By Marie Myung-Ok Lee
On Saturdays I drive to another state to take J, my three-year-old, post-cancer, autistic son, to the Happy Trails Stables, a facility for hippotherapy for mentally and physically disabled children.
I found out about Happy Trails back in another life—before I had J. As a child, I’d made a promise to myself that I would always try to do some kind of volunteer work. When a friend with a child who has cerebral palsy mentioned the stable, I thought, Aha! The perfect volunteer job. I had shown quarter horses as a child, and my skills could help severely disabled children. Noble and yet secretly indulgent of my addiction to the smell of horse manure.
The idea simmered on the back burner for years, but I never got around to actually calling Happy Trails. Miscarriages, pregnancy, an on-again-off-again writing career, my father’s suicide, and a few other things got in the way—and now my son is one of those riding children whom I once envisioned with a mixture of pity and compassion. And I’m no brave horse-wrangler—I’m just a mom, planting my boot on the side rails, watching the parade of children go by.
Happy Trails is the Platonic ideal of a stable. You enter it via a winding drive that passes woods and rolling sedge fields. There is a barn, an arena, and an outdoor riding ring surrounded by a weathered whitewashed fence—it can’t get any more quaint. Happy Trails even has its own art gallery displaying oil-painted renditions of its bucolic splendor.
What is different from your average stable is a long wooden ramp leading up to what looks like a stage set up in the arena, so that children of varying abilities can mount their horses. Wheelchairs can be pushed up the ramp. The tack room has a neat row of bridles with the horses’ names—Kimmie, Paint, Thor, Gus—but also a row of pediatric helmets hanging next to thick web belts with handles, as well as an assortment of textured rubber balls and other tools used for physical therapy. On a table sits an issue of Equine magazine next to a splayed catalogue of “mobility tools” for the differently abled: foam blocks, chew-toys, full-body wheelchairs, and an assortment of braces—unsettling in their scope and variety—to buttress hypotonic (low muscle) children into a semblance of sitting or standing upright.
When J and I arrive, I put J’s helmet and belt on him. Part of J’s disability involves his extreme dislike of doing anything anyone wants him to do, and so the next phase involves me and his therapist dragging forty pounds of kicking, biting, and screaming J up the ramp and onto the back of his horse, Kimmie, who amazingly ignores the commotion.
The smallest children, like three-year-old J, do not use saddles but instead hang on to a metal steering wheel attached to what looks like a giant canvas luggage strap circling the horse’s middle. The children wear web belts around their middles so that the “side walkers”—an adult volunteer and the therapist—can hold the kid on the horse, while a third volunteer holds the horse’s lead.
Kimmie is a placid gelding the gray-white color of old underwear. In all my years of being a serious rider, I have never seen such unbeautiful horses as I have here. Swaybacked, knock-kneed, strange mixtures of breeds, like the stumpy pony who looks unmistakably part draft horse. These mounts have no wild oats to sow; they are all at least fifteen years old. Gus, the one who is so sway-backed that he looks like some kind of camel, is purportedly fifty years old, which would translate to about 130 years in human age.
They come to Happy Trails in a variety of ways: Most are donated or plucked from the dog food factory line to retire to a nice life of working a few hours a day and then spending the rest lazing in pasture. The horses must have an even, plodding gait and unflappable personalities. As a test, a trainer gets on their backs, screams, flails, falls off—does everything short of shooting a gun. The horses that remain unmoved are accepted.
I think J secretly loves riding, but he is big on what the therapists call “counter-control.” For example, during his Skinner-based therapy, when we reward him with edible treats, he often hands the treats back—after spitting on them—to show us he can’t be bought.
So no matter how much he really enjoys riding, the fact that we are making him do it has to be acknowledged first. As he tantrums up the ramp, J tries to pull off his helmet, kicks at me and the therapist, and reaches over and yanks the patient Kimmie’s mane. (Horses actually have no nerve endings in their hair’s roots, but J doesn’t need to know this). What the therapists have learned to do is to toss J on like a sack of potatoes and start running off the minute J’s little butt hits Kimmie’s back. J has no recourse but to hang on for dear life.
