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.

 

Remembering Fiona

I’ve been stuck, for a while now, in the gap between what I think I can say and what I think the situation deserves.
 
I’ve been in the role of trying to explain our choices, foolish and deadly in hindsight, to family and to friends. And though I’ve used all the skills I have to find the right words in that moment, it has never felt enough. The truth is, there’s nothing I can say that will help. I also don’t think we can learn much from death. And if we try too hard to be scholastic, to be clever, to extract meaning… I think we lose the bigger picture.
 
What I believe in is the freedom to be wrong. To be unlucky. To be hurt. And I think all of us deserve love even if we go out into the mountains and don’t come back. Or just barely come back. Yes, it’s a waste to be young and healthy and at the beginning of your career and have a rappelling accident. It’s a huge loss. But it’s also a loss, every day and at every step, to try to prevent this person from being at the top of that belay station. I lost a friend who has been with me since middle school. We’ve been bouncing between each other for so long I didn’t realize the full extent of what I was missing until weeks later. We’ve bounced ideas about the world, skills, friends, fears, anecdotes, pictures of our cats. She was my midnight phone call and I don’t think I can convey here what an exceptional person she was. I expected her to be president. She had all the skills and the network and the genuine goodness and optimism. And losing her is a big loss for the world.
 
 
But. I’m not going to pretend that we can walk any of it back. That we can cut Fiona away from her choices and leave behind just Fiona, alive for many more years. She was doing something she had the skills, the experience, and the passion to do. That’s enough for me. She is justified in her choices. I trusted her with my life many times. This accident doesn’t change how I see her. How competent she was. Or how right she was. The world is an unpredictable, chaotic place. I’ve learned to step back and not try to find patterns in every unfortunate thing that has happened. Without meaning we can still grieve for our losses. And resolve to be kinder, more loving, and more appreciative of the people around us.
 
Where you stand now is separated by a paper-thin veil from being my Fiona. Or being me. Our fear and discomfort around death and disability pull us to create illusions of control. Mental log sheets of risk. And though I don’t think the usual calculations are useless, I do think they work more to create a feeling of comfort than a predictable result. Yes, we can mitigate risk. But I don’t see a significant difference between what happened to Fiona and what happened to a friend who was hit by a car on her bicycle. Or a man who I met in the SCI rehab hospital who slipped walking from his pool to the back door. Things happen. And the context of mountain sports can be a distraction.
 
When I was in the hospital, doctors constantly asked me what happened. And when I said rock climbing accident they made sad clucking noises and knowing nodded. Suggesting that’s expected, given how dangerous rock climbing is. Suggested I did it to myself. But my many car-accident-created companions were treated as victims and unfortunate souls. There are risks accepted and normalized by society. And risks that are not. And the distinction is pretty arbitrary, in my mind.
 
The people who I admire most are the ones who didn’t yield in the face of loss and grief. A friend who got a high level spinal cord injury paragliding and then went back to paragliding. Fiona for visiting me in the hospital for a week after I got injured and then going on a rock climbing trip. The widower I met right out of the hospital who doesn’t regret that last mountain bike ride with his wife. The people who loved us and continue to love us. We may seem foolish and fanatical for making these choices. But unless you’re inside my head, you don’t know how it feels to step back. To make a different choice. Fear is both my favorite and least favorite emotion.
 
Fiona used joy as a tool to connect deeply to others. I want to use joy as a tool with grief. Like bubbles to lighten a brick of a meal. Like MDMA used to treat veterans with PTSD. Not to forget the sadness or push it out but to make it more palatable. When I first heard the news about Fiona I went paragliding. I needed the views and the sky and the peaceful floating to feel my feelings. And then I cried at the landing site, scaring my pilot.
 
 
I’m trying to find acceptance of the sad stories in my life. They are woven in so closely with the happiest ones. Acceptance of risk is easier than acceptance of consequences. The first is a choice you make once, in a split instant. The second is a choice you have to make fresh every day. It takes a lot more bravery to live the rest of your life.
 

