The alarm goes off at 4:30 a.m. Groggy, I turn on the lamp on my night stand and try to sit up. I put my right hand on the wall next to my bed to steady myself, and push my left into the bed. Right away, my abs and back seize up and my legs spasm and kick out straight, forcing me back down onto the bed. Clearly my body thinks it is too early to get up, but I don’t have time to argue with it. I have to get physical therapy out of the way so I can be on time for my medieval history class.
After I sit up, I place my hands under my right knee and clasp them together as I bring my knee up and closer to my chest. I reach out to my right foot and cross its heel over my left thigh so that I can plant my heel on the bed. I hug my right leg against my torso and chest and feel a stretch in my lower back and butt. I repeat this on my other side and then proceed to stretch each ankle.
Paralysis requires maintenance.
I then hop toward the foot of my bed, where my commode chair sits. I set both feet on the footrests as best I can, grab the armrest on the far side of the chair with my left hand, and, using my right hand to drive down into my bed, lift myself onto the commode wheelchair, and wheel to the bathroom.
I emerge at 5:35 a.m. I transfer now into a wheelchair whose dimensions are friendly toward my Functional Electrical Stimulation (F.E.S.) cycle — something like a gym exercise bike, without the seat. I pull some milk out of the mini-fridge and pour it over a bowl of cereal. I eat while checking and answering email. At 6:30 it’s time to start cycling. I put two small rectangular electrodes on my left shin muscles, and then two on my right, connect them to the cycle, then strap in my legs and feet. Then two more electrodes then two more, and so on, until most of my lower body is tapped and wired. After I turn on the tablet that’s attached to the cycle, I choose from one of several preset programs to start my workout. Within a couple of minutes, electrical shocks are pulsing into my legs, causing them to contract into pedaling. Imagine pedaling a bicycle uphill for an hour; this is my wo
Still, I’m groggy. I spend the hour feeling various muscles contract, occasionally nodding off and jerking back awake, and thinking about paper topics for my three history classes, a Latin translation I need ready by the next day and an email I need to send an adviser, and wondering if I should keep my laptop next to my cycle for the next workout so I can pedal and binge watch “30 Rock.”
O.K., almost there.
At 8 I take my electrodes off, bag them and transfer back into my bathroom wheelchair and wheel to my shower. By 9, I am mostly dressed. I transfer to a third wheelchair, a power-assist whose batteries had been charging overnight. I have 30 minutes to blow-dry my hair, make sure my bag is packed, apply enough makeup to cover my acne, and put on my sneakers and jacket, before heading to the shuttle that will take me to my college’s main campus.
By 9:45, I’m outside my Making the Middle Ages class. I wave slowly at a classmate across the hall.
“Hey, how are you?” she asks, “You look tired.”
“No, that’s just my face,” I say, and laugh a little. If you’ve read this far, you’ll understand why I didn’t go into more detail just then. My mornings are complicated.
I have never felt comfortable discussing my physical therapy regimen with other students, particularly if I do not know them well. I learned in high school that if I discussed my disability, physical therapy or any inevitable difficulties that came with the mobility-impaired life, that no one wanted to continue the conversation.
My high school track teammates who visited me in the hospital after my spinal cord injury met my stories with awkward silence when I returned to finish my senior year. Some of the captains discouraged me from speaking with new team members. I was a reminder of the van we were in that rolled down a highway median (I was injured the most seriously). They felt uncomfortable looking at me. And when I got into Harvard, they insinuated that my acceptance was a result of affirmative action. More than one classmate told me, in words that varied only slightly that I was lucky to have a “perfect personal essay topic.” (I attended Stuyvesant in New York City, where students have an unhealthy obsession with getting into elite colleges and any life obstacle was considered an edge for getting into an Ivy League school.) Halfway through senior year, my friends became nothing more than signatures on the large get well card they gave me the year before.
My high school teammates’ discomfort wormed its way into how I talked about my disability during my four years of college. I wanted to keep my college friends, and silence on certain topics seemed the best option. Similarly, I wanted my professors to know that I took my work seriously, and so I would go to class even when my blood pressure was low enough that I was close to fainting, or when my body temperature had dropped to the point where I could not stop visibly shivering in class. When my disability made it difficult to work, it was the last thing I would use to explain an absence from class.
I was concerned that my situation would immediately fall into a stereotyped narrative — either disability as tragedy or disability as my personal hurdle I sought to overcome as I desperately worked to rejoin the able-bodied. I feared that my disability could not exist as it was.
To avoid labels, I played down any improvements I made in physical therapy, choosing to tell my friends about how my arms were jacked instead of how my hip flexors were finally showing trace movement. There was another angle: If I mentioned improvement, it implied that I hated my disabled body and wished for what the able-bodied perceive as normal. If I mentioned that I exercised my legs to avoid atrophy so that I may be able to benefit if there was ever a cure for paralysis, I worried over betraying the disability rights cause.
We, the disabled, encourage one another to demand that society accept us for who we are, and not change our routines to accommodate how the general public feels we should look. But I want to stay healthy, and I want to keep my body ready for the future. I believe strongly that everything should have been made accessible yesterday, but I also would choose an abled version of myself over my current self any day — it’s easier and more time-efficient to manage. Does spending so much time maintaining my body make me an inspiration, or a disability rights failure? Can I choose a lifestyle that won’t be judged?
Perhaps not. And so I’ve taken on a small but meaningful act of resistance, by changing the way I talk about the life I now lead. I’ve sought to explain my regimen to others as health maintenance, which is an accurate, although thoroughly unsexy, description. My F.E.S. cycle workouts and standing frame (a machine that is exactly what it sounds like) sessions keep my muscles and bone density intact, my circulation going, and my health at a level such that I am less likely to require hospitalization.
I don’t want to come off as angry, hopeless or inspirational, because my life may end up defined by one of those adjectives if I provide the slightest description of my day. But let me, just for now, take control of my story and tell you that I have a disability, and it takes time and effort to both maintain my health and live my life.