Tag Archives: recovery process

How to be Terrible at Walking

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.

Alina standing with pink crutches in front of a small house.

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.

Alina walking on a sidewalk next to the ocean using a big brace on her right leg and a walker.

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.  

Alina standing in front of her kitchen using a walker and two AFOs

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.

 

Looking for subtlety

Sometimes I feel stuck in a no-man’s land between two narratives. My understanding of spinal cord injury before my fall came from two kinds of stories. I thought you broke your back, you took a year off, you did your physical therapy, and then you returned to biking. You got back into skiing again. You even came back stronger. Certainly wiser. But the story arch hinges on coming full circle. Success is defined by this.

Alternatively, I thought you broke your back and lost everything. All sensation and all movement below the level of injury. Then you learn to expertly use a wheelchair and become a motivational speaker and a paralympian. You don’t do rehab. You learn and excel at an adaptive sport.

I am not a character in either of those stories. I have been injured almost two years and I am not close to either cinematic triumph. There is a sense that I should lay low. A sense of shame, perhaps. Suggesting that my story is not worth telling, is not worth sharing until I fit one of those narratives. That here, in the middle, is failure. Or worse: that the slow leg biking, the limited swimming is all for nothing. That I’m working towards something unattainable and missing real opportunities in the mean time.

I’m still not comfortable in a wheelchair. Still restless sitting all day as my legs and butt take turns falling asleep in my seat. I’m still not strong or fast enough to walk in a practical way. It always has to be a special even, with planning and preparation.

I’m probably not the only one who feels this way. Perhaps the slightly-limping, skiing SCI miracles feel incomplete. Feel in the middle of their recovery story. Feel broken and behind compared to another person on Instagram. Are we all just looking ahead, at the person we perceive at our finish line? And, obviously, that line is an ever-shifting thing.

Being a competitive and goal-oriented individual certainly plays a role. I’m working on tempering those qualities with patience. Aside from that, I think what’s missing is a more nuanced narrative. I want to learn how to tell a story that has subtlety instead of victory. That has uncertainty. So that when each of us leaves the familiar scripts, for whatever reason, we are comfortable to continue talking. We are not tempted to hide until we are less hurt or rewrite.

Back to the Mountains

Last weekend I returned to the Sierra East Side for the first time since my accident. I drove to Yosemite with a giddiness: a happiness and excitement that drive will always elicit. Tuolumne was the same white cathedral to glaciers and air. I had missed its granite flanks, its bones, its small pink flowers. It felt so good just to see it again.

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.

We drove all the way to Convict Lake, where a paved path circles the water. It was a beautiful spot and I was happy taking my slow walk. I still have some guilt about doing this to Ben. We go to the Sierra and he watches me kick pinecones on pavement. I wish I could offer more for entertainment. I know there’s a part of him that’s waiting for me to get out of the chair and lead him back into the mountains.

We’re in the Sierra for a memorial. Maria died last September and ten of us gather near Bear Creek Spire this weekend to meet with her parents, sit around a fire, drink and remember. Seeing her parents is difficult. On Saturday they hike up to the formation, the site of her fall, as far as the snow would let them.

The rest of the group abandons a plan to climb Bear Creek Spire and leave a memento on top. Instead, we disperse to do what Maria would have wanted us to do on the East Side: to climb or hike. To enjoy ourselves in nature and get tired. I bike around Mammoth. The trail is beautiful and steep and my best climb yet. I don’t finish it — it ends at a glacial lake — but I make plans to try again. We drive to the lake instead and I want to swim. Even with my wetsuit, the water is too cold to spend more than a few minutes. We abort and try another lake.

June Lake is perfect: a bright jade and surrounded by mountains. My favorite place to swim, so far. I love feeling the water against my face. I love how sweet lake water tastes. The ocean is always less gentle with me, but lakes remind of my childhood. Swimming and biking take me out of the chair. I cherish the days I spend more time moving than sitting.

On Saturday night we gather with Maria’s parents. They tell us about their other trips. They are slowly visiting the places Maria loved, the places Maria climbed, and communing with her through the experience. They want to come back to the East Side next year and camp with us again.

I want to be there. To help them continue to say goodbye. I want to come back for myself, as well. So I need to find a new peace in the mountains. Will this get easier as I forget the old self? Will this get easier as I continue to get stronger? Or will next year look very similar to this one? I need to spend less energy trying to tell the future and more time accepting the present.