A Year in San Diego

A lot has changed for me. I want to get into some specifics in other posts. For this one, I want to stay broad and talk through some big emotions. A year and six months in I still resonate strongly with the post I wrote earlier expressing all my worries about meeting new people. I have been struggling at this, as I expected. And missing my old community. For me there’s no replacement to meeting people through shared activity. It seemed that climbers were often my specific brand of nerdy outdoor athletes. People who love systems and a little bit of suffering. I am looking for them in places I have access to. If you have suggestions for activities to try, let me know. In the mean time I feel like Ben is taking on a disproportionate amount of the work of keeping me moving outside and rambling late-night conversations.

In an attempt to break out of routine I recently went to a workshop on “The Art of Connection” . It involved some activities that certainly challenged me, like a minute and a half of silently holding eye contact with a stranger. I’ve been trying to be brave emotionally and inter-personally lately. And I realize how stunted these muscles can get when traveling in my familiar circles each day. I have been avoiding strangers, in general. This is because of how exhausting it is to manage most people’s reactions to a person in a wheelchair. I have to deal with the look of pity, or with blatant staring, or with blatant pretending not to stare. It takes a lot to get somebody to finally see me, not just a chair with wheels. So this workshop took on a strong emotional charge. I started speaking to the room about my experience. And the facilitator did something that felt amazing. She asked, instead of assuming. She first talked about this approach in a more general way. That this is her way of interacting with all people. And then she demonstrated it by asking me. Asking how I like to be hugged. Asking where I would like to sit, how I would like to move through a room, etc etc. And the rest of the group took her lead. I finally got to explain how to best hug me while I’m sitting in a wheelchair. I got to explain how I feel about people violating my personal space, about doors, about chairs, about being carried. And this is how to make a person feel seen. It made me realize how much I hate all the assumptions about me. That this is part of the huge burden I feel with strangers. And that we can cultivate and encourage the kind of attitude that makes it all better. It was so easy to replace the group’s nervous hesitation with open curiosity. Once they saw it was “polite” to ask questions and that I was happy to answer, they had so many… and the distance between us vanished. That’s the art of connection. To encourage empathy by letting go of assumptions. We can so easily replace fear of the unknown with curiosity, learning and connection. Too bad it seems people need to be given permission to ask. And to assume is the default culturally accepted practice.

The experience left me puzzling as to how I can encourage more of this in my everyday life. And (at least for me) to be uncomfortable is an addictive feeling. I am now looking for my next inter-personal challenge.

More than a year later, I finally found my way back here. Not because something significant happened to me. But because I had a stark reminder of the power of our words. How our hopes deserve to be trapped in letters and how today holds power for the future self. I might be usual with how much I enjoy journaling. I’ve been doing it since I could write. But I think all of us, most of us, can find something in this process.

A friend of mine was recently in a climbing accident. And his serious injury excavated all the layers of emotion that sit tight around my own fall. All our calculations about risk and reward. The feelings of shame at the chain of failures that lead to the accident. The days of uncertainty and pain. The human will to press on, the endless optimism of healing. Every day is better than the previous. The mind wakes up with the body. You retreat often into sleep, hate hospitals, find a new and tiny routine. The world a pinprick of our previous world.

After I heard the news I opened up the blog he wrote in 2018 when he underwent surgery on both his shoulders to repair bilateral labrum tears. There I found all the pieces of recovery. I read again through his patience and persistence, the knowledge and optimism that got him through those months and back to his goal. And I have so much hope for him.

