My husband lifted me into the wheelchair and locked the brakes. It was a shoddy one that the hotel kept for emergencies, roughened at the edges with dusty rubber wheels. But on New Year’s day in 2016, I wanted to feel the sun.
“Don’t worry, we’ll take turns pushing you,” he said matter-of-factly, referring to his family: outdoorsy, athletic Canadians who had big hearts and endless energy to walk, hike, and run. “It will be okay.”
But it wasn’t. The pain in my left hip had now begun to shoot down my legs. As he pushed me on the walkway towards the entrance of Disneyland, I grit my teeth to keep from swearing. I’d dreamed of this moment as a child and here I was, an adult woman, being pushed in a wheelchair to the amusement park I’d always wanted to visit, writhing in agony For the first time, I felt an unfamiliar anger at my own body, as if it had cheated me, let me down.
“Can you walk a little?” the Disney attendant asked curiously as we approached the gates of our first ride, and my husband nodded. Behind me there were many others in wheelchairs, waiting for their turn to ride down the Matterhorn. Girls with their feet in thick yellowing leg casts, older women, and men, hunched over bags, and purses, eyeing me suspiciously. I felt as if I were an imposter at the disability entrance. I heaved myself up from my seat onto the bobsled and looked away as we tumbled into the darkness.
I felt as if I were an imposter at the disability entrance… I didn’t know then that I had AS.
I didn’t know then that I had AS. I could walk but stumbled frequently. Flares—episodes of acute pain—happened all of a sudden. It would take a year of visiting doctors and therapists to identify the disease. Even then, I have Ankylosing Spondylitis (AS) doesn’t cut it. The disease chips away at my joints slowly, sometimes inflicting an unimaginable pain, and other times, disappearing for months. I never know when it will return. Worse, research has found that among rheumatological diseases, it takes the longest to diagnose AS. There is no single blood test, no indicative symptom, and no definite sign to tell that AS has crept up on you.
Weeks after I returned from Disneyland in early 2016, I limped into a doctor’s office in Columbia Heights. I hoped for a diagnosis. He examined my movement, ordered x-rays, and asked me about my medical history. But he conceded. He couldn’t tell what the problem was. The exams were normal. Although I couldn’t walk, the X-Rays showed nothing. “It could be Bursitis,” he said, and offered to inject me with a corticosteroid to ease the pain. I took it. I’d tired of searching for answers. All I knew was that a lifetime of feigning good health was coming undone.
Coping with a disabling disease requires a constant re-education. I’d grown up watching my grandfather struggle to climb stairs in his ancestral home in Kerala, a state on the coast of India. He’d limp up each step, holding on to the bannister, slowly heaving himself onto the long, joined bed that we all slept on. He had a type of disease that degenerated his hip joint, but I’d never seen him in a wheelchair. My mother struggled too, often taking the car to go the smallest distance, once collapsing on the floor of a mall in Kuala Lumpur with swollen ankles while we were on holiday abroad. Arthritis came with debilitating pain (I figured this much), but I never connected their experiences with disability. I found their stubborn refusal to seek assistance as a courageous, and combative approach to dealing with their bodies. Denying the presence of illness seemed a great way to focus on your inner strength.
It was a strategy I soon adopted myself as my own condition progressed. I’d internalized self-doubt to the extent I developed a disdain for my health. It didn’t prove an easier route to wellbeing.
I’d internalized self-doubt to the extent I developed a disdain for my health. It didn’t prove an easier route to wellbeing.
After the painful attack in Disneyland, I lost the capacity to walk over a mile without limping. I had no answers. Was I disabled? Was I able-bodied? I didn’t know anymore. But my home in Virginia became filled with pain sprays, orthopedic seating, and backrests. These additions are not substantial to visitors, but they were to me. It was my way of telling my body: “I hear you. I’m with you.”
For far too long, I’d been ashamed that I couldn’t do the things I used to do anymore—bike, walk, run—and kept hoping that my painful infirmities were just part of a nightmare that I’d wake up from. But soon after that day at Disneyland, I realized that being in denial about my condition wasn’t helping me cope. “It’s real whether you believe it or not,” a doctor told me, holding up a stack of tests I’d done over the year. “The sooner you accept it, the sooner you can make some changes.”
The trip to Disneyland was the beginning of an end. Since then, I started to make small changes, recognizing my limitations one by one. If the pain became hard to bear when I travel, I promptly accepted assistance at the airport. I politely declined invitations to the hikes or aerobics classes I could no longer comfortably do. I took up music and physical therapy. When I no longer tried to make sense of why I felt caught in-between my past able-bodied life and my new life with AS, I felt free.
Now and then, I pull up hundreds of photos I’d saved over the years to remind me of change: photos of my husband and I whitewater rafting in Trishuli river in Nepal, leaping off rocks in Del Mar, California, exploring ruins in Hampi, India. I know I can no longer relive these memories. But I’ve come to accept that new memories will possibly look different.
Before we left for a trip to Boston last April, my husband walked over to the airline counter in Dulles and asked for a wheelchair. I had a sudden flare and a blinding pain shook my joints. The airline staff looked at me suspiciously. Everything about me seemed normal. I wore a long black jacket, boots, and stood fiddling with my mobile phone. I didn’t look disabled. No one couldn’t tell that I couldn’t walk.
I realized that being in denial about my condition wasn’t helping me cope. “It’s real whether you believe it or not,” a doctor told me.
“My wife has a form of arthritis,” my husband explained. “She needs a wheelchair.”
Minutes later, an airline staff member stood in front of me, confused. “You need a wheelchair?”
I could sense her disbelief. But this time, I simply nodded and sank into the familiar comfort of the airport staxi and plonked my feet up on the foot rest. I decided to take one step at a time.
Even if it meant that I’d have to do that while on wheels.