Know when to walk away, know when to roll

Grappling with my need for accessibility devices

This week, I was invited to share a little about my life with Long COVID over at Public Health Action Network. The result was an essay titled Fallout, a reference to the eerie feeling I have on the rare occasion I’m able to leave home: like I’ve tumbled, disoriented, out of a fallout shelter. In the essay, I shared that after walking 200 feet to the neighborhood market in early January, I triggered a miserable week of migraines and fatigue. For days after my oh-so-brief outing, I lay in bed with an eye mask on, doctors on speed dial and medications on rotation, unable to work.

Since last summer, I’ve described myself as homebound because I’ve been unable to leave my apartment without triggering symptoms this way. But over the last month, I’ve begun to ask myself: is it accurate to say I can’t leave home at all? Or would it be more accurate to say that I can’t leave home walking? After all, I do now have days where I sit up for several hours, working on this newsletter. Does that mean it would technically be possible for me to sit in a chair and go to the store? In other words, do I need to start thinking about getting a mobility aid, like a wheelchair?

This isn’t the first time the idea of a wheelchair has occurred to me. Years ago, I read an essay, I believe it was in the NYTimes opinion section, about a young mom with EDS, the same connective tissue disorder I have (and had prior to Long COVID). At the time, having kids was something I was ambivalent about; I liked kids a lot, but I feared that my disability, then somewhat disruptive but quite manageable, would make caring for them difficult. People always spoke of how tiring kids were, and I found the most basic, day-to-day activities tiring.

The woman in the essay discussed becoming an ambulatory wheelchair user, and how it had made her a better mom. She used the example of being able to take her kids to the zoo. The piece resonated with me so much; I was finally able to envision myself parenting in a scenario that would otherwise have been too exhausting for my body. While I didn’t yet need a wheelchair for day-to-day life, I realized that a wheelchair might one day help me with activities that required more mobility, and enable me to be more present and energetic for longer periods of time.

The zoo had particular resonance with me; it’s there that I realized I might be disabled in the first place. My mother is a lifelong zoo superfan. She’s a member of the Pittsburgh Zoo, and whenever my brother and I are home, she likes to take us, no matter how old we grow. I’ve visited so many times that I know the layout by heart, the tigers up front, circling back to the sea lions at the end.

Sometime in the last decade, my mom and I went on one of our traditional zoo trips, and after several hours, I came up hard against the limits of what my body could do in a day. By the time we returned to the car, I was exhausted. I couldn’t wait to get home and nap. My mother turned to me and brightly told me we were off to the Frick, a local art museum. “Mom,” I said, trying to let her down gently, “I’m way too tired for that.” She looked nonplussed, then laughed. “Oh, don’t be silly,” she handwaved my comments away, “I’m 60-something years old, and I’m fine. You’re young!”

I don’t tell this story to villainize my mom; I wasn’t mad at her then, and I’m not now. For the first time, her comments caused me to really think about my fatigue, and I’m glad she made them. “Wait a minute,” I thought to myself, “my mom is 60-something years old, and she is fine. So, what is going on with me?” After a lifetime of feeling tired, something finally clicked for me. I wasn’t normal tired. I was too tired.

We did go to the museum that day, but, at my urging, we sat outside at the cafe drinking tea and eating cakes for a majority of the visit. And from there, I started my long journey to learning about invisible disability.

Still, it would be years before the words “ambulatory wheelchair user” pervaded my consciousness, and even longer before I began to think seriously about mobility aids as tools I might someday use.

Stigma, both internal and external, has been a major barrier to considering wheelchair use. Since my condition worsened in June of 2024, I’ve defaulted to the assumption that I will “heal”, that I will get better and that the current severity of my Long COVID will subside. Of course, there are no such guarantees. But because of stigma, accepting and working with mobility limitations can be perceived as “giving up” or refusing to fight. Long COVID and ME patients are continually encouraged by doctors to push beyond their physical limitations, even though studies don’t support that this “heals” Long COVID patients, and in fact many studies support that physically pushing people with ME harms and worsens them.

It may be that clinging to my belief that “someday” I’ll be able to leave home without a wheelchair is robbing me of my “todays” - days when I might be able to leave home with one.

Unpacking my own internalized ableism is one thing; I also have to contend with the rest of the world, and ambulatory wheelchair users are one thing it does not like nor understand.

Recently, a video went viral of a group of “cheaters” gaming the system; it was a video of elderly people in wheelchairs who were allowed to board an airplane first. When their group was called, they got up from their wheelchairs and boarded the plane. In the rancid comments of the app-formerly-known-as-twitter, people railed against the clearly mobility-impaired elderly folks for “lying” and “cutting the line”. Of course, in reality, these people likely have difficulty standing for more than a few minutes, so would not be able to wait in a long line, and doubtless would be unable to traverse a gigantic airport. I know I could not. But the cruel comments sent shivers down my spine.