Adding Another Activity

Thanks to an Instagram post by Joe Stone, I was awarded a very generous grant from the Kelly Brush foundation to help me purchase an adaptive mountain bike. How I got here took a few steps, so I want to tell you the story. If you know me, you know I tell long stories. This is because stories need a beginning, middle, and end. Context is import. So, bear with me here…

Before my accident I was more of a road biker than a mountain biker. I preferred the grind of pedaling on pavement (especially uphill) and would dread the downhill section, which I always took at a conservative (“grandma”, to some) pace at the back of the group. Falling off a bike at speed scared me. So when I tried mountain biking it was a huge battle with that fear and my ego. It didn’t help that I was using a borrowed bike that was too big for me and going on trails that were decided not beginner. There was a good amount of walking and falling. I wouldn’t say it was fun. But it was challenging, beautiful and scary, and I like those things as well.

I decided to give it a try after my accident. And though I was, again, enamored of the setting (I rode in the hills of Park City, UT behind the National Ability Center) I didn’t feel a spark. I tried a bike that put my legs straight out in front of me. It was a monstrously huge bike with two sets of handle bars — one for steering and one for pedaling — and I was constantly messing up the transition between them. It didn’t feel elegant. Overall, a definite ‘no.’

So, fast forward to San Diego. I was excited to meet some of the locals I knew through adaptive surfing. I ended up arranging a test ride on Jeramy McGhee’s bike. He offered because he is the distributor for Sport-on, a company in Poland that makes a variety of hand cycles. His bike had a completely different posture than I tried before. It put me in a crouch position where I was resting on my knees and pedaling with my arms below me, at my chest. I spent about 10 minutes on his bike at a local trail. This was enough to make me curious, again.

But then came the precipitating event, one of true poor impulse control. Joe Stone posted an invitation to attend an adaptive mountain bike meet-up at Wydaho Rendezvous in the Tetons. It included free attendance, bike rental, group camping, and all meals. It sounded too good to be true. The meet-up was two weeks away. I wanted to go, despite having very little positive data on mountain biking (and some indicating it wasn’t for me). Plane tickets to Jackson Hole were too expensive, so I asked Ben if he wanted to drive 14 hours to the Tetons with me over Labor Day weekend. And Ben said yes. (I will forever be grateful for Ben’s willingness to accept and support all my schemes and bad ideas.)

Our next goal was to get the van ready for the trip. We had done very little to it since we found out we were moving and nothing to it since the move. It was pretty much an empty box with some plywood that was cut to fit the bottom. A mattress sat on the floor but was warped by the wheel wells on both sides. Over the next 14 days we attached and finished the sub-floor and put in a bed. I made thermal black-out curtains that velcro to the windows and Ben installed a new steering wheel with cruise control. Impressive, right? And so we were ready for the biggest trip in the van, yet.

Road trips are much easier when you carry a safe, protective home on your back. The snails have it figured out, I think. When we’re tired we pull over to any gas station, put up the curtains, and crawl into a queen-sized bed. Ben installed a rotating passenger seat so I can just spin 180 for access to the back.

We left Thursday night and arrived in the Tetons Friday evening. I started grinning as soon as we were within sight of the mountains. I love that part of the country and immediately felt that we made the right choice. And then we ate chili from a vat with about 50 other adaptive riders and an army of volunteers. The event was put on by a number of organizations: Teton Adaptive Sports, National Ability Center, Oregon Adaptive Sports, and Dream Adaptive Recreation from Montana. I was excited to meet so many adaptive athletes, including many that I knew from social media.

On Saturday it was time to bike. I had a great time on a cross country ride in the morning. The bike I was renting — the Bomber from ReactiveAdaptations — was much smaller and lighter than Jeramy’s but also had the same aggressive posture. It was a full-body workout to ride. Though it was an arm bike, I was using much more of my back and abs to generate power. And I was using my legs to cushion through the bumps and throw my weight to help steer. Going downhill head-first took some getting used to.. but overall I liked it. Though after the hill climbing my arms were limp and noodly by lunch time. I had a strong suspicion that I wasn’t going to last another cross-country ride in the afternoon, so I signed up for a downhill lesson. I wasn’t nervous until we were on the chair lift. Then I suddenly felt committed. Was this going to be way over my ability level? Could I just descend at a crawling pace? What if I flew off the trail? Did I even know how to use this thing?

