for as long as I can remember. I’ve been on and off Elavil, Prozac, Paxil, Zoloft, Imipramine, Welbutrin, and Effexor. Despite my functional professional and social life—I’m a college instructor, a writer, a friend, a wife, a mother—I am always in some kind of emotional pain, or caught in a self-reflective ache, and in general I feel pretty bad about myself, who I am, how I behave, and how I think.

This state of being poses challenges for me and other depressed women when we become pregnant. Just a cursory glance through the various genres of pregnancy literature confirms that during pregnancy, a fetus needs a contented, functional mother. The mental health of the mother is even more important right after birth, because a depressed mother who neither smiles at nor interacts with her infants can easily be worse for them than most of the side effects they might experience as a result of anti-depressants.

And these side effects are a matter of mights. If pregnant women take Prozac or other selective serotonin reuptake inhibitors, or SSRIs, to regulate and adjust the activity of the neurotransmitter serotonin in their brains, their newborns might experience, according to the Mayo Clinic, “tremors, gastrointestinal problems, sleep disturbances and high-pitched cries.” These are withdrawal symptoms and go away within a few weeks of the baby’s birth. Knowledge of this dissipation, though, is hardly comforting to the almost eight percent of pregnant women who are prescribed these drugs during their pregnancies. No pregnant woman, depressed or not, could disregard visions of her newborn shaking uncontrollably or crying like a siren, especially if this suffering were caused by drugs she had passed into her baby’s system.

The possibilities of health risks grow mightier when we consider possible long-term effects on a child whose mother took SSRIs during pregnancy. According to my former psychiatrist, we do not know whether SSRI babies demonstrate a greater incidence of depression, attention disorders, mood disorders, or cognitive problems as children, teenagers, or adults. But I think we have to question the reliability of such implications, anyway: Since mental illnesses are often hereditary, children or teens could get them straight from the genes of their mother, whether she were medicated while pregnant or not. And if teenagers or even toddlers suffer from mood disorders, it would be impossible to prove definitively that fetal exposure to SSRIs was the cause.

What I do know is that my brother and I suffered from mood disorders—big ones—along with all kinds of other psychological and emotional problems; at the same time, while we were growing up, my mother’s depression was never consistently or properly treated. If it had been, I know my mother would not have been perfect, but it is fair to say that she would have been more engaged with her children, more attentive and supportive during our infancy, at least. Our family might have been stronger.

So we’re back to the shit sandwich. Treat it or don’t—which is worse, and which is better? Who knows?

Many doctors advise a weaning from anti-depressants before women become pregnant or early in the first trimester, when the baby’s organs are being formed. Both my GP and former psychiatrist advised me to stop taking them unless I was suicidal. I should “hold out” until the second trimester, they said, when the drugs would likely be safer for my baby. Their opinion is grounded not only in common sense, but also in the memory of the thalidomide catastrophe. From 1958 to 1961, pregnant women in the United Kingdom and Canada took thalidomide to ease first-trimester nausea, filling their prescriptions because the drug’s manufacturer and, subsequently, doctors espoused its safety. The manufacturers, in fact, had not tested the drug, and eight thousand babies were born with profound birth defects, from missing and deformed limbs to unsegmented intestines. According to Sandra Steingraber, in her excellent book Having Faith: An Ecologist’s Journey to Motherhood, what made thalidomide especially teratogenic—a cause of birth defects—was the fact that the drug interferes with the formation of blood vessels and protein production. Just as important was the timing of its ingestion: Pregnant women took it when their embryos were sixteen to twenty-one days old, during peak organ-formation.

As a result, the medical community now has clear directives on medications and pregnancy: Steer clear of as many as you can. The logic of this instruction is obvious. But as a person with a mental illness, I see perspectives and biases emerging on this issue that have little to do with thalidomide and untested drugs and lots to do with how we tend to blame mental illness on those who suffer from it. In a post to “Taking Anti-depressants During Pregnancy” on the Berkeley Parents Network website, an anonymous writer articulates perfectly what I was feeling: “There is a lot of discrimination against treating mental illness in pregnancy. Do you think a doctor would suggest someone with high blood pressure or diabetes just STOP [her] medicine while pregnant? Absolutely not.”

 *   *   *

After the incident with my psychiatrist (who I saw primarily for medication), my therapist helped me by discussing the Lexapro issue with two doctors she has worked with in the past. As I sat in my usual spot on her couch, she informed me of my options: Go off Lexapro completely or stay on ten milligrams; five is non-therapeutic and, therefore, would not help me. Since I had already adjusted on my own to five milligrams a week before, I wasn’t sure where to go from there. I was stuck: If I kept taking such a low dose, I’d be exposing my fetus to the drug, and I wouldn’t be getting any benefit from it. It was ten milligrams or nothing.

“I guess,” I said, “it’s time for me to decide what to do.”

She nodded.

That night, I looked through various articles and websites on Lexapro and pregnancy. I found mostly information I already knew, since Lexapro is an SSRI and the research on these drugs lumps SSRIs together. Eventually, however, I found a public health alert put out by the U.S. Food and Drug Administration in 2006, which summarized the results of two studies published that year. The first, in the Journal of the American Medical Association, tracked a group of women who stopped taking anti-depressants while they were pregnant and a group of women who did not. The women who went off their meds were five times more likely to have a relapse of their depression.

The second study, published in the New England Journal of Medicine, found that fetuses exposed to SSRIs after twenty weeks had a six-times greater likelihood of developing persistent pulmonary hypertension. The disease is very serious and sometimes fatal, but “[the] risk has not so far been investigated by other researchers.” So it would seem that going off Lexapro in the first trimester actually carries less serious of a risk to the baby than my resuming the medicine later on. All right, but what about me? Whose risks finish first?

It was time to decide. But with whom? I live in a large town. We have other psychiatrists, but not many. Even if I lived in an urban area, getting in to see a psychiatrist can take months, especially as a new patient. There were other options—GPs and obstetricians are doctors, of course, but the ones I had seen discouraged medication in general and offered little support. So I made what I thought was the most informed decision I could about my health and the health of my family: I decided to discontinue the Lexapro, at least for the first trimester. For the next week, I took my five milligrams only every other day, and then I stopped it altogether. Maybe I could do it this time.

