By Sarah Coglianese
As a new mom, I experienced moments of utter bliss and moments of pure panic. I imagine that’s not unlike the experience of most first-time parents. Of course it’s not exactly the same for everyone, but it’s safe to say the adjustment period can be rife with anxiety for many of us. Among the concerns I recall having after Scarlett was born: Why was breastfeeding so much harder than I thought it would be? Why was the baby’s poop green? Why did she detest every nanosecond spent in her car seat? And why did I decide to start sleep training the night my sister-in-law and her family were staying with us, seven people in one small apartment? I guess that last one is less of an anxiety and more an example of poor decision-making.
But then there were the more obscure fears: What if the ceiling fell on her while she was sleeping? What if she was stolen out of her crib? What if she somehow got stuck in the refrigerator? Unlikely to happen though they were, these were the images that kept me up at night.
As my daughter grew, my anxieties abated. She was thriving, and developing quite a personality. A good eater, a terrible napper, alternately sweet and feisty. We got the hang of breastfeeding and took naps together in my big bed. When she was 17 months old, I quit my job and we spent days exploring our city, going to music classes, walking in the park, splashing at swimming lessons.
Then one day, I was pushing her stroller down the street when suddenly I stumbled, the stroller pitched forward, and we ended up on the ground. I scrambled to stand, to right the stroller, and then I just stood there looking down at my flip-flopped feet, one bleeding ankle. Scarlett was fine, not even crying, but my heart was racing. I pushed the stroller back to my car and told myself it was time to stop wearing flip-flops, but something in me knew that wasn’t the real problem. It wasn’t the first time I’d fallen. It wasn’t even the second or the third time. Though I’d been trying to ignore them, the falls had been happening more frequently, especially when I tried to go running. What was once my favorite activity was now nothing more than a three-minute exercise in frustration. My feet just would not lift.
Ironically, with something to actually be worried about, I stayed calm. I decided I wasn’t drinking enough water, that I was indeed wearing the wrong shoes, that I wasn’t getting enough sleep. But when Scarlett was 22 months old, I saw a neurologist who suspected Amyotrophic Lateral Sclerosis (ALS), the muscle-wasting disease that carries with it a prognosis that no one wants to hear. I’d been worried about the ceiling falling on my sleeping child. Now the sky was falling on our life together. The diagnosis was confirmed, making my new probable lifespan two to five years. No treatments, no cure. I held my baby in disbelief. I’d had such a vivid imagination when it came to what could go wrong. But a terminal illness that would slowly paralyze me until even my lungs stopped working?
That one had not occurred to me.
Despite my ALS, our lives continued. There was no other choice. I began walking with a cane, and then wearing ankle braces. Scarlett started preschool. Eventually I acquired a bright purple walker, which made me feel like a little old lady. Sure enough, when I went to visit my grandma in the senior living facility to which she had recently relocated, a woman in the elevator took one look at me and one look at my walker and said, “You don’t live here, do you?” I was 34 years old at the time, but I knew it wasn’t a foolish question. Walkers like mine were everywhere, as I made my way to my grandmother’s apartment.
Were these my people now? Aging bodies slowing down. Death no longer a future glimmer, but a reality too hard to ignore. And was my grandmother, who had no trouble walking, actually in better shape than I was? Well, yes.
I was spinning, untethered from the person I felt I had once been. A marathon runner, a devoted mom and wife, an independent woman who had never particularly liked asking for help. I was consumed by my sadness and confusion, by my anxieties about what was to come.
And then I discovered other people who were like me. Young moms and dads, people in their 20s who never had a chance to start a family, all of them living with ALS. I found them by writing about my experience, by joining a group on Facebook, and by becoming heavily involved with several nonprofit organizations that raise money for ALS research. My people, it turned out, were not the ones in the senior home who had lived long lives and had much to show for it. My people were the ones who were fighting for their lives, fighting for more time with their children, fighting a disease that we’d been told would certainly kill us–and soon.
Scarlett is five years old now. She just started kindergarten. I haven’t run in a long time, and I can’t even stand up anymore. I spend my days in a wheelchair, my hands and arms are growing so weak that I often need help eating, and a machine helps me breathe for a few hours each day. But I am still writing, and I’m still working to raise awareness and money to end this disease.
Each new phase of my experience brings fresh anxiety, but it is important to me to keep my daughter’s life as normalized as possible, to spend time with her—just the two of us—even if a caregiver is hovering nearby or waiting in the car.
ALS is relentless, and it will take my breathing muscles away from me. I don’t know when, and the worrier in me wonders if I’ll be sitting across a restaurant table from my daughter, watching her take down two slices of pizza, when my chest gets tight and an anti-anxiety pill isn’t enough.
For now, I take breaths as deep as they come, breaths that would horrify my former yoga instructor, and tell myself it’s okay. I still have time. The sky has not fallen. No one has gotten stuck in the refrigerator. And ALS, as scary as it is, is what we’re living with. The past five years of being a mom have taught me that I can’t let the fears, real or imagined, take over my life. I can be safe, I can be prepared. But I can’t give up.
Sarah Coglianese is a writer and blogger whose work has been published in The New York Times, Redbook Magazine, and CNN.com, among others. Sarah was diagnosed with ALS in 2012 at age 33, and started speed4sarah.com to raise awareness of the disease. She lives in San Francisco with her husband, their six-year-old daughter, and a puppy.