Kimmie trots off. J screams with rage, tiny hands clinging to the steering wheel. But there is a flash of happiness in his eyes. A moving roller coaster! He loves it, truly.
In the lingo of therapists, riding a horse challenges balance, bilateral movement, and cross-midline skills (e.g., moving your right arm to the left, which requires a surprisingly complex brain action), skills that the able-bodied take for granted. For children who have never walked unassisted, being atop a moving horse actually allows them to experience the rocking pelvis sensation of human walking.
J has motor delays, likely stemming from the trauma of his spinal cord cancer, and could use some of that cross-midlining. The therapists also assure us that hippotherapy will help him with his relationship skills, since many autistic children end up bonding with their mounts. And it has the further benefit of being fiscally therapeutic for Mommy and Daddy: we spend more than twenty thousand dollars a year out of pocket on his various therapies, but our state Medicaid, though collapsing under the weight of drastic budget cuts, shells out the ten dollars a week for this.
During our first sessions, I was so consumed with getting J successfully atop his horse, and then bursting with pride to see my little guy bouncing atop Kimmie—what a good seat! just like his mommy!—that I was oblivious to my surroundings, the other children, the other parents. But then the therapists started taking J for little trail rides around the farm, leaving me behind with nothing to do but watch the other kids going ’round and ’round the indoor ring.
My initial impression was that the whole enterprise was a Flannery O’Connor story accompanied by Diane Arbus photos. The bucolic setting, the misfit horses, the impossibly deformed and damaged children. Some kids, like J, scream. Others jibber-jabber. There is also a silent rider, who is microcephalic, adult in size but still able to wear those tiny pediatric helmets.
There’s the family whose daughter (seven? nine? twelve?) is in a full-body wheelchair, her limbs the texture of overcooked spaghetti. I always admire the aplomb with which the father or mother—they seemed to switch off—manages to get their daughter ensconced in the wheelchair, grab their Dunkin’ Donuts coffee out of the van’s cupholder, and wheel to the tack room. One day I saw that the mother had added a baby on her hip to the whole load, and I thought, Wow, that’s nice, at least they have a healthy daughter. Then when I came closer, I saw that the baby had floppy limbs encased in plastic braces, much like her sister’s.
There is also a father and son who have the session right after J’s, so as we finish up, we often see them unloading. The boy, about twelve and quite large, has some kind of mobility problem, but he doesn’t use a wheel-chair: His father hugs him around the armpits from behind and the two of them “walk.” They do this every week, stubbornly, lovingly, insistently. I can’t help wondering what will happen as the boy grows larger—he’s bordering on the obese—and the father weaker. This center will not hold.
Unlike my friends, who spent their pregnancies cupping their hands on their bellies and smiling knowingly, I was tormented during my pregnancy by visions of deformity. The very opacity of my skin over my womb only added to my anxiety. Anything could be growing in there, I thought.
As a child, my physician father tried to get me interested in medicine by bringing home medical texts from the office. I became fascinated with one, Gross Malformations of the Human Anatomy. I could spend hours poring over the pages, cataloging the endless ways things could go haywire in the process of a sixteen-celled blastocyst actually growing, dividing into muscles, bones, organs, skin.
Being at Happy Trails was not unlike seeing the strange wanderings of my mind somehow realized in front of my face. The visual trauma was different than being in the oncology ward, where every child has a chemo stent in his neck, or at J’s autism school, where every kid is staring off into space and making bizarre noises. Here on display is the full wild range of disability and damage: brain injury, malformed limbs, genetic deformities.
One day I spotted an older rider—she had some wrinkles along with obvious mental retardation—and I wondered what she was doing at Happy Trails. Then I saw a much older, much wrinklier couple—her parents—and realized that yes, she is someone’s child, and yes, as these children grow, their deformities will grow along with them. I can’t help being curious now when I see someone new at Happy Trails—what are these riders’ disabilities, and are they physical, mental, or both?
It didn’t take long to find out. Some of the parents look bored out of their skulls and seemed happy to converse with a scruffy Korean-American woman who looks twelve years old. (I am often mistaken for J’s babysitter.) They talked strangely freely of their children’s disabilities and confirmed my suspicions that many of the physically handicapped children have mental problems as well. And here I thought we were such singular victims of bad luck, a child with cancer and autism.
