The first nine years of my life, I moved like a charged particle: buzzing with energy, always in motion. Then the pain came. Within six months, the wildfire of juvenile rheumatoid arthritis had spread to nearly every joint in my body. The pain was horrendous. Its unceasing severity meant that within five years many of my joints were catastrophically, permanently damaged.
By ninth grade, my school day was exhausting. Most of my energy was spent dragging myself from point A to point B on crutches. The effort I put into short bursts of locomotion ground me down to a nub.
The simplest, most sensible solution would have been for me to use a wheelchair for mobility. But at that point in my life, it was unimaginable. Wheelchairs were only acceptable for the profoundly disabled and the elderly. If you drooled, wore diapers and spent your day making potholders, enjoy your seat on wheels. But if you were capable of anything more, you better get your ass up and move.
That same year, my ankles became so painful I had no choice but to have both of them surgically fused. My rehab was a long, painful slog to regain the ability to walk. It left me no choice but to return to school in a wheelchair.
My dad took me to school my first day back. The school administration suggested we come in through the loading dock, then pass through the boiler room. I was cargo to be unloaded, like a case of industrial-strength rat poison.
Most of my classmates had no idea I was returning to school at all, and I’d told only a couple of close friends that I’d be using a wheelchair until I regained the ability to walk. I could see the shocked looks of students and teachers as my dad and I entered the corridor.
I’d attracted plenty of stares and snickers before the surgeries, with my leg brace and crutches. But in the chair, I had reached a whole new nadir of gimpdom. Funny how sticking your ass in a 25-pound metal, vinyl and rubber contraption can bring about a new world order.
By the start of sophomore year, I was no longer using the chair. But six years of severe arthritis had transformed my gait from one of long, speedy strides to the side-to-side, slow waddle of a penguin. Three minutes was barely enough time for me to change classes.
To accommodate me, all of my teachers agreed to let me leave class a few minutes early. But that solved only one of two problems. The first was my slowness in getting from here to there. The second problem was how to get from a seated to a standing position.
My pain and limited mobility made getting up from chairs or desks really tough. I often had to rock back and forth to get enough momentum to stand. I strained hard, holding my breath in the process. For a few seconds, my brain was deprived of oxygen to the point where everything around me got fuzzy and faint, making me feel like a spray paint huffer.
The rest of my high school years included multiple surgeries, rehabs, temporary parent-approved wheelchair use and striving to get back on my feet. It was an ongoing cycle of pain, shame and struggle to become mobile enough to go to college.
Planting My Butt in That Chair
I bought into my parents’ belief that using a wheelchair equated with tragedy and failure. It was all I knew. And when they moved me into my college dorm room during freshman week, I was a teary-eyed, nervous wreck. I was uncertain how much walking I would have to do each day.
What if the walking was simply too much? What if I had a flare or sudden pain that kept me off my feet? What if I missed too many classes and flunked out? My anxiety ratcheted up so much that I was vomiting each morning and crying every day. Finally, my parents woke up to the reality of my situation.
After freshman year winter break, I returned to school with a very basic Everest & Jennings sling-seat power wheelchair. My parents made it clear that I must walk whenever possible. They felt certain that if I used a chair even part of the time, I would grow lazy and stop walking altogether.
I had to admit that the chair’s very presence eased my mind. I was comfortable using it in my dorm. I lived in my university’s gimp ghetto: the only floor of the only dorm accessible to girls with disabilities. I was among friends.
Still, I had to mentally sort out for myself exactly what relationship I would have with the chair. But the rules I developed for when and where to use the wheelchair were not crafted strictly by common sense. I was fighting a very personal inner battle about how I saw myself and how I wanted others to see me. There was something about planting my butt in that chair that seemed to lower my status as a potential friend and more importantly, girlfriend. The bottom line was this: wheelchairs were boner kryptonite.
If I had a major spinal cord injury, I’d have to use a chair for mobility — there’d be no room for debate. But I inhabited a realm betwixt those who walked all the time and those who never did. There was no “how-to” guide for someone like me, or at least I’d never seen a book titled Sometimes Your Ass Walks, Other Times it Rolls: A Guide to the Wheelchair Netherworld.
It was all pretty ridiculous, since even when I was up and walking, I would never be mistaken for a nondisabled person. Standing or seated, I was still a gimp. But to a lot of people, a wheelchair is a prison, a sign of tragedy, a symbol of defeat. The chair is a mechanism of freedom and empowerment that can make the difference between getting an education or not, holding a job or sitting at home, exploring hillside towns in Spain or never traveling beyond one’s front stoop.
It Isn’t Always All-or-Nothing
Part of me still bought in to the idea that to use a wheelchair was a sign of failure. Perhaps I simply wasn’t trying hard enough, wasn’t soldiering through the pain like I should. I’m ashamed to admit it, but on days I did take the chair to class, I hid it. I would arrive early, find an adjacent empty classroom, park it there, then walk over to my class. That way, I could stride into my classroom as if nothing was wrong. (Or, as if nothing was wrong with me.)
Outside of class, I struggled to meet guys who could look past the chair and see me. I had lots of male buddies, but rarely did things progress beyond friendship. Then I met my husband. We fell hard for each other. Before I got too far in, I secretly gave him a test to pass. The first time we went out together, I held his hand, making it clear to passers-by that the chick in the chair was dating the guy who walked. He gladly took my hand, even kissed me, and never flinched. He passed with flying colors, and we got married two years later.
Now that I’m over 50 and have had more than two dozen orthopedic surgeries, I use my chair from dusk ‘til dawn. The only time I’m out of it is to walk short distances, several times a day. If I don’t, I get achy, stiff and fatigued. This means that my co-workers sometimes see me up on my feet.
People are especially puzzled by someone who mostly uses a wheelchair yet sometimes walks. They think it should be an all-or-nothing thing. When you’re not in the chair, you’re bound to get smiles and comments like: “How nice, you’re getting better!” My typical response is to smile and nod, while thinking: “Screw you, asshole! There ain’t no ‘getting better’ for me. New, healthy joints don’t just magically appear like leprechaun gold.”
But I refrain from such comments. I’m comfortable now with who I am: a virtually full-time wheeler. When I can’t get into a restaurant or book an Uber ride, I don’t find fault with myself. I place the blame squarely where it belongs — on a society that continues to devalue disabled folks by designing only for the temporarily nondisabled.
Temporarily, did you ask? Yes, because karma is a bitch.