I just got my new orthotic for my right leg. This is the stance control technology I talked about in previous posts. It took six months from the time of my first appointment, but I finally have it. I haven’t talked enough my walking on here so this is a great opportunity.
One thing you may not appreciate is how easily your lower limbs carry you over ground. You don’t think about it. The pattern for the movement is stored (mostly) in your spine. A complex network allows for the necessary adjustments and the smooth gait. Don’t take this skill for granted. After my spinal cord injury, I have to plan each step. I actually have difficulty walking and talking — it feels like multi-tasking. It takes so much work to get and stay vertical. I have a lot of practice left before it starts feeling smooth and second nature. Or it never will again. How weird, to think I may have lost that ability even if I regain all the necessary muscle connection.
I started walking six months after my injury and have progressed from parallel bars to pink crutches. I’ve been walking with one ankle brace (left AFO) and one brace that goes from my thigh to my ankle (right KAFO). My right leg has been locked straight, creating weird compensations.
Here is a video of me walking in a nice park a couple of weeks ago:
I’ve wanted a stance-control brace, which allows for my right knee to bend when I step forward and locks my knee straight when I weigh it. One of the reasons is to strengthen my right quad. I’m hoping that walking with a brace that I have to use my quad to straighten will provide additional key stimulation to that lagging muscle. I’m hoping to break through my plateau using this as well as a couple of other new tools and approaches. We will see.
Here’s a video of my first walk with my new brace comparing my gait to the old (white) AFO. I’m going to need some PT help to start correcting my gait after walking with a locked knee for so long.
Last week I went to a fabric store in Berkeley. It was the kind of local, organic, hippy experience that I love. A space crowded (with objects) and holding secrets and surprises. The kind of place I worry isn’t for me, any more. The wilderness equivalent of retail. And I’ve had to stick to the paved options.
Well, I managed to thread my way through it. Like a corn maze, I could only take one path to get to many of the shelves. And I found a beautiful print that will be laminated into my new leg brace. After my purchase I needed to use the restroom before driving home. A quick check up and down the street did not reveal any other promising businesses. I asked for their bathroom key and was directed to the back. I joined another woman waiting. We chatted for a bit, laughed together about the very obvious cloud of pot smoke coming from that room. I was eyeing the door, which was partially blocked, like many of the other things in the store, by a shelf of fabric.
With my companion watching I measured myself against the entrance. Wheelchair definitely doesn’t fit. She wanted to know if she could help. Something about her demeanor disarmed me. I have trouble letting most people hold the door for me. But she was looking at me like at a fellow human. There was no sign of pity and the usual barrier. I let her give me a piggy back ride into the bathroom. We were so happy afterward. Like we won a game together. She awkwardly said “thank you” to me and we both laughed. I know she felt thankful that I let her help.
Last week I was also searching for a place to stay on Maui using AirBnb. Usually I carefully look through the photos, pick a place that meets my needs, and then message the host to explain my situation and ask additional questions if I need more information about access. This time my top two choices denied my request and changed their availability when I told them I was in a wheelchair. In response to my question about beach driving distance, one woman simply said her place was not for me (it seemed perfect). A second gentleman said he just realized he was missing some paperwork. Another host said the shared kitchen would be too crowded with a wheelchair. Poor excuses. It felt like a slap in the face. My agency was taken away. All because of their anxiety over hosting somebody with a disability.
At it’s best the wheelchair is a shortcut to the kinds of genuine interactions that bring me joy. Most commonly, though, it puts up a barrier that squarely places me in “the other” category, making real interactions with strangers impossible.
It’s been quiet on the blog lately. And we have a few more weeks of my relative absence, I think. I’m graduating this Spring. I’m defending my thesis on May 18th. So, until then, there will be lots of 12 hour days and my head buried in the science and the business of wrapping up and taking my leave. I’ve spent a long time in graduate school. This past year and a half have felt especially long.
After my fall my professor suggested I stay an extra year to re-gain my footing. Last May I certainly wasn’t ready to look for jobs or wrap up my projects. I’m glad he gave me this time to be slow, unproductive, and busy with the changes in my body and my mind. I feel a little self-conscious about how difficult it was to concentrate and to feel that what I’m working on matters. Last January I was incredibly grateful to begin some data analysis for other lab members. It felt like taking a step closer to normalcy, to recovery. I really wanted to show that I can still contribute (and to take my mind off myself). But that momentum waned. I had to find new reasons to keep doing science and accept new limitations. This extra year was an adjustment period. But like with moving paralyzed legs, what can seem impossible on day 1 and day 2 eventually yields, unravels, and shows you the hidden pattern.