*   *   *

Now, in my ninth week of pregnancy, I sleep poorly, cry often, and feel deeply angry all the time. This anger has been characteristic of my depression all my life. I have to watch what I say and how I carry myself and how I react for fear of alienating my students, friends, and colleagues. I yell at the dog, snap at my husband, shout at my windshield. With my son, I am less patient. It’s cute when he explores the potential of his toothbrush and brushes the drain, but must he do it every single night? Must he always choose to read The Biggest Book Ever? If I do lose control, I feel disturbed, unhinged, and terribly guilty. The most difficult parts of my day are transitions, which require what feels like tremendous effort of body and mind: bed to bathroom, car to office, desk chair to kitchen, couch to bed. I feel more than ever like I am a failure.

Come on, woman, I hear in a deep authoritative voice of some distant patriarchal figure, pull yourself together. But I’ve been pulling since I was a teenager, and my depression has not seemed to budge for extended periods of time without the help of drugs. I have pulled myself into pieces. I work against a cavernous sense of negativity, and this in particular has never felt transitory. I cannot therapize it away, or overcome it, or counter it through cognitive exercises. As I get older, my depression feels more and more biological, more deeply folded into the fluid of my brain. Stopping medication when my hormones are in flux, when I’m sick, when I’m teaching a full load, when the stress of another baby grows by the day … this seems more and more like a bad idea, my husband says. And I agree.

So yesterday, I went to my unaccommodating GP and asked for Prozac. Prozac has been around a long time, so doctors and researchers have published hundreds of studies on it. Prozac and Zoloft are the safest of all SSRIs.

During my first pregnancy, I took twenty milligrams of Prozac per day in the second and third trimester. I also breastfed my son while I was on the same, consistent dose. When I was in the hospital, recovering from childbirth and learning to breastfeed, several nurses expressed concern. What were the possible effects of Prozac on the baby? Did I know? Had I consulted with my doctor? (Why they didn’t learn the answers themselves and then share the results with me, since I was consumed by worries of feeding my baby properly while fuzzy with painkillers and lack of sleep, I do not know. Perhaps they expected more from me.) I explained that I felt very safe in what I was doing because of what I was told by a lactation consultant in the hospital following his birth. The consultant explained that any side effects Ian might have—the same he might have from exposure to Prozac in the womb—would go away within a month. (Ian was a product of the good odds: He experienced no side effects and seems fine in every way, developmentally and temperamentally.)

According to the specialist I spoke with at the nonprofit Organization of Teratology Information Specialists (OTIS), to which I was referred by the FDA’s Office of Women’s Health, SSRIs are indeed the most studied of all the anti-depressants on the market.

The specialist started answering my questions by first explaining that the baseline of birth defects for every pregnant woman is three to four percent. This percentage goes up with factors like age, health problems, and the genetic history of the mother. Then she summarized what the studies say about mothers who take SSRIs during pregnancy. During the first trimester, women who took high doses (between sixty to eighty milligrams) of Prozac increased their risk of having a baby with a low birth weight by one percent. (These results were not found in newborns whose mothers took other SSRIs at similar doses.) The babies of mothers who take SSRIs in the third trimester have a ten to thirty percent rate of toxicity withdrawal—and the withdrawal is limited to the newborn period.

Okay, I thought. Okay. I felt suddenly relieved—not because I thought SSRIs might be totally safe, but because I understood the studies more clearly. I realized later that what I felt was not a rush of relief; what I felt was a rush of informed.

*   *   *

The studies I have read on anti-depressants and pregnancy are structured, more or less, like this: Over a period of years, scientists and doctors gather records on a group of infants with birth defects and a group of infants without birth defects. The doctors then conduct interviews with the mothers or review medical documents to learn about what drugs the mother took before and during their pregnancies. They then compare the interview results or the medical documents to the birth defects and look for correlations.

They have indeed found them. One study of 13,714 infants (9,622 with birth defects and 4,092 without) was published in the New England Journal of Medicine in July 2007. The correlations the authors found between the infants with birth defects and SSRI exposure were very low—low enough to conclude “maternal use of SSRIs during early pregnancy [is] not associated with significantly increased risks of congenital heart defects or of most other categories of birth defects. [We observed] associations between SSRI use and three types of birth defects, but the absolute risks were small, and these observations require confirmation by other studies.”

This study and others like it did not keep my GP, when I saw her on my Prozac mission, from suggesting that she would “prefer” I didn’t take the drug until week twelve or thirteen.

“But if you can’t make it,” she said, typing notes into her computer, “I’m okay with prescribing it now.” She then stopped typing and looked right at me. “As long as you know the risks.”

My doctor has my baby’s health in mind, I realize. But—way to be supportive.

“Perhaps I’ll just hold the bottle lovingly for the next few weeks,” I said. “Like a teddy bear.”

She laughed.

I understand, I went on, that as a general rule women should stay off everything in the first trimester. But isn’t there any evidence that a depressed mother can also be harmful to her fetus? Not really, she said, because that’s harder to quantify. What I understood her to mean was this: We see toddlers with emotional problems; we determine that all of their mothers were depressed or anxious during their pregnancies. But since so much happens between birth and toddlerhood to influence a child’s emotional state, it’s much more difficult for anyone to verify a concrete link between maternal depression and childhood mental health.

So I gaze longingly at my Prozac. In only a few weeks, it will be building in my system, doing whatever it does to make me feel better. And I can do it. I can make it. I am like a runner with burning pain in her legs, a few inches from the finish line, or a dieter warding off desires for a piece of chocolate cake.

These metaphors are absurd, unhelpful, and demeaning. I am trying, in acting like a strong woman, in making my decision while consuming a shit sandwich, to reject this language and this way of thinking. My difficult doctors were right: There’s a big difference between suicidal and too sad, too sleepy, too pissed. Yet the mother and her body and her mind—especially her mind—are the center of the family; they are its source, its foundation. Mothers need to be energetic, positive, patient, loving, and as present as possible. If I need drugs to embody these adjectives, then I need to take them. My children need me to take them. The medical community should direct and inform my taking of them as much as it is able to, but for now I have to keep my expectations of their knowledge and especially their support fairly low.

Women often have to endure. To tolerate. They also have to negotiate, evaluate, assert, reassert, assess, deliberate, and wonder. And cry. Because as I make the decision to take drugs, to go on Prozac as soon as the last day of week twelve has passed, I cry.