Though I have no immediate plans to travel, getting in and out of the wheelchair I know I’ll have to use if I ever do fly again- and the nasty looks I’d be sure to receive- is one of the first things I think about when I consider the challenges that would come along with navigating the airport.

I have already had one experience using a wheelchair as a Long COVID patient, and it went poorly. I had a neurologist appointment in a large hospital. A friend was supposed to accompany me, but she couldn’t make it last minute. I was nervous to ask about the wheelchair, so she called ahead and reassured me: someone would meet me at the front with one. I got out of the Uber: no wheelchair. Okay. I walked into the building, checking my heart rate as I did so. It was above 120 and the app I use to help keep me from crashing was accumulating “pace points” quickly. Anxiously, I waited in the line. A minute ticked by, another minute, and all the time I felt sicker.

Finally, the front of the line. “Hello,” I said shakily, my eyes darting around, “my friend called ahead, I need a wheelchair-”

“What friend?” the front desk lady snapped aggressively, “YOU need a wheelchair?” she questioned me, looking me up and down. The implication was clear.

“Yes, my friend called ahead and she said you would have them,” I offered, stumbling over my words.

“Where’s your friend,” asked the receptionist, for some reason fixated on my friend. “We are out of wheelchairs,” she told me matter-of-factly, as another staffer behind her, who had been listening, pulled a wheelchair out of a closet for me.

“Uh, well I think-” I pointed at the wheelchair. This seemed to upset her.

“You’re telling me YOU can’t walk downstairs?” she questioned me.

“I have a heart condition!” I finally blurted out, deciding to forgo the dreaded term “Long COVID” in favor of something more recognizable. These seemed to be the magic words. She shrugged, waving the other staffer on. I sat in the wheelchair, my eyes welling with tears. For a minute it seemed that I and the staffer, the nice one who had grabbed the chair for me, would spend the entire ride- and it was quite long, in fact- in silence. But then I decided to try and make the best of things.

“How is your day?” I asked her. We began chatting. I told her I was visiting a neurologist, and excited to see the doctor, as the wait had been long. She responded that the waits had been long “ever since the pandemic.” An opening! I shared that my symptoms had come from my (recent) COVID infection, including my migraines. She seemed curious.

“Is that why…?” she motioned to the chair.

“Not exactly. I’m not in the chair just because of the migraines. I also have other symptoms because of COVID”. I took out my heart monitor app and showed her what my heart rate had been doing while I stood in the line, arguing with the woman.

“Oh my gosh!” the staffer exclaimed. “If you hadn’t gotten this chair you would’ve passed out.” She paused for a moment, reflecting. When she spoke again, she seemed to be firmly on my side. “You know, that’s why people should just mind their business.”

There are other barriers to considering a wheelchair. First and foremost, the cost. I doubt insurance would cover one for Long COVID; insurance barely knows what Long COVID is yet. Then there’s the fact that I don’t know how to use one yet, nor is my old city building a model of accessibility. But the first barrier- the fact that I could not see myself as someone who “should” use a wheelchair- has come down.

Recently, I’ve finally begun using another accessibility tool: audiobooks.

I’m a lifelong reader. In 2020 I set a goal of reading 52 books and beat it. Other years, I’ve read more in the neighborhood of 25-35. I like classics, I won’t list the type of thing, but you know what I mean. I’m a literary snob! And last year, as I began having migraines more days than I did not, I just plain refused to start listening to audiobooks.

“It’s not,” I sniffed, “the same.”

And so in 2024, instead of reading 50, or 35, or 25 books, I read 16. Which is fine! But I also spent countless hours lying in bed, staring at the ceiling, doing nothing, because I was stubborn. Finally, about two weeks ago, I downloaded four of the books that have been sitting on my side table for months on end. Notes from Underground by Dostoevsky, Brideshead Revisited by Evelyn Waugh, The Temple of My Familiar by Alice Walker, and a book about the 1918 flu, Pale Rider by Laura Spinney. I’ve finished two of them already. And I feel very silly that I didn’t do it sooner.

I never thought of myself as ableist prior to 2024, when I became bedbound, or 2023, when I contracted COVID, or 2019, when the pandemic began, or in the 2010s, when I realized I was disabled. But like everyone, I was raised in an ableist society, and like everyone, I’m still unpacking what that means.

For now, I’m learning to love listening to Jeremy Irons, who will always be the voice of Scar from The Lion King to me, read Brideshead Revisited. And I’m learning it’s much better than never visiting Brideshead at all.