Despite having zero need for speed and no previous interest in this portion before, I had just skipped the rewarding work of climbing and was simply facing the descent. Head first. It helped that there were as many volunteers as there were riders. Ben was right next to me on his bike. So, down I went. And suddenly I was making little happy woo-hoo noises and laughing. The trail chosen for us beginners was perfect: a banked turn, then a long traverse section with rollers where you can dump speed, and then another turn, and then more traversing. It felt like we were going down for a long time. I clutched the breaks the whole way. But I loved it. I saw the potential in it. With a little bit of practice I could be going about the same pace as Ben on the downhill. We could also go “hiking” together through rough terrain. With every lap I gained confidence and speed. I even caught a little air on one of the rollers and really enjoyed the minuscule taste of weightlessness. I guess that was it, I was addicted.

Saturday night the volunteers fed us tacos and each person shared their individual battle. There was the motocross athlete, who was also a huge mountain biker, riding his new bike for the first time after a high level injury. He was frustrated by expectations and unforeseen challenges. I talked a lot to a lady who was less than a year out from her T-level injury while mountain biking. She was just struggling to accept her new life. Nothing felt right. There was a person there for a second year in a row with a long and complicated medical history who had a pretty tough outer shell but was always very self-conscious about struggling. We were so very very different but all needed these specialized tools and our marginalized status brought us together.

On Sunday I did two downhill sessions. The beginner group graduated to more advanced trails. Towards the end I was struggling just to keep hold of the handle bars. I went from zero arm biking to two full days at elevation that weekend. And I got a new hobby for my trouble.

Mountain biking was a new thing to want, but not have. Because being an adaptive athlete is out of my budget. My road bike was four thousand dollars. My surf board, which I got used and I was extremely lucky to get, cost $800. And an adaptive mountain bike costs about 10k. Finding one used is nearly impossible. So we drove home and I looked for places that rented them out. The closest was in Mammoth. I was excited to give it another try so Ben and I took a another road trip and I tried a fourth kind of mountain bike. And then I wrote up all of my experience and applied for a Kelly Brush equipment grant.

You guys already know the happy ending — I was awarded a grant to cover more than half the bike. I don’t think I would have gotten here without an impromptu road trip to the Tetons. Or without Ben’s support. A new bike now seems tantalizingly close, though a month ago I thought it would be a years before I could raise enough funds. And two months ago I didn’t know I wanted one. Reflecting back on all of this is a great way for me to cultivate gratitude. And, again, to see how unlikely participating in adaptive sport is, and how key people and organizations make it all possible. It reminds me of how I got into surfing — another series of fortunate events that shepherded me quickly from complete ignorance to owning a board and winning second place in a surf competition all over one summer. I can’t wait to see what’s next for me and a bike.

The Physical Therapy Athlete

One of my worries with the move to San Diego was figuring out all the movement/rehab options. I loved doing pilates with Stephanie. How would the replacement look? Would I be able to afford it? Luckily, one of the first people I met in San Diego was Doreen, a physical therapist and pilates instructor who is interested in working with SCI patients. She had met with Stephanie at different Pilates conferences and was learning how to work with a client who has a cervical-level injury. Shortly after my move Stephanie actually flew down and did a workshop with Doreen focusing on developing a program both for her other client and for me. I felt really fortunate for such a smooth transition and I enjoyed working with Doreen but for the first couple of session I struggles with the schedule. As a physical therapist, Doreen follows a regular, insurance and field-perscribed practice of (relatively) short sessions. The 45-min session was one of the reasons I gave up on my cheap (co-pay only) Stanford PT option. That time frame is enough to warm me up, to begin to move. It always felt very cruel to wrap things up after 45 minutes. Somehow, Doreen then found me a time slot of two hours. And stretched our regular, insurance-covered session to that length. I am so grateful for her generosity. But now I’m burning through my 14 PT sessions per year, as covered by insurance. I may pay out of pocket after that, as I weigh my options. Working with Doreen has reminded me about the strengths of a sharp-eyes and experienced physical therapist. She has been expertly poking at my poor right shoulder, showing me lines of weakness and pain that travel from my neck to my lower back. We’ve been stretching that whole mess and doing simple exercises that somehow still border on the impossible. Hopefully with her help (and a lacrosse ball) I can stay on top of that old climbing injury.