Bullet #21 on 20 Ways To Be a Strong Woman: “Make your decisions. Then weep.”

 *   *   *

Author’s Note: My daughter, Adele, is now four months old. She’s a champion cooer, nurser, and puker, and she’s been doing beautifully since her birth. The rest of my pregnancy with her was very hard—I was chronically ill with colds and bronchitis, which affected my mood significantly. When I was about six months pregnant, I decided to go up on the Prozac—from twenty milligrams to thirty, and it helped get me through and be more present for my now three-year-old son. 

In retrospect, I notice how doctors, when they discussed anti-depressants and my pregnancy with me, emphasized the safety of the baby in my body but forgot entirely about the needs of the one already here. Mothers need to be functional all the time, pregnant or not; along with their gestating babies, they and their families also need to thrive.

Anna Blackmon Moore is a writer and writing instructor in California. Her blog is dearadele.wordpress.com/.

Brain, Child (Winter 2009)

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Visiting My Teenage Daughter in the Psychiatric Ward

Visiting My Teenage Daughter in the Psychiatric Ward

By Susan Dickman

CorridorThe door clicks open, and I begin the familiar drill: sign in, deposit coat and bag in a room which the attendant will lock behind me. I follow the small herd of parents shuffling down the hallway to the common room, where the residents will enter from a separate door. Within moments we meet in all our awkward embraces and hellos.

A smile plays on my daughter’s face when she spots me, but I know better than to hug her. She allows me to deliver a brief kiss to the forehead, and then we settle into chairs, trying to knit together a conversation from stray and tangled comments. What she ate for lunch. The winter storm that is brewing. The latest antics the cat has been up to. All normal conversation for the adolescent psych ward, where we are all in collusion, pretending that to be there is to be utterly normal.

My daughter’s hair is greasy, and she has been wearing the same black corduroys for days. Yet she still can, at this point, pass for your average fifteen-year-old teenager. Or are they all this much at-risk, ready to drop off the edges of their fragile little worlds?

After a few minutes of conversation that dribbles off into nowhere, I suggest a game. Scrabble is something solid to land on, with its wooden alphabet letters perched on wooden benches, with its highly detailed rules and mathematically designed board.

It is her third stay in the ward, not counting the out-patient program at another hospital last year, when everything came to a crisis point in February. She has the idea she is in because she became suicidal; her father and I thought it was because she refused to go to school, and then threatened suicide when he took away the television remotes. Our daughter sincerely believes her own story. This is not the first time the phrase “distorted thinking” has appeared in my head. It will take her father and me a few days to realize that, to her way of thinking, there was a real connection between no television and suicide, that even getting to this psychic place of what could have remained a teenage tantrum spelled death for her, because her mind works like lightning and moves from thought to thought without weighing any of them. Suddenly, without knowing how or why, she is in fight or flight, cannot evaluate clearly what is a threat and what is not, and then all is lost. Or she believes it is. And because she has been in this place—the hospital, this way of thinking and reacting—she assumes she will be there again. And she does, and she is.

 

***

The other families are playing Scrabble or cards, fooseball or talking in soft voices over meals they have brought in and have had a staff member check. For what? I’m never quite certain. The room hums with the steady sound of people trying to relate to one another. Once in a while during a visit a resident will suddenly raise a voice in anger or pain, and a staff member will intervene with a gentle directive for the resident to leave the common room. It is jarring when a visit ends abruptly—a raised voice, a threatening tone, pathologies playing out in the genteel atmosphere of the visitors’ hours.

Sometimes I look around me and spot my wish-list mother-daughter duo. They’re playing Boggle and laughing, whispering jokes and secrets to one another. The mother rubs the daughter’s back and embraces her in a long, loving hug. Hugs don’t come naturally to my daughter; she does not like being touched. Sometimes I can administer one gently, as long as I ask, but they are rarely, if ever, exchanged. When she was a very young child she must have parroted back the “I love you” of a toddler, but I don’t remember.

The day after she arrived, the weekend psychiatrist asked a battery of questions. “Diagnosis?” “Take your pick,” I tell her. “Depression, Generalized Anxiety Disorder, Mood Dysregulation, Bipolar II.” I save that one for last; no one really wants to say that label, even the softer II designation. “Perhaps with a touch of Asperger’s,” I continue, repeating the words of the weekday shrink who has worked with us during the other visits, though I am not certain whether I believe these last two.  “And an as-yet undiagnosed Processing Disorder thrown in as well.” The professionals, and we are ensconced in a team of good ones, are not necessarily eager to diagnose. The teenage brain is plastic, they tell me: growing, fluid, highly at-risk and yet able to bounce back, morph and change. Still, when pressed, the outside-the-hospital shrink will admit to characterizing my daughter as bipolar, even while cautioning against labels, which she says can change. Me, I love labels by this point: they inform, guide, direct. It’s just hard to utter them for fear of people’s reactions.

“She’s bipolar,” I want to tell the people in our lives. “And she is also her own beautiful self: bright, artistic, talented, funny, and fun to be around when not raging.”

Still, I want to know this: Where is she? She was a stunningly gorgeous and artistic child with the ability to walk into a room and suss out every minor social nuance occurring. She drew whimsical pictures of creatures pulled from her vivid imagination. Intensely musical, she arrived in this world with perfect pitch and the ability to play, by ear and with two hands on piano, anything she heard. She still plays, sings, composes, writes screenplays, stories, film treatments, and graphic novels, though completes nothing.  Always a bookworm, she has barely read anything in two years. There is static in her head; her emotional life takes up most of the grey matter. Where did she go?

We thought we were guiding her. We enrolled her in art classes, music classes; she played soccer and joined an area choir. The house was littered with her sketchbooks and drawings, her stories and comics. She went from violin to guitar and began composing her own songs.

The academic side of school never impressed her much, though she is bright, the kind of student who drove teachers crazy because they knew she could do better work if she tried. With a high-achieving older brother, we didn’t want to pressure her, and figured she would find her own path in school. But something held her up, and her mind began to appear less and less organized. Differently organized. Something began to seem wrong.

How did this happen? I want to know. My daughter was a planned pregnancy, a hoped-for child. I ate well prenatally, was happily married, and gave birth to her at home after a rather brief and normal labor. I breastfed and stayed home with all three children, working part-time for years. The house was filled with books and music. I fed them organic food and baked my own bread. We sat down to dinner as a family every night and didn’t watch television or spend much time at the computer.