I hesitated over revealing too much in return. There’s a part of me that wants the world to know how much J has suffered—spinal cord tumor at eighteen months, endless painful surgeries, full-body casts and wheelchairs, and now the pain of autism—so the world will be “nice” to him. But at the same time I have a fierce faith that he will recover, and so I don’t want him to be burdened with the history of being the cancer kid, the autistic.
When the parents spoke of their children’s disabilities, I was happy to listen. But when confronted directly with their offspring and their shocking deformities, I had to consciously force myself to act “normal”—i.e., making eye contact but not staring too little or too much, because I know too well how I feel when this is done to us.
But after a few weeks of putting on this careful act, a strange thing happens: I find something in my brain softening and shifting and I start seeing so-and-so’s kid only as so-and-so’s kid. Not to sound too Jerry Lewis, but I start seeing the child and not the disability.
It is the brain’s instinct to normalize, basically. Good and bad things alike. My husband said that his high after being granted tenure at a great university lasted exactly three hours, and then it wasn’t exciting anymore.
After hanging around Happy Trails long enough, the families become familiar as well. Coming from three different states, they are mostly upper-middle-class and educated, typical of people who have the time and skills to seek out such esoteric therapies, basically the same kind of folks I deal with every day in our college town. We talk about meaningless things, the weather—which is always changing, this being New England—as well as about things that matter. How cuts in spending are affecting special education. About new medical procedures that our children have to undergo. Occasionally, of progress.
And it starts feeling good in its own odd way, this mundanity.
“You got enough room, Al?” one of the fathers calls as he moves his car, knowing that Al needs extra elbow room to haul out his enormous son. This casual consideration—not the condescending, you-poor-people, special-needsy politeness but just nice everyday politeness—is rewarding to us all. As Al parks and then struggles with uncorking his gigantic son from the car and then does their plodding tandem walk, a scene that would certainly draw popeyed stares anywhere else, the rest of us chitchat. For us, it’s just another Saturday at Happy Trails.
I used to wonder how they convinced the people in Gross Malformations to submit themselves as models. The photos are uniformly stark, wholly unflattering black-and-whites. The subjects, when their faces are shown, stare off without a trace of emotion—no happiness, rage, shame, anger, or pride. They wear no clothes, no identifying markers except for their deformities. What would be in it for them? I wondered. I doubted they would go home and tell their friends, Hey! I’m appearing in this book called Gross Malformations!
But I remember when I started imagining the people—webbed hands, gaping cleft palate, an unclosed abdominal cavity through which small intestines poke out like polish sausage—back in their lives, back at home with their “gross” malformations. There was probably an altruistic sense that they were helping the cause of medicine. But maybe also a sense of belonging—there’s no reason to be embarrassed over being naked and showing off one’s deformity when everyone else was naked and showing off, too. The more the merrier.
And we, too, welcome any and all to our select society. With our cups of coffee and cars with the handicapped placards hanging off the rearview mirrors instead of graduation tassels, there we stand with our jagged, battered hearts in the middle of life, our lives, lives about which the Buddhist in me says simply: They are what they are. And, just the way I imagined the models for the Gross Malformations book did, after our sessions are over, we pack up our kids—wheelchairs, crutches, braces, damaged brains—and head back into the world with all its grimly fixed judgments, all the while contemplating, What is normal, exactly?
Author’s Note: J now seems to prefer bulldozers to horses, although he occasionally speaks fondly of Kimmie. We have come to the conclusion that autism is a biological disorder of the immune system triggered by environmental factors and thus, his cancer and autism might not be a case of lightning striking twice, but may actually be intimately related, and we are pursuing treatments in this direction with so far small, but significant, improvements.
Marie Myung-Ok Lee is writing a novel about and OB and the future of medicine (forthcoming in 2015 from Simon & Schuster). Her essays have appeared in The New York Times, The Nation, Slate, Salon, and The Atlantic. She teaches creative writing at Columbia. You can find her on Facebook.
Brain, Child (Winter 2006)