With Doreen I’ve also been working on strengthening my glutes, hip flexors, and right quad. (We always start with punishing ab work, though — as per the punishing classical pilates training.) The atmosphere is more collaborative — we work together to figure out the boxes and props required. And often I start by showing her an exercise I’ve done before and then she modifies and extends and we end up somewhere different. I guess I’m writing all this to say that I’m grateful and satisfied here. And though this doesn’t quite look like the Absolute Center — and I do miss that community — I am glad that this is where I ended up.

My other rehab home has been Adapt — an exercise-based rehab place similar to Project Walk and a dozen others. Though I was suspicious of the predatory nature of such places (they tend to over-promise to attract vulnerable, recently-injured individuals and under-deliver while both risking the safety of the staff and the clients… but, that rant is for another time.) My hesitations were dissipated once I learned a few key details and had my first session. First, the place is entirely trainer-run and owned and operated. It isn’t making huge profits for one “owner” at the top. And they have a strong commitment to building community and providing many different kinds of opportunities. For example, they have an ‘open gym’ policy so, if you’re a member, you can come in at any time and use the equipment. They have free cross-fit and yoga classes. They also partner with many organizations to bring events like a surf day at the beach, adaptive riding (coming soon!) and biking. So, they seem singularly focused on improving the lives of their clients, which I value a great deal. And given everything I’ve seen in the organizations that work with the disabled community, this is not something to take for granted. I may have some inner rage about the horrible customer service I’ve experienced, but I’m going to stay on track.

Adapt also provided me with financial aid. Through their fundraising activities they are able to subsidize my sessions and I only pay a fraction of the cost. To give you more detail, if I were to spend two hours at Adapt a week, the full price would be $850/month. This is way out of my post-doc budget range. I’m grateful no-one is asking me to spend that much on my physical therapy. But many people chose to do this and find it worthwhile.
After a spinal cord injury the range of exercises that you can do on your own is staggeringly small. Of course with higher injuries that list is pretty much non-existent. But, at the same time, exercise feels really good. To move relieves most people with SCI of spasms, nerve pain, and just the general discomfort, stiffness, and aches associated with being trapped in one position for long periods of time. It’s not only about investing in recovery and walking again. Often it’s about sleep and pain management and depression. So, we pay what we can.

At Adapt my trainer and I work a lot on stretching and reversing the stiffness that creeps into the front of my body from being in a seated position all day. And then I do exercises that focus on challenging my balance in a variety of kneeling and standing postures. At Adapt I also tried walking on a treadmill for the first time since my injury. I did it in a harness that took off a percentage of my body weight and kept me safe. And without bracing for my right knee. Instead, the trainer positioned himself in front of me and helped lock of my right knee with his hand. I have to say I was highly skeptical that it was going to feel good. I hated treadmills before my accident and viewed the possibility of trying one with my braces on with genuine fear (and genuine curiosity) after. But why would I want to be strung up like a rat in a full body harness over a conveyer belt when all I needed to walk was my braces and walker/crutches? Well, I may be a skeptical person but I am also one deeply committed to trying new things. And not writing them off until I try them. So, up I went.

It felt like running. I quickly learned how to move my legs efficiently in the new system. My trainer needed to give my right leg just a small push and then I was able to keep is locked straight for the rest of the gait cycle. I was surprised by how little help my right leg needed; how strong it felt without the heavy stance-control brace. And how quickly I was walking. My pace was a mile an hour, which is about twice as fast as I walk on my own with the braces. It felt like a sprint! My heart was going and I started to sweat and I was grinning. What a valuable experience. How freeing it felt to move my legs without worrying about tripping or falling or losing balance. I found the added challenge of coordinating quick movement to be all-encompassing, mentally. And something valuable.