Of course, her father and I hadn’t planned on divorce. And so I think about what might have been red flags way back when. At age five, upset by something minor, she explained away her extreme behavior by claiming she was an artist. I remember her anxiety at day camp, and the time she threw a block so hard it broke a window. I think about the blank fuck-you stare she gave the camera in so many photographs, the subversive humor, and the strangely quirky drawings she did even as a young child. I think about my parents’ decades of depression and my father’s inexplicable rages, my brother’s drug use and brother-in-law’s behavior problems at school. I consider my own struggles with depression and mood swings, wonder if I might have been diagnosed bipolar at some point. Except that I wasn’t, and instead, although it took me well into my forties, joke about being a poster-child for therapy and anti-depressants used at the right time. As a child I did not rage publicly or refuse school. I didn’t push boundaries and move into the realm of special education. I was too afraid to assert myself to that degree. I was an unhappy and anxious child, but apparently not to the extent that my daughter is.  But now I am talking about myself, not her. And this is her path, her story, her life, and her illness is not my doing. And still I am defensive.

***

I had taken the highway up to the hospital, and Green Bay Road, which meanders through Wisconsin, back down. The snowy roads pull me past picturesque streets along winding ravines. The last time she was in the hospital, in summer, a statuesque buck suddenly bounded out of the surrounding scrim of woods at dusk, standing for a moment in the crosswalk of the quiet moneyed suburbs of the north shore. Now, crows wind in circles toward the frozen lake. Houses are dusted with new snow, and arctic temperatures are expected by nightfall. The winds have picked up to 40 miles an hour. But my daughter is safe and warm inside the adolescent psych ward.

And the truth of the matter is, my daughter is journeying into another landscape. We can only skirt the edges of the territory she has begun to traverse; we cannot go there with her. We can love and support and do our best to guide her, take her to appointments, try to keep her healthy, and continue working on being the parents she needs and not the ones she simply got. But we have to watch her walk out into this strange and troubled land without us, until she is ready—one day we hope she will be—to walk back to us, whole.

The evening she returns home she picks up her guitar and begins singing a tune she wrote with another repeat resident. Her sweet voice is full of light and mirth as she sings lyrics about the foibles of her sojourn in the psych ward. Like she did the last time she ended up there, she steadfastly refuses to cut-off her hospital bracelets. She is certain they will act as a charm against another stay.

Susan Dickman has most recently published work in Best of the Best American Poetry, Lilith, and Intellectual Refuge, and is the recipient of three Illinois Arts Council awards, as well as a Pushcart nomination.

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Something to Think About: Parenting Children with Mental Illness

Something to Think About: Parenting Children with Mental Illness

 

Nutshell logoAccording to the National Institute of Mental Health, a government agency dedicated to medical research, at least half of all cases of lifetime mental illness appear before age fourteen. The National Alliance on Mental Illness says 1 in 5 children between the ages of 13 and 18 live with a severe mental illness. Parents who are raising children with mental illness must contend with social stigma, lack of psychiatric support, and a dearth of appropriate interventions. Yet we hear very little from those parents and kids who are struggling except when the cases are outrageous and tragic. I brought together two moms who are parenting children who are mentally ill and who are out-spoken advocates for greater support and information.

Chrisa:  I’m Chrisa Hickey. I’m mom to three kids and legal guardian to a fourth. My oldest is 23, and our biological kid. Our next is Tim, 19, adopted at birth, diagnosed Pervasive Developmental Disorder at 4, Bipolar at 8, and Schizoaffective at 11. Our daughter is 18, adopted at age 4. She has Reactive Attachment a Disorder and epilepsy. I am also guardian to E, 17, who is a precocious teen diagnosed with Bipolar Disorder. I blog about parenting kids with mental illness at www.themindstorm.net and I co-founded a Facebook support group for parents of children with brain-based challenges that currently has over 600 members.

Julia: I’m Julia Roberts and mom to two kids with special needs, including a boy teenager at 14 and a girl preteen age 11, who have an array of differences including mental illness. A vision disorder they share, our girl has an additional vision disorder, they both have kidney disease (ARPKD) which led to kidney transplants at age 8 and a liver disease (congenital hepatic fibrosis), learning disabilities and our son has a depression with suicidal tendencies, Post Traumatic Stress Disorder, anxiety and ADHD with severe impulsivity.  I co-founded a site for families touched by special needs, www.supportforspecialneeds.com, where people come to share, gain insight and hopefully laugh.

Dawn: What are the greatest challenges parents of children with mental illness face?

Chrisa: The biggest common theme I see for families is that they either can’t find doctors to help them, or can’t get doctors with any experience/expertise in treating children. 50% of all persons with mental illness start showing symptoms before the age of 14 (per the National Association of Mental Illness), and there are less than 7,000 child psychiatrists. Unless you live in or very near a large city, finding a doctor who has experience with childhood onset mental health issues could be a 4-6 week wait. If you’re suburban or rural, forget it—you might be 100 miles or more from the one in the area.

Julia: I’ve generally found that people are afraid to treat complicated kids. In addition, for us, there was a fear of doctors for mental health because we didn’t want to be judged on what we were or weren’t doing. We literally stumbled on our current doctor when we had to admit Gage because he was suicidal. We consider ourselves lucky.

Chrisa: If you have a child in crisis, you need a bed in a decent facility. It’s not uncommon for a parent to post to the support group that they are messaging us from their phone after 3 or 4 DAYS sitting in an ER with a wildly unstable child, waiting for a bed. The availability of beds on psychiatric units has been rapidly declining over the past two decades. If you can get a bed, you can’t get your insurance to cover it unless your child is in “imminent danger.” For some reason, preventative care is all the rage for insurance companies, except when it comes to mental healthcare.

Julia: Our doctors that deal with the organs and body often clam up when we discuss Gage’s mental health. When Gage was suicidal and we were begging them for help they basically said they couldn’t do anything. They didn’t even have a list of doctors who might work with complicated kids. Same with our pediatrician. We basically were on our own to find our own help.

Dawn: Can either of you speak to prejudice you’ve faced from parents of typical kids? What do you want these parents to know about your and your kids’ experiences?