I learned this first while doing research. One of my favorite projects is studying the embryonic origins of our reproductive system. I had to learn how to dissect mouse embryos from every stage of development. This started with my destroying each soft, translucent, jello-like mass with my clumsy hands. I was so intimidated. Looking at the little blobs, I couldn’t even see organs. How was I supposed to dissect them out and make beautiful images? But, with repetition and many mistakes, I figured it out. I still have a memory of what that first embryo looked like to me: like nothing. And now when I look at the same blob I can see the gonad and the spleen and the kidneys, etc etc. I learned to see, I learned to collect little jello slices of genital ridges. And I learned some pretty cool science. So, I’m ready for the next challenge.
Everyone is invited to my talk at 2:30 on May 18th. I’m serious. I would love to see you. I’m probably going to cry.
This past weekend I finally took advantage of all the fluffy white snow that has been dumping on the Sierra since Thanksgiving. I had my first mono ski lesson (downhill) and my first try at adaptive cross country skiing.
I have to admit, the idea of skiing scared me last year. I wasn’t ready then, right after my accident, to try for any more excitement. When my therapist brought up downhill skiing as an adaptive sport that is very close to the able-bodied version, all I could think about was the possibility of injuring myself again.
Now that I’ve tried it most of those fears have melted away. It feels much more secure than the upright version. Once you’re strapped into the seat, falling is easy and painless. (Getting back up is a little more involved.) In addition to the single ski under your chair, you get two outriggers: tiny hand-held skis that are used to balance and steer. They convert between pick mode, which lets you push yourself around, and glide mode, which you use on the downhill.
Mono skiing day one doesn’t feel as intuitive as the upright version. Small movements with your arms translate into large turns that are further accelerated by shifts in body position. I kept doing hokey stops. Or dumping all my speed and then tipping over. But it was certainly fun. I got a good number of laps on the bunny slopes. I have the arm strength needed. And the balance required reminded me a lot of white water kayaking, which is fun for a similar reason. Though I am much more terrified of flipping into the water than into the snow.
One of the weirder parts of mono skiing is getting off the chair lift. You mantle on the picks to let the chair lift under your ski chair. To get off you have to throw your momentum forward, which feels a bit like front flipping into the snow while seated. From height.
I don’t have any exciting skiing videos to share with you yet, because Ben was learning at the same time I was and filming mid-run is a lot to ask. And because that first day I went slowly and carefully and without much grace. But here is some footage Ben captured towards the end, when I returned to the headquarters of Achieve Tahoe, where I went for my lessons and rental.
On day two I tried the adaptive version of cross country skiing. It was a reunion with Mark Wellman, of adaptive climbing fame. He agreed to teach me on my first time out. I used to do a good amount of cross country skiing. Unlike everybody else, I always enjoyed it more than downhill. Perhaps because it was the way I learned to ski as a kid. It always felt easy and I loved the brutal physical punishment.
Sitting down, the analogy holds perfectly. Downhill is harder technically and more involved. The bi-ski for cross country, which has two skis under the chair, is easy to balance but harder to steer. The arm workout of double-poling is like nothing else. I can use my hips and core to help push — which translates into a day of crunches and shoulder dips. And a rare opportunity for me to get some very good cardio.
Going through the trails up in Tahoe also felt like the closest I’ve gotten to hiking and moving through wild terrain since my accident. It was wonderful: no pavement in sight!
I’ll definitely be back for more of both. A day of each during the weekend might be my perfect combination. The downside is I can’t go as much as I would like. Achieve Tahoe, which is the operation in my area for adaptive skiing, is pretty much booked solid until they close at the end of April. I got lucky and got off the waiting list once. I have one more lesson coming up, though, before the season ends.
I’ve been making the rounds with doctors. Which means starting my day by recounting my fall to a stranger.
Dentist: So, if you don’t mind me asking, what happened?
After a pause, I answer: “I had an accident a year and a half ago.”
Dentist: Was it a car accident? What happened?
Alina: It was a rock climbing fall outside, in Yosemite.
Dentist: Were you free climbing El Capitan?
And then I have to explain more. I resent their morbid curiosity. My gynecologist asked: “So, what happened to you, honey?” None of the visits recently have anything to do with my back or my fall. But the doctors pry the information out of me and then make suggestions like: “Well, you’re lucky to be alive!” They are so used to being in a position of power that they don’t realize what they’re doing. I think their lack of empathy and lack of professionalism is a serious problem. But I haven’t found a way to call them out on it. Again, the asymmetry of power in our interaction makes is hard for me to say anything. I try to convey my discomfort with tone and body language. They plough forward.