So, overall, I’m really happy with what training at Adapt has given me.
And I’ve noticed changes and progress, already. After two months of rehab twice a week I feel much stronger. I’ve noticed increased stability when I do many of the old exercises. But more importantly, I feel it when I walk in my braces. As frustrating and difficult as my new brace has been, I’m finally starting to feel progress. And that’s an addictive feeling.

Making Houses

Well, time passed. Like it tends to do. And the future became the past. And the unknowns resolved themselves into daily habits. Ben and I lived in a hotel and grew restless like the cats. And then we somehow found a place that didn’t require a construction project for me to use. And had a porch and spare room. The only problem is the high cost of rent. And living in a neighborhood of families and retirees.

I must admit, through the whole process of finding a place to live I compared my old needs to my new requirements and built up an entire complex architecture of frustration and resentment. Disability ages you in this way: half of me wants to live in a small, somewhat broken shack by the beach in a neighborhood of similarly-minded young people also crammed into humble lodgings. I want to smell the ocean and ride my trike to the surf break. But. All those places we saw had stairs. And narrow hallways. And bathrooms I couldn’t roll into. All the charming old places are built for humans without limitations. So, instead, we live in a development. With huge tiled master baths that also happen to accommodate wheelchairs. But this still feels like putting on a fur coat. I know my living situation hugely affects my mood and my sense of self. I felt living in a hotel for a month grind me down. So how do I rescue myself from this?

Well, that’s honestly me being overly dramatic. I do love our new place. And the ease (I can enter the garage! I have so much room to maneuver!). And I am grateful. It’s not perfect and the priorities I have now I haven’t quite learned how to own. But the cats are uniformly happy. And the two car garage fits a huge amount of gear.

I think the stumbling block that hurts the most is the issue of money. I used to pride myself on not needing much. And now, over and over, I see myself as having problems that are predominantly an issue of money. And I resent this trend. And I miss the privilege of needing less. Maybe this is why I enjoy working on the road trip van so much with Ben. This is a chance, on our terms, to create a space that I can use. And it’s a small enough project that we can afford it.

Time for a New ID Card

I’ve been thinking about the word recovery. How it relates to my current state and mind set. Am I still in recovery? After three years, am I trying to get something back that I had before? It certainly doesn’t feel like it. I feel like I’m working for something new. I’m not referencing old goals, old abilities, or old moves. My injury changed me so much that I will never move my legs the same way again. I’m not going to walk like I used to. I’m not going to bike or climb or stand or kick when I swim the way I did before. So I’m building something new. Not because I want to do the things I used to do in the way I used to do them… that’s certainly true. But that’s not a realistic goal and not my motivation. My goals are for the body that I have now. And I’m building the world’s smallest right quad… but I’m not going to get back what I had before.

Which brings me to the central point of this post (I think.) It brings me to the question of identity. What do I call myself? How do I see myself from that floating point our minds occupy right above our heads? How do others see me? I’m about to move to a new town. It’s time for some of my least favorite activities: packing, cleaning, and not knowing anyone and making new friends. It’s time to introduce myself to a whole new set of strangers. I’m worried about leaving the last group who knew me before my accident. People I climbed with and danced with and hugged at their level and followed effortlessly sliding through a crowd. I’m afraid of going through the process of meeting somebody and being wheelchair post-doc or wheelchair surfer or wheelchair neighbor. It bothers me to an almost inexplicable level. So I want to figure it out. It’s not that I hate wheelchairs. Though, I must admit, when I’m feeling frustrated it’s easy to direct my negative emotions towards the seat on wheels allowing me to move around. The wheelchair has a thankless job and I am part of the problem. But the reason I do this is in direct response to my environment. The wheelchair eclipses me like a scarlet letter, a lucky moon. It’s the first and often only thing people see. And that is a huge amount of work for me. I’m dreading losing my primary position as the agent and author of my identity. And that’s a hard thing to deal with for somebody who is a story teller, a deeply social person who already feels lonely. Or, at least, not as good at creating and maintaining relationships as I would like to be.