Julia: It’s really difficult to see adults treat my son differently. I’ve had to approach adults about their bias and in several cases, completely cut them off. In a lot of cases the adults were raising kids that also treated my son unfairly.

We were very fortunate to have a few families who were willing to encourage their kids to befriend my son. He had one special friend through the worst times. Laura accepted Gage the way he was in all of his wonderful oddness; this happened because of her parents. They showed compassion towards Gage and Laura followed suit.

Chrisa: I remember when Tim was eight he wanted to play tackle football, really badly. So we decided that he could if my husband could be at practice every day. We were up front with the coaches and other parents about Tim’s condition, and I can’t say they weren’t nervous, but they didn’t let on. Tim made friends with the other boys on the team and they had a great year. The following year the league made sure to put him back on the same team. The plays were getting more complicated, but the kids got in the habit of the boy playing the position next to Tim giving him instructions as they set up on the line—they figured that out all on their own.

Julia: When Gage had his most horrific time a school administrator asked me not to blog about him because they were worried the kids would hear parents talking about him and then take it out on him at school. While I very seriously did consider not blogging about his mental health (for a few days) in the end I decided to keep blogging and told them that students and parents were already talking about Gage and I wanted to share the story and the truth.

I learned at the time there were parents approaching the administration requesting our son be removed from the class he was in and the school all together. Luckily, our principals were supportive of Gage and his quick return to school and routine after his admittance into a psychiatric hospital.

Dawn: What do you most want people to know about your children?

Chrisa: I think I’d want them to know my kid is a kid like any other kid. And when you get to know him, he’s a pretty cool kid. Just ask the kids that have gotten to know him. Those boys never let Tim’s “oddities” stop them from being his friend. Even as they got older and Tim couldn’t play football anymore (too much anxiety, not stable enough), they still fist-bumped him in the hallway at school and did boy scouts together. We moved away from that town when Tim was about 12 but he has kept in touch with a few of those boys. They always say, Tim is their friend; he’s not his “quirks.” I learned from that. We are very up front with Tim’s diagnosis. People are often taken aback—he’s not the stereotype they expect.

Julia: The thing I want most from parents of kids around my son is to be open. Be open to hearing about the issues we have and encourage your child to be open as well. Kids need friends and connection. When a friendship happens between a child with mental illness and a typical child a special thing happens between them. For the child that is different it means validation and comfort and for the other child it means they have a personal experience getting to know someone with gifts that few people see. Our son really saves his best self for those who accepted him for him.

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Birch Whisperer

Birch Whisperer

By Debbie Hagan

iStock_000027977692SmallAbove the black pines, above the rock crags, above the frozen streams I soar.  Eyes shut, I am armless, legless, bodiless, weightless—a spirit cut loose, suspended over treetops. My nostrils fill with the sparkles of mountain air, and miraculously this lifts me so I’m floating higher and higher to a sunnier, more joyful place.

A sharp jerk and I awaken to realize I’m in a chairlift scaling the side of Sugar Loaf Mountain—ascending 1,400 feet. From a small cable, I dangle with my fifteen-year-old son who wonders why we’ve stopped. A pile-up on the off-ramp? A ski patroller loading a gurney? A mechanical failure? I look to the tiny cable that holds our enormous weight, and I think it’ll start in a minute. It always does.

I look to my son. Icicles dangle from his blonde chin hairs. He’s strangely stiff, his ski gloves iced to the restraining bar. I consider poking him just to be sure he’s okay. Then fog rises behind his goggles, and I know at least he’s breathing.

“Are you having a good time?” I ask.

I listen for that Mickey Mouse-high, ever-chipper voice that used to beg me for one more ryn.

He grunts, and his frozen face expresses what his lips can’t seem to say, Yeah right, Mom, I’m lovin’ this—freezing my ass off, sitting in a God-damn metal chair blown about by a Nor’easter.

Two more runs, I tell myself. Then I’ll let him go back to the condo, play his video games—whatever makes him happy. I just want this to be fun.

Then my heart sinks. I see poking out of his left ski glove, his hospital wristband, the one he wore four days ago in the psych ward.  I try to think of something happy, like the time we raced down the slope to see who would end up in the lodge first. We’d hockey-stopped almost simultaneously, defrosted over mugs of chocolate, and then laughed at our whipped cream mustaches. It was fun, wasn’t it?

Now I take my fingers from my gloves, roll them into fists, and think, Oh God, when will this chair ever start?  I can’t stand this endlessly waiting. Finally, I explode, “I see you’re still wearing your hospital bracelet.”

Instantly I want to take this back.

Connor stares at me.

I expect a snide remark, but he just lifts his shoulder. “I don’t know why I wear it. My name’s worn off.”

“Oh.”

Minutes drag by. More silence, more waiting. We dangle as I stare at the ground—at least 100 feet below. So close, but so far.

“How long are we going to be stopped?” Connor asks as if he thinks I have a hotline to the lift tower: Let’s see, one minute, thirty-two seconds.

The truth is I don’t know. I don’t know what’s going to happen today, tomorrow, or even within the next thirty seconds. I hope. I wait. I guess. But nothing is certain. There’s nothing to do, but sit here in the cold and wait.

Suddenly the chair lurches, and we’re moving—skimming above trails cut by skiers and rabbits whose prints crisscross as if they can’t decide where to run.

Another minute passes, and I see the off-ramp—and I feel confident, just fifteen seconds and we’ll be free. I push up the restraining bar, which groans as it hits the back of the chair and gives us a good shake. I organize my poles, straighten my skis, and imagine us turning around the bend, sailing down the ridge, flying in the face of all our worries, letting them blow right over us.

But the chair stops again. We bob up and down. I grab the side. There’s fifty-foot drop in front of us.

My eyes shoot to my son.

He doesn’t appear scared in the least. In fact, he looks as if he’s caught up in a dream, staring down at the gnarled birch branches. I follow his gaze. The dark, wind-twisted limbs look like devil fingers curling towards us, coaxing us down.

Connor leans slightly forward, and then cocks his head as if he’s trying to hear them whisper.

He asks, “Do you think I’d be hurt if I jumped?”

Debbie Hagan is a freelance writer with more than 500 published articles and columns, she is also a Manuscript Consultant at Grub Street in Boston, Massachusetts.