Sometimes you don’t know what you’re missing until you are given it freely. I have been working with an amazing orthotist to find a new brace for my right leg. When I sat in her office she sat down across from me, looked me in the face, and asked me what I needed. She listened to me for a long time and then offered suggestions. The first orthotist I went to, a year ago, literally and figuratively talked over my head. I went with my PT and the two of them stood over me and threw jargon back and forth. I had no idea what was going on. I was so happy I was getting closer to walking that I didn’t want to interrupt. But there were serious issues with the brace I got and I didn’t understand enough about my options to complain. So, finally, this is being set right.
The brace I’m getting has a new technology called “stance control.” What this means most basically is the brace keeps track of the phase of my step: am I swinging my leg forward or putting it down to weight it. Depending on the phase, it either locks the knee or lets it swing freely. This allows a much more natural gait. Instead of swinging sideways a right leg with a straight locked knee I will be able to step it forward and then weigh it.
In the meantime I’ve been walking with crutches on the Stanford track. I’ve gotten up to a full lap — with two rests — which is a quarter of a mile. I’m not yet to the point where I can handle the variable terrain of shops and sidewalks in the crutches, but I’ll get there.
My goals for walking depend on getting a better brace. But the technology available is old and basic. I know prosthetics have gone through a renaissance, recently, with designs that are tailored to an individual’s biology and activity level. In contrast, prosthetics are much closer to one-style-fits-all. There are not many choices and not much innovation. I have a big, heavy, plastic sheath that straps on with velcro and has aluminum struts on either side with a hinge at my knee. The hinge is manually locked or unlocked by a bar in back. It’s way too much brace for my small frame. It’s heavy and makes me use an unnatural gait. A stance control brace will be a huge improvement. My orthotist will also try to find a material and a level of support that is appropriate for my body,
There is still a huge gap, through, in what is available for prosthetics vs. orthotics. The difference in innovation might be because prosthetics are a sexier problem to work on. Or perhaps an easier one? Is is easier to replace a limb or to make an existing weak one function? There is also a greater diversity within paralysis patients than in amputees. In any case, I hope the future brings more innovation in bracing.
I’ll end with sharing a short video of me walking today. It shows a lot of my improvements in balance, strength, and speed recently. It’s also not beautiful: you can see how awkward it is for me to move my right leg and how much I have left to go. But I’m happy with the progress.
This is going to be another post without much action. The action posts will happen. But for now I want to try to document another change I’ve noticed. It may have been since the diving trip. It’s hard to say starting when, but my mind has been at ease recently. On the anniversary of my fall I wrote that my adjustment to life after SCI felt entirely physical. My mind was lagging behind. But a switch happened. There used to be more anguish. More moments of panic and regret. I can’t say it has been easy every day. And the hard days I will remember for a while. But the recent ease — into something closer to the consistent old happiness — is worth writing down.
Acceptance is a funny word. It does not mean giving up, as I initially thought. And there are degrees of acceptance. I am learning to push forward with less fear. Especially less fear in the quiet moments, when you’re not rushing to the next activity and you don’t have a plan.
It didn’t happen because I’m walking on crutches or because I think I’m close to recovery. The longer I spend doing this, the longer the road looks. It is probably infinitely long, But I have finally accepted that I’m here and my reality has a much different shape and focus than I ever imagined as a kid. But it will be no less interesting.
I’m slowly letting go of the tight reigns on “progress.” After a year of endless pool laps, slow bike rides, and vacations to rehab centers, I’m ready to compromise. I have a difficult relationship with adaptive sports. I haven’t been interested in activities that don’t exercise my legs. This greatly limited my choices. But finding happiness is finding that balance, which is different for each person, between investing in the future and investing in the moment. I have reached the limit of how long I can live doing strictly future useful things. Yes, tracking progress and optimizing recovery brings me joy. But I’m ready for something frivolous, too.
So I’m going skiing. And I’m planning a Spring break trip to learn how to paraglide. Coincidentally, the adaptive paragliding center is near Salt Lake, UT and I can sneak in lots of rehab at Neuroworx at the same time. (So not entirely frivolous, but a compromise.)