I’m used to creating communities around shared activities and experiences. I am no longer a climber (ok, that one is still hard to internalize — I can say it, though). I can’t make friends with all the climbers at UCSD. Am I going to go make friends with all disabled people? Am I going to pigeon hole myself? Somehow being in the “climber” clique feels good but the “adaptive surfer” identity feels tiny and limiting. There is certainly a difference in size. I’ve met most of the adaptive surfers living in the San Diego area already. But it’s more than that… it’s the wheelchair thing. To embrace that group feels like embracing the thing I feel is trying to blot me out. Have you ever rolled down the street in a group with more than one wheelchair? I have. It’s a parade. People stare overtly (instead of in the usual sneaky way) and children are gathered to the protective flanks of their mothers. It feels like erecting a wall.

And maybe it’ll be fine. And I’m just in crisis over an imagined problem that will resolve itself in a natural and pleasant way when I actually do move. I am a hopeless optimist, after all. I want to look to the future and see a slightly adaptive version of the life I saw three years ago. Not something that feels like doing penance. I want to build something new, not try to recover what I had. I want to bravely more towards the future, not just look for something lost. And I want to create an identity with the freedom every person is given.

A Trip to Portugal

When my professor asked if I wanted to present at conference in Portugal my initial response was a quick, enthusiastic “yes” (in my head). And then a host of doubts crowded in. But I’ve been training myself to say yes to experiences for so long that something small like almost three years of wheelchair life wasn’t going to sway me. I committed, registered for the conference, and then began planning.

Once I contacted the organizers I got chastised for “not telling them sooner” — even through there was no space on the registration form to specify my current main mode of transportation. Though I was asked about any dietary restrictions. Then, I was subjected to all sorts of personal questions when I registered for the “walking tour of Lisbon” — which was optional but included in the registration. Of course I want the walking tour of Lisbon! My personal favorite personal question: “but can you walk at all?” How do I even begin to answer that? Do you really have so little imagination that you can’t understand what an invasive, insensitive, and unnecessary question that is? I get it at the airport all the time. A chance to evaluate and re-evaluate my recovery with my shoes off in front of a stony-eyed TSA officer is the price I have to pay for flying.

My limited interaction with the conference organizers made it quite clear to me that Portugal would definitely not be accessible. So, I somehow convinced Ben to come with me. First, I want to say that I have many mixed emotions about this “care taker” solution to access. Every time I reach for this option I feel a twinge of guilt and defeat. Not only is this propagating my own helplessness, it is continuing to normalize this dynamic for the outside world. The conference organizers asked if I were traveling with somebody who would be able to help me out. So that’s what I did. Instead, I should have struggled. Instead of Ben carrying me through every obstacle so that it remains invisible to them, I should have just rolled to a stop. Ben did all the work. And so nothing will change. But I’m also such an insignificant minority. Disenfranchising me has no consequences. I can’t ask a large group of people to make significant changes just for me. But if they don’t, the door remains closed for others like me. Round and round this goes in my head. Is the right thing to take personal responsibility and only attend the events I can make work? And what is the alternative? How will this shape my career? Conferences are a large part of being in Academia. I like conferences! But I can’t ask Ben to attend every international conference with me (this was the solution my professor proposed when I mentioned my concerns — I hope he was joking.)

 

And so, here we are: in Portugal. We arrived a few days early to explore. I’m armed with a list of things to see and to eat (mostly pastries) from a Portuguese friend. I also found a place that rents out wave-skies. Unfortunately, though May is the beginning of the surf season, the weather is against us. We have an AirBnb in the beautiful surf town of Ericeira but it’s raining and windy. Instead of getting into a dark, frothy ocean we get wet visiting castles, looking for parking, and eating well. All the food is good. And cheap. And all the wine is good. And really cheap. To me these are the key elements of feeling ‘on vacation.’