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The Boulangerie

The Boulangerie

By Sue Sanders

Art The BoulangerieI pulled open the door to the boulangerie and it hit me at once — a yeasty aroma mixed with the tang of burnt sugar that tickled my nose. I held the heavy glass door for my 4-year old daughter and as she entered, she inhaled deeply, a smile slowly spreading across her face. We stood in line and waited, oblivious to the conversations around us in French, studying the display case in front of us. When it was our turn, we chose two almond croissants, still warm and dense and dusted with powdered sugar. I remembered the last time I’d bought these pastries in Paris.

In the late 1980s, my first husband and I paused during a trip around the world to settle in Paris for a year. He wasn’t yet my husband — we’d met in college and had only been out a few years. Convinced marriage didn’t apply to us, we playacted bohemians in our tiny apartment on the fourth floor of a timbered eighteenth century building. I found a job teaching 4 and 5-year olds English and he wrote, filling spiral notebooks with stories and poems. We made friends — other expats and Parisians — and stayed up late, drinking bottles of red wine and eating meals we’d painstakingly prepared with friends in their small kitchens. We walked home late at night on cobbled streets, the Eiffel Tower lit up in the distance like a Christmas tree.

We were so very young. Years later, after the marriage and the baby, after his mental illness and the hospitalizations and my hope that he’d stay on his meds and get better had evaporated — I left, a newly single mom with a just-turned three-year old. Somehow, Lizzie and I got through that first year, surrounding ourselves with friends and extended family. I kept us busy so I wouldn’t have to think too deeply about anything as scary as the future.

When Lizzie turned four the following February, I wanted to do something special, determined to make her first birthday in our new, smaller family an unforgettable one. She was fascinated by Japan and France. It was a lot less expensive to fly to Paris than Japan. Besides, I wanted to make the city mine again — to make new memories with my daughter to build upon the older ones. In a way, ghosts brought us to Paris — I wanted one of my favorite cities to be filled with living recollections, and to exorcise phantom memories of the past. We’d create new memories, but with almond croissants instead of madeleines I scraped up money for airfare and found an inexpensive pension near my old neighborhood. Lizzie spoke “French” to her doll as I packed.

Our first morning in Paris, we woke on the sagging double bed, still jet-lagged but excited. Although it was winter, it wasn’t the Parisian weather I remembered — gray and drizzly, with a dampness that crept into my bones and lodged in my marrow — instead, the sun shone brilliantly. Lizzie grabbed her Madeline doll, and we went downstairs for coffee and hot chocolate. She carefully placed Madeline on the chair next to her, which screeched across the hardwood floor as she pushed it in. She broke off bits of baguette to feed to her doll, wiping its mouth with the white cloth napkin after she’d eaten her fill. Petit déjeuner finished, we were ready to explore. Holding her hand, stroller strung over my shoulder like a shotgun, we meandered through the streets, no destination in mind. We flitted in and out of small museums and cafes, stopping to frolic whenever we saw a playground. Lizzie hopped into her stroller when she got tired, and it bumped along the cobblestones.

Some sort of automatic pilot brought us to my old neighborhood. Although it had been more than fifteen years since I’d lived in Paris, some part of me seemed to know just how to find it. My old street appeared smaller than I remembered — it was actually an alley, Cité Dupetit-Thouars. I wondered which of my other memories were also smaller in reality. The apartment building looked scruffier and less well-kept than my mental snapshot. Seeing it helped bring my remembrances of life back then into focus, unlocking thoughts I’d carefully sealed away after our marriage sickened and died. Lizzie seemed uninterested in my old apartment and my life before her, and started to fuss that she was hungry. I turned around and found the boulangerie — our old boulangerie.

So there we were, in my old bakery, inhaling new memories. The shopkeeper carefully placed our almond croissants in a crisp white paper bag that he handed to us in exchange for some Euros. We left, wandering to the park across the street and settling onto a wooden bench. My daughter’s legs were too short to hang over the edge, but she kicked them in anticipation of her treat as I opened the bag and let her pull out a pastry. Powdered sugar rained from it. I took the other out and we clicked them together — a sort of “Cheers.” I watched Lizzie’s face as she tentatively took her first bite. She slowly chewed, looked delighted, and quickly took another bite, rapidly finishing her pastry. I took my time, savoring mine, remembering all those years ago when my ex and I used to eat almond croissants as part of our Saturday morning ritual. I’d gather up francs and head to our boulangerie while he would make the strong black coffee we loved, heating milk that transformed it into café au lait. I’d pick up the International Herald Tribune, a splurge, and two croissants and walk home. We’d sit, cross-legged, on the floor pillows we’d sewn from fabric we’d found discarded in the garment district, breakfast and newspaper spread out on the low Moroccan table, the smell of freshly brewed coffee mingling with the scent of the sugary pastries. We had all the time in the world. It was perfect.

That February afternoon, after my daughter ran off to play with French preschoolers on the jungle gym, I finished the last bite of my croissant. It tasted exactly the same as I remembered, even though everything else was different. I smiled, as I watched Lizzie chasing a new friend. Paris was mine again — and now it was Lizzie’s, too. And it was perfect.

Author’s Note: I wrote this essay to show how revisiting Paris helped me reclaim a place and an experience I thought I’d lost forever. Traveling with Lizzie made the city new again — and I loved seeing it through her eyes. She’s thirteen now and, although she’s outgrown playgrounds and carousels, still loves almond croissants.

About the Author: Sue Sanders’s essays have appeared in The New York Times, Salon, Family Circle, Parents, Babble and other local and national magazines. Her first book, Mom, I’m Not a Kid Anymore, a collection of essays about parenting her preteen/young teens, will be published in May 2013.

 

Along for the Ride

By Camilla Medders

summer2008_meddersJon, Chloe, and I are driving home from Chloe’s horseback riding therapy. It’s a forty-minute drive past hilly cow pastures, over brown stagnant streams, and through tiny crumbling towns. Jon is concentrating on the winding road, and I am thinking about the chores that are waiting for me at home. Chloe, who is three, is watching for oncoming traffic. Oncoming traffic is one of her favorite things. If a car is the right shape and color, and especially if it has its lights on, she giggles. A few minutes ago, Jon tried pointing out a truck to her, but all he got was a small polite smile. Apparently, the traffic game is private. Parents are not supposed to play.