I recently listened to an interview with Eric Valor (EricValor.org), an ALS patient and self-proclaimed “world’s first fully functional cyborg.” Because of the progression of his disease, he is dependent on a ventilator and communicates with the world by controlling his computer using an eye tracker. Before his diagnosis, Eric was a surfer, snowboarder and self-taught IT guy. Since his paralysis, Eric has learned the necessary biology to become hugely active in the ALS community. He runs two non-profits, a patient advocacy group and message boards with the goal of evaluating ALS drugs and bringing new treatments into existence. In his interview, he talked about the freedom he experiences without his body. How in the past it was a distraction with its needs — but now he can focus. I’ve been thinking about his statements quite a bit. He has accomplished so much. And the internet is the perfect boundless realm for his active mind. It speaks to something fundamental about being human: our minds can be released, our intelligence and creativity isn’t tied to our senses or our physical experience.
If that seems obvious to you, then I would have disagreed with you before I heard of Eric. My experience with paralysis has been a push in the opposite direction from Eric’s. Eric and I sound pretty similar starting out: he wanted to be an astronaut, he was deeply passionate about surfing and lived near the ocean. We both had an identity intimately tied to our physicality. But he feels free from his body. And I feel closer to mine. I’ve been thinking more about it, I’ve been straining to listen to it’s first weak signals, and I’ve been more aware of it’s strengths and limitations than ever before. Pre-injury I set goals with my mind and pushed myself in that direction, my body whirring quietly in the background like a given. Things used to break and strain and injuries used to come as a surprise and a betrayal. But now I’ve learned so much about what is gone, what is still there, and what is emerging. I feel closer to it than ever before. It can’t shock me now — I see the changes coming.
The difference may be due to how much our bodies are affected. Perhaps with disability our minds are pushed closer and closer to our physical houses, until we can’t communicate any more and are set free. Just a theory. I’ve been thinking about bodies a lot.
I’m usually not motivated to write by anger and frustration. But I’ve had a small battle brewing that has been a sink of energy and a useless distraction. So I feel the urge to vent.
After my climbing accident I took three helicopter rides and was at three different hospitals. I had two surgeries. As a result, a year later, I still get a steady stream of medical bills.
After I came home, I careful read my insurance benefits so I would be prepared for what was to come. And then nothing that happened matched my expectations. My helicopter bills totalled a hundred thousand dollars. The helicopter companies tried to trick me into signing statements that I agree to pay the portion of the bill not covered by insurance. They claimed my signature was necessary for my insurance to start processing that claim. But I had already recieved confirmation from my insurance that they were working on it. Insurance paid them twenty thousand.
The Stanford Hospital bill was triple what I expected. I was terrified. It took two days of phone calls but I figured out that the Stanford billing department made a mistake and charged me for a single occupancy room. Which is thousands of dollars for my six day stay. Which is not covered by my insurance. And then a month later I got another bill from Stanford. Again, for that same hospitalization but a different amount. I also got billed twice, again two different amounts a couple of months apart, for my outpatient surgery.
Talking to the Stanford Hospital billing department and my insurance has been like deciphering the broken codes by which two enormous machines communicate. And when they make a mistake, I lose big sums of money. I just got a second bill from my rehab hospital. For the same stay I already paid for, but now billed at an out-of-network rate. I had to call about this, explain for an hour, have somebody “look into it.” Earlier this month I got another bill from Modesto, the first hospital I was flown to, for seven dollars. It all baffles me. I don’t understand how this system can be so opaque and so broken. Why do I get lists of billing codes in the mail and my total, instead of a document I can read and understand? I am lucky that I am stubborn and not easily scared by official looking documents. But not everyone knows to fight.
I worry that the process is cryptic and riddled with errors to prevent effective patient self-advocacy. And to increase the bottom line. Stanford made two mistakes with my case. They are also the third most most profitable hospital in the country. Conversely, there is just no incentive for hospitals and insurance companies to invest in making it better.
I wish I didn’t have to waste my time and energy on this. Thank you for listening to my rant.
In other news, I’m making lots of progress with crutches. More on that, and a video, later.
This is not a huge update… not a Hawaii-sized post… but it makes me happy in a wonderful, floating way. I’ve been worried about my right leg — the lagging leg — since I woke up from the surgery and noticed the asymmetry. While I could kick with my left leg before I left the hospital and could feel both legs equally, my right leg didn’t have any movement for months… no twitches, no response. In March last year a muscle in my quad started listening. But, still, I wasn’t able to move any part of my leg. I wasn’t able to hold the small contractions for very long and they couldn’t fight gravity. But: two months ago my right hip flexor started taking off in strength. I noticed a weekly difference in how high I could lift my knee. And now, just this week, I was finally able to do little kicks. I can sit and use my right quad to swing the lower part of my leg. Hooray! If this trend continues I will soon be able to lock off my right knee while walking and standing. I will no longer need the awkward heavy knee brace stuck in a straight-leg position. Transitions from using the chair to walking will be easy… will be instant. How crazy.. how incredibly slow and creeping this healing process has been. Every day I feel closer to my legs moving themselves. I am experimenting with how I shift positions and get dressed. Things feel so easy.
