Walking. It’s a sensitive topic among the wheelchair-using. As we sit and worry about peeing ourselves, think about a lack of representation at all levels of society, and believe that no one will find us desirable ever again, all we hear about is walking. It’s somehow the one aspect of physical disability that popular culture understands. I guess it’s not surprising given the gulf between us. Given the extent of the segregation. As a wheelchair user, I feel incredibly awkward when I see another disabled person out in public. I don’t know what to do. It happens so rarely I feel startled. Should I smile? Is this what it’s like for the shoppers at Trader Joe’s whenever I roll through? Somehow we’re all hidden. Maybe there’s a colony somewhere in America. Where all the doorways are wide enough. Where the different people go to hide from all the weird questions and the awkward smiles. Unfortunately, I haven’t been invited yet.
I have an incomplete injury. I am classified B in the ASIA impairment scale. This a scale that grades you from A to D, and you want to fail. As a B I am the rarest type. I’ve been called a unicorn by doctors. I also have a lower motor injury: I severed just the “tail” of my spine where a big bundle of nerves leaves the spinal cord column. As a result I don’t have spasms and other issues. Together, these features of my injury make me a rare case. I primarily meet individuals who have functionally complete injuries (“A”s) and I’ve met some “incompletes” who walk most or all of the time. And I feel stuck in the middle. The severe injuries push recovery initially but usually lose motivation with diminishing returns. There’s a lot more to do than cultivate twitches in unresponsive muscles: adaptive sports, managing your own care, trying to live a good life, navigating a landscape seemingly built with the goal of excluding non-bipeds. The “incompletes” walk and usually continue to engage in extensive amounts of physical therapy both by themselves and in cross-fit type environments with the goal of improving their walking.
When I walk it feels like I’m on a tight rope. It takes all of my brain capacity and any strong breeze or stray sidewalk crack can tip the scales against me. I use my hot pink crutches about three times a week to slowly parade down the sidewalk in front of my house. Ben is next to me as careful spotter. I need all of his attention as well. I’m not doing it because I think I’ll be walking as a primary mode of locomotion. I have a strange fascination with walking like with a difficult new sport. It’s probably better if I think of it as slacklining. I enjoy the challenge of slacklining. I enjoy progressing at it. The practical considerations don’t motivate me. I’ve learned that careful goal-setting is the key to mental health.
Practically speaking, what really helped me was being able to stand. I was not certain I could continue lab work until I learned how to stand next to a lab bench and grab the things inevitably stored out of seated range. I stand to reach pretty constantly: in lab, in the kitchen, when I want to impress the oglers at a neighborhood bar. I currently stand primarily on my left leg. My right quad is still too weak to hold me most of the time. Starting about a year and a half ago, I have been able to keep my right leg locked under me if I have help to push it straight.
I always find it fascinating to think of the small size of the forces involved. It’s just a light push to get my weight on top of my own leg. But what feels like a nudge to my hand feels like an immovable boulder to my quad. I have a small range of movement in my knee through which the right quad can hold on. Beyond that the boulder rolls away. This is what paralysis feel like to me: weight. My left leg feels a lot lighter than my right. My arms feel weightless.
After I got the keep-your-right-leg-locked strength, I decided that I wanted better standing. I wanted my right leg to participate. My idea was to get a lightweight brace for my ankle that would help my right quad by pressing into my shin. At that time I used about $13k worth of brace — extending from my right hip to my right toe — to walk. It’s a big, bulky thing with some electronics in it. I can’t wear it sitting for long because it cuts into my tiny hamstring. I was ready for something ultra-light. Which is my usual approach to fun outdoor activities. Like slacklining.
First, I had to convince my general practitioner to prescribe it. This was pretty iffy because he doesn’t understand anything about paralysis or my injury and considers it his job to handle all of my complaints himself, without tangling with “fancy specialists.” Once I made it past the gatekeeper I went to the only orthotist in network — Hanger. The people who didn’t do a great job on my first brace. I remember all the worry. Would the orthotist disagree that I was ready for an AFO? Would this brace be as poorly fitted as my first one? I remember his surprise with how little function I had in my right leg. I showed him pictures of me standing I had posted to Instagram and he seemed reassured. I selected the brace style based on some guesses and left.
Back in the orthotist office, after some adjustments, I was able to stand at the parallel bars using both legs. My plan had worked. The brace provided enough support from below that I was able to use my weak right quad. But only in the locked straight position. I stood. I smiled. I thanked him and I wore the brace home.
Here is where I surprised myself. At home, after standing in the plant room and standing in the kitchen I tried taking a few steps with the walker, which I was using to get up off the wheelchair. When I bent my knee and placed my right foot slightly in front of me, I was able to shift my weight onto it and lock my knee out again. It felt right on the edge of possible those first steps. It was slow. But I was walking without an electronic brace locking and unlocking my knee for me.
What was obvious right away is I had much better balance with the ankle brace than with the KAFO. Walking was slower due to additional seconds I was taking each step to carefully lock my knee… but it felt so much more natural. Definitely lighter and more ergonomic. I’ve basically stopped using the big brace. And I’m getting better at using crutches now than I ever was with the KAFO. It feels rewarding to progress at slacklining in this big way. I have no practical goals, but aesthetic ones. One day soon I see myself getting on Ben’s motorcycle while wearing my two ankle braces. We attach my little pink crutches to the back, on the trunk. We take the back roads winding to Julian Pie Company and I crutch to the counter and order a pie.
And then we kept driving. And the happiness was bitter-sweet, because I can’t look at the domes with the same hunger. I don’t have any of the old keys. I can go as far as the parking lot for each. And that feeling breaks my heart. I am locked out of my old home and I can just look through the windows.
I’ve been elated. Somehow the stress and the last-minute bustle and the long grind leading up to the event: prioritizing, at the same time, publishing the paper and writing the thesis and working on the presentation. (I don’t multi-task well and would have liked to knock those off in series, not in parallel.) I think all this combined to create a dramatic finish, in which despite low odds I pulled off a solid talk, and an oral exam afterward that almost felt like an interesting discussion with colleagues. I expected grilling and my committee to quickly hone in on my gaps in knowledge. I expected to lose my way and stumble through the talk. Instead, I felt really good. The funny thing about the PhD defense is that, once your cabal decides that you are ready, it is just a matter of jumping through the hoops. I knew I couldn’t have failed — the odds are really low — but I wasn’t sure I would be able to do it well. And I proved myself wrong.