We drive out to Horses for Healing every Thursday so that Chloe can spend forty-five minutes lying and sitting on the wide back of an old draft horse named Frank. A teenage volunteer leads Frank around the arena, and the therapist and I walk on either side, supporting Chloe with all four of our hands because she can’t sit by herself. Chloe has cerebral palsy, which means her body is like a wooden puppet without strings, her muscles both too stiff and too weak to allow her to move or balance easily.

While we made our wide figure eights around the ring, Jon was sitting with another parent, the mother of a little girl with spina bifida.

“That other mom said something kind of strange,” says Jon as the car rolls over a hill. From the backseat, Chloe giggles at a red truck.

“What’s that?” I ask.

“When I told her Chloe has CP, she said, ‘Is she, like, happy all the time?’ “

“Uh-huh,” I say. I think I know where this is going.

“So I say, ‘Yes, actually she is.’ And she says, ‘Because we know a guy who has CP and he’s always happy. I wonder if it’s related.’ Isn’t that a weird thing to say?”

“Yeah, it is,” I say. “I’ve heard that before, though. It’s some kind of bizarre stereotype.” Now there’s a long line of traffic coming at us. The first car is unremarkable, a gray lump with its lights off, but the second vehicle is a big, black SUV, and this gets Chloe going so much that she laughs at the next six cars, too. Jon and I smile at each other.

The first time I heard that people with cerebral palsy were always happy was right after Chloe was diagnosed. At least two people told me they knew kids with CP. “And they’re such wonderful people,” they said. “There’s just something about them. They’re always happy.” Of course, I dismissed it. It seemed like such a ridiculous thing to say: Having a brain injury at birth makes you happy. At best, it was some sort of developmental disability myth, like “people with Down syndrome are so friendly” or “people with autism are good at math.” At worst, it sounded like condescension, as if people with CP didn’t know better than to be happy, or as if they were expected to be so unhappy that just making it through the day made them seem extra happy. I decided this was just another strange thing that people say when they find out you have a child with a disability.

Except that as Chloe got older I realized that she is happier than other kids. She’s always finding things to laugh at: the way a bank teller shuffles papers, her father’s habit of talking with his hands, my imitation of her preschool teacher. As we walk through the grocery store, you can see her smile reflected on the face of every person we pass. She doesn’t even mind when other kids take her toys. In fact, she throws fits so rarely that when she does, I usually assume she’s sick. At first, I worried these were signs that she was less intelligent, that the brain injury that distorted her muscles was clouding her mind. Now that she’s older and able to communicate better, I know that’s not the case.

I’ve decided that Chloe’s so happy because, unlike most of us, she accepts that much of life is beyond her control.

Of course, saying that Chloe or anyone else is “always happy” is an exaggeration. This evening, for example, she whined and whimpered when Kerri, the hippotherapist, rolled her over on her stomach. It’s hard for Chloe to lift her head when she’s prone, and she hates not being able to see what’s going on, especially when Kerri and I are calling her name, begging her to pick up her head and smile at us.

When we were finally done with the prone exercises, Chloe got to sit up on the horse where she could easily turn her head from side to side to smile at Kerri and me. “Yeah!” she yelled, using the only word she can always say clearly. Although the horse is so tall that Chloe’s head is above mine, she’s never afraid. She has no fear of large animals, no fear of falling. She puts her trust in all of us: me, Kerri, Frank, the teenager whose job it is to lead Frank. She knows we’re all here just for her.

Children with moderate or severe cerebral palsy experience their first years differently from typical kids. For most kids, getting older means gaining control. A typical infant learns to grab at toys, then to crawl wherever she needs to go. Soon, she learns words she can use to tell her parents exactly what she wants. Every time a child gains control over some aspect of her life, this control becomes precious. A toddler who has learned to walk cannot bear to sit still in the chair that she loved just a few months ago. A three-year-old who has learned to use complete sentences will no longer be content to watch the world without comment.

And control is addictive. The more we have, the more we want. A child who conquers her toy box now wants control over her meals, the TV, other children, her parents. These parents, determined to guide their offspring from a chaotic toddlerhood into a well-mannered childhood and, eventually, a productive adulthood, struggle to maintain control over her. The child and her parents behave as if control were a commodity they can collect, build up until it safely covers their entire lives. It will take years for them to unlearn this, if they ever do, and in the meantime, every unpredictable event is a chance for them to lament the fact that they don’t have enough control.

Chloe, on the other hand, is developing mentally and emotionally without developing much physically. At two years old, she had the motor skills of a newborn. She could not use her hands, lift her head, or make any sound besides crying. She had to rely on us to move her from place to place, to bring her toys, to decide what she ate. For the most part, that was okay with her. After all, she’d never known anything else, and even though she had little say in the details of her life, she was always cared for. In her first couple of years, instead of learning how to change and control her world, Chloe learned to accept it the way it was.

In his essay “Giving up the Gun,” Andre Dubus admits that he carried a gun for thirteen years—not for his own protection but to be ready in case he came across a rape or a murder in progress. He decided to give up his collection of guns after a car accident left him unable to walk. At the end of the essay, he explains,

I have written all of this to discover why, sitting in my wheelchair on a train, I gave up my guns. But I do not know … My body can no longer do what I want to do, and it cannot protect my two young daughters, and my grandchildren, from perils I used to believe I could save people from. I have not learned the virtue of surrender—which I want—but I have learned the impossibility of avoiding surrender.

The only way to fight the addictive quality of control is to realize how little we actually have, and the best way to do this is to have our control blatantly denied. This terrified Dubus, but Chloe isn’t scared. When it comes to learning the virtue of surrender, she’s a lot further along than anyone I know.

People are always commenting on how “good” Chloe is, especially when we are in public. When I’m in a cynical mood, I want to tell them she’s only good because she doesn’t have a choice. I suspect that by “good,” they mean she’s not doing the sort of things other three-year-olds tend to do in public, such as running around and talking loudly. But Chloe can’t do these things, I want to tell them. If she could do anything except sit quietly in her chair, she would. She just doesn’t have a choice. But then I remind myself that she does have a choice. She has to sit in her chair, but she doesn’t have to sit there so quietly, so happily. Chloe can throw a fit just as well as any toddler, but she doesn’t do it that often, because she doesn’t find many things to throw fits about, especially out in public.