The dive trip was a little bit of a risk: I wasn't loving pool SCUBA and I had no chance to try the ocean before we left. I also couldn't find a "handicap" diving instructor on Hawaii. So I passed the able-bodied, unmodified version of the certification's first part -- the pool sessions. Then we flew to Hawaii and in person, on our first day on the island, I finally convinced a dive company to teach me (I was armed with the standard referral letter, but telling people I was in a wheelchair over the phone still didn't go well.) Finally! Now all I had left was to pass the open water portion of the certification and learn to like it.
My first two dives were the next day. I wasn't prepared for how much the boat was rocking. Sitting on the edge of the rear platform, finally ready to roll in, I stared at the moving water and fought with the tank strapped to my back. I must have hesitated for only a few seconds.. but it felt like quite a while. Then I bit into the regulator and rolled.
My first dives went ok. I quickly learned how to check that the system was perfect before I hit the water, because adjusting anything after was too hard. For four dives I had to demonstrate the required skills to my instructor. Taking off my mask and putting it on again under forty feet of water was my least favorite. I also had to struggle quite a bit to show that I could towe Ben, my dive buddy, back to the boat in a fake "tired/hurt diver" scenario. Since I was using my arms to swim, grabbing him in the choppy water and swimming on the surface for any length with one arm was... an interesting challenge. But I did it! And I'm proud of myself both for trying (in the face of skeptical dive shops) and for succeeding. After I got my certification we did one more day of diving and then took a rest day. On that last day I finally got to experience the water outside my worries of tests and skills.. and it felt great. I was exhausted... on the last dive I couldn't even help haul myself out of water.
On our rest day we drove around Big Island looking for and finding natural beauty. (The southern tip! Green Sand Beach!) We also visited some farmer's markets and coffee shops/plantations. (I love the coffee grown there!) The highlight was the Tropical Botanical Garden. I got a solid walk -- despite protesting arms -- through its winding paths. The new and fantastical shapes to the flowers and trees were really fun for me. I love immersing in a completely novel landscape.
Then it was back to the water. I was eager to get to it -- a day of doing the tourist thing is usually enough for me. Our next three days of SCUBA went really well. I started feeling comfortable enough that the equipment and the technical aspects receded into the background and I could focus on the fish and the blue world I was finally able to explore. It felt so freeing: to wander, to follow strange creatures (in addition to the rainbow of fish, we saw turtles, manta rays, and even two sharks!), to get lost exploring. I haven't felt like that... like myself... since the accident. I didn't have to worry about stairs and curb cuts and the extent or perfection of the upcoming stretch of pavement. I just went where I wanted. SCUBA is my chance to exit a world that no longer feels built for me. Maybe I'm still in that painful adjustment period, but I'm so sensitive to those constant little differences on land. And to how wheelchairs are perceived. But there's no stigma attached to swimming with your arms. So underwater feels freeing. A blank slate. A level blue playing field.
I don't move like the other divers. But that doesn't matter. Under water, like on land, I mostly use my arms to get around. And while on land this causes me a lot of angst, it was unnoticeable while diving. To me this helps to narrow down the cause: it's not that I mind so much looking different, it's the difference in access. And the difference in other's perception. It is hard to convey how my interaction with strangers has changed. But that... that and all the new invisible fences is what I keep wanting to escape.
This diving trip ended with a manta ray night dive. We were armed with flashlights and taught how to aim them so that plankton builds up over head... and so the manta rays don't bowl you over. The plankton attracts these alien beings and we swim with them. Their slow largeness was really fantastic to watch. They can weight up to a ton! Check out the video.
Then it was time for another rest (and decompression) day before flying out. We visited Volcanoes National Park (I walked through more jungle) and then drove to the top of Mauna Kea (dormant volcano ~14K feet above sea level) to see the observatories, watch the sunset, and catch the views. Seeing the snow after all the days of sun and sand and water was jarring. After sunset we went to a sky party (the name for when lots of telescopes are out for everyone to use) and got some of the best star gazing I've ever experienced. Watching nebulae and the molten ball of Venus from a telescope the size of a microwave at the top of Big Island was an experience I won't forget.
This trip was overall a lot closer to the "vacations" I used to take: early mornings, packed schedule, a gradual buildup of exhaustion until the relief of your hard-earned rest day, and coming back your eyeballs brimming with new sights and beautiful pictures. I'm so happy I found a way to do all that again.