 

After exploring the green, rural areas around the coast and into some mountains, we move to Lisbon. I think I enjoyed this part a bit less. The number of tourists is overwhelming. The streets are steep and alternate between cobbles and steps. But I loved the history, the architecture, the views and the monuments to writers. We tried nine of the 12 must-eat Portuguese pastries. I get to see a Roman aqueduct, which was built upon by the Moors, which was taken over by a Duke, and where a bailiff built a house. These onion layers of history were a good reminder of how young and simple we are in the United States.

And then we were off to the conference. I was disappointed that the charter buses from the airport to the ferry were not accessible. Again, Ben had to carry me. The ferry ramp was really short and steep, so I needed to be pushed. But once at the conference center I could finally move around on my own. Except at the poster sessions — which were in a small room with the easels forming very narrow corridors entirely clogged with people. I sort of circled the periphery like a wheelchair shark. Better planning here would have benefited everyone, though, as the crowding made it very hard to hear what anyone was saying and it quickly became stiflingly hot. And that is the parting thought with which I want to leave this topic. If we take the time to plan carefully and think about accessibility, we can benefit a much broader population than my ultra-minority of Telomerase conference-attending wheelchair users.

But I really enjoyed the conference. Most of the talks were great, I learned a lot very quickly, I got some good questions, and the Walking Tour of Lisbon was informative and incredibly easy compared to the self-guided tour Ben and I did days earlier. The conference ended on May 5th, the three-year anniversary of our first date. So Ben and I had sunset drinks on the beach, then a candlelight dinner accompanied by traditional Portuguese singing, with 250 Telomerase biologists. It was very romantic.

Announcing Big Changes

It’s been a whirlwind at work so, instead of the usual struggle to make time for writing I’ve had to struggle to make time for cleaning the kitchen and my hair. And that will be the pace for the next couple of months. A lot of good has happened. I finally finished writing that perfect cover letter to the professor of the spinal cord injury and regeneration lab I want to join. And I got a response, and a nerve-wreaking Skype meeting, and an invitation to visit and interview. I’m so thrilled this finally came together. My next professor reminds me of Richard Feynman. And I’ll be relocating to place I find beautiful, accessible, and highly surfable.

So I’ve been thinking about what it takes to move me to San Diego. I have to dismantle the life I’ve been building here for many years. I have to go through a garage that has remained a shrine to my old life. I have to sell my bikes. I’ve been thinking about selling my climbing gear. This all fills me with a great sense of loss. A letting go of hope. I’m finally faced with the irreversible changes that have been the day-to-day reality for me. But a second part of my mind still floats above the new routine. It takes a long time to reverse the habits and understanding built over 30 years. Letting go continues to be hard. Harder than nerve pain and imperfect bladder function and loss of sensation. I miss climbing. I miss it with my skin and my muscles.
I haven’t decided what to do with my gear.

I’ve also been thinking about how to land… how to find accessible housing. How to move through a new space. Will I be able to go biking by myself? How I am going to store and transport and access all my gear? There’s such a wall of small and large limitations coming up to meet me. A lot of my freedom now comes from practice and very specific circumstances… and Ben. To recreate all this in another location seems like a huge task. First because we’re not sure if Ben will be able to follow me to San Diego. Second because money is always the limiting factor. We’ll see. I have a couple of months and a starting point.

Aside from chewing on the logistics, which is a huge part of my life these days, I’ve been giddy about the project I’ll be working on. It felt so right, during the day-long interview, to be talking about spinal cord injury. I think about it all the time, anyway. And here is my chance to align both my interest and my tools. I feel so lucky to be able to do this. Lucky and humble. I have a huge amount to learn in order to do this successfully. But the size of this task.. the difficulty of me learning systems neuroscience and the difficulty of curing spinal cord injury… is truly exciting.