For her, there are better things to do. She watches every person who walks by, trying to catch their eyes and get them to smile at her (she’s usually successful). She keeps an eye on the busboy because, for her, clearing tables is a spectator sport. She laughs at other kids and listens to the conversation and watches people eat. Chloe is almost never bored.

Apparently, neither was Christopher Nolan, an Irish author with severe cerebral palsy who wrote a lightly fictionalized account of his life called Under the Eye of the Clock . Nolan could not walk or speak, and he used a rod held in his mouth to type his poetry and memoirs. In one of the incidents he described in his autobiography, he spent an hour alone in his third-grade classroom, forgotten when the other students went to an assembly. Knowing he was stuck there for a while, Nolan went about finding something to do. First, he imagined himself as a famous Irish tenor. After that, he created his own version of Van Gogh’s self-portrait in his head. Finally, he thought of his sister and remembered every detail of a show she improvised for him, singing and dancing on the stairs in their house. When he heard the class returning, Nolan’s only lament was that his teacher would feel guilty for leaving him, thinking, “I must not appear sad, anyway I’m not.”

In the car, Chloe is laughing again, even though there aren’t any other vehicles around. I tilt the rearview mirror toward me, and I see that she’s grabbed a handful of her own hair. “Look, Jon,” I say, turning the mirror back toward him, “Chloe’s got her hair.”

“Good job, Chloe,” Jon says, and she laughs louder. We all know it’s something to celebrate, a major milestone, even if it’s not on any child-development chart. The fact that she can lean her head down and reach her arm up and close her fingers around a piece of hair and pull means that Chloe’s body is working better than it was a month ago. She finally yanks too hard, pulling out a handful. It must hurt, but for Chloe, who has suffered through gastric reflux, stomach surgery, and six weeks of daily shots to stop her seizures, this is nothing. Besides, being able to hurt herself is one more tiny piece of control, and every piece is a gift, not to be complained about or taken for granted.

I’m sleepy by the time we get home. It’s been a long drive at the end of a long day, but there are lots of things left to do. Chloe needs her dinner, which consists of a carefully measured blend of soy milk, oatmeal, vegetables, and flaxseed oil liquefied in a special blender and poured directly into her stomach through a feeding tube. Jon and I eat with her, and she watches our food move from our plates to our mouths, laughing at us as if we’re doing something really odd. She tries a small bite of potatoes from Jon’s plate, grimaces at the texture, then smiles proudly as she wrestles it down her throat. Jon offers to give her a bath, and while they’re in the bathroom, I fold the foam pads that I use for a special massage Chloe gets every evening. Halfway through this task, I hear Jon calling from the bathroom. He’s forgotten Chloe’s pajamas. Sighing, I put the foam aside and walk down the hall to Chloe’s room, where I have to search through her drawer to find the right pajamas for an autumn evening: not too warm, not too cool. I grab a diaper just in case he’s forgotten that, too, and open the bathroom door.

Chloe is lying on her back, kicking her legs in the shallow water. Jon is standing over her, a toothbrush in his mouth.

“What are you doing?” I ask.

He turns to the sink and spits. I’m already kneeling next to the tub, my hand on Chloe’s head.

“I’m brushing my teeth.”

“You need to keep one hand on her. She could roll over and drown.”

“Chill out, Mommy,” says Jon, wiping his mouth on a towel. “She knows not to roll over. And I’m right here. I’m not taking my eyes off her.”

“Remember what happened last week?” Last week, when Jon was bathing her, Chloe kicked up a wave and got a little water in her mouth. I heard her coughing and rushed to the bathroom in time to see Jon sitting her upright and patting her back. Jon was flustered, I was panicked, but Chloe thought the whole thing was hilarious.

“God,” says Jon, lowering himself onto the floor next to me and pouring shampoo into his hand. “Aren’t you ever going to forget about that? A little water never hurt anyone.”

I realize I’ve gone too far, so I retreat, closing the bathroom door behind me. I finish folding the pads, but I can’t relax. I keep analyzing the sounds from the bathroom: Why was that splash so loud? Which of them is doing all that coughing? Was that a toy or Chloe’s head hitting the floor? I go out to the back deck, where I can’t hear anything, can’t do anything, and immediately I feel better.

Admitting we are not in control, being grateful for what we have, learning to be content just sitting still: These sound like spiritual ambitions. “Let go and let God,” Christians say, while Buddhists claim that all suffering comes from attachment, our struggle to find happiness by controlling things and circumstances. After we found out about Chloe’s disability, Jon and I realized how little control we have over what happens to us. Like many people, we’re still trying to accept that, to stop thinking about what might have been or what could be, if we just work hard enough. Sometimes we turn to prayer or meditation, to sitting still with only our wayward minds and our sense of something greater for company. These things are very hard to do, which makes it almost irritating that our three-year-old has always been an expert at them.

I’m not going to start proclaiming the stereotype, though, telling everyone that people with cerebral palsy are happier than the rest of us. Living with cerebral palsy involves huge challenges that could make anyone frustrated or depressed. And people with cerebral palsy deal with the same everyday problems as the rest of us. I’m sure the cerebral palsy demographic has its share of unhappy people. But watching Chloe develop, I suspect she has had a unique opportunity: to learn, early in life, that she can find profound happiness just going along for the ride. As Chloe gets older, she’ll gain more skills and acquire more equipment, and hopefully, someday, she won’t have to depend on other people to control the details of her life. But I hope that she can continue to find strength in surrender.

As I open the back door, I can hear Chloe crying. I check the bathroom, and everything looks normal: the tub drained, the washcloth folded neatly over the faucet, her wet towel still lying on the floor. Apparently, the screaming is just Chloe’s usual bedtime meltdown. She loves being awake, and she thinks that giving up sleep is just a matter of fighting hard enough. Unfortunately for everyone, the one thing she desperately wants to control will always elude her. I can tell from the sound of her crying that she’s exhausted. In fifteen minutes, she’ll be fast asleep. I stick my head through the door and see Chloe flailing in her bed. Jon is standing over her, stroking her head and murmuring in her ear.

“Do you need me to take over?” I ask.

“No, thanks,” he answers without looking up. “We’ve got it all under control.”

I slip back out the door and close it behind me, smiling to myself. Jon is wrong. We have very little under control. But right now that’s okay with me.

Brain, Child (Summer 2008)

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