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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.

Becoming even more Californian

Surfing! Letting the water pick you up and carry you really quickly to the beach. That blast of speed is addictive. At first I was too scared to look back as I paddled: the wave looks so big right behind you. I just listened for the rumble and did my best to figure out the timing. And then turning? To somehow remembering to put the paddle in your hands into the water and steer. The first day I just let the boat wash straight towards shore while feeling speed. Once that started being predictable, I started to try and take control.

I think my favorite part about surfing, so far, is the contrast between the wipeout and the consequences. I had big, dramatic tumbles. At one point, while trying to go over a wave, my boat was thrown straight up: I saw my legs rise up into the sky and I slowly flipped backwards. Well, it felt slow. I won’t forget that sight for a long time. And after all that drama, I landed into the soft water, unbuckled the seat belt, and swam to the surface. I didn’t even get water up my nose. So far, falling in surfing has been fun. If you manage to stay away from the beach, that enormous force can’t do much to you. (Of course I also haven’t surfed big waves…)

The surfing also felt like a culmination of all my scuba diving and swimming. I’ve invested in turning myself into a water athlete and this is another payoff. I can’t imagine my old self being able to do this. I was so happy to wipe out. I was so content to be dunked under water again. In surfing you constantly make a choice about where to put your body in relationship to the wave. You can surf scared of the water, scared to tumble. Or you can put all that at the back of your mind, which makes it easier to catch a wave and make the right choices.

But, philosophy aside, this post is about surfing with High Fives. I got to meet adaptive athletes from all across the country. Eight of us surfed — a mixture of veterans and complete beginners. We represented every level of spinal cord injury: from surfers who were able to stand up to those surfing prone. To surf I used a waveski, which is somewhere between a tiny kayak and a large surfboard. You sit on it and use a paddle to steer. It has a divot for your butt and two for your feet. A belt at your waist keeps you in place. It was really fun to use!

I loved watching the other athletes learn. Each of us had to figure out how to make it to the water with our boards and how to move in the surf. I watched the machinery come together: a system of watermen and surfers with a role for each. It wasn’t planned. It happened through the knowledge, the good intentions, and the careful attention of all involved. I find this process very rewarding. We figured it out! We fit together. We ended each day grateful and tired and fulfilled. This experience is a level above pure athletics. A trip like this reminds us all how good people are, how much better we are together, and how rewarding it can be to give and receive.

So, thank you. Thank you to High Fives for throwing us together. Thank you to all the athletes who loved being out there. Thank you to the volunteers who gave so much. And thank you to my awesome teacher, Rob, who was somehow my perfect match in attitude and approach. I am so grateful I met him. Luckily enough, he lives an hour from me in Santa Cruz. He is holding onto a waveski for High Fives and invited me to surf with him any time. I already made one trip out. I’ll be going again in July.

[photo credit: Chris Bartkowsk]

 

The Symbolic End

 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.

 

So, I am a little in love with academia right now. I guess that’s how you know you should apply for post-docs and stay. During my post-defense party, I said out loud: I would do all this again. I would go and get a second PhD. People laughed. My advisor threatened to quote me on the lab website.

I’m now looking forward to a productive summer. There’s the excitement of reading about other labs and imagining yourself there. It’s time to look for jobs and wait for reviewers to get back to us with improbable suggestions for additional experiments.

But first, this weekend I’ll be driving down to the little California surf town of San Clemente. High Fives invited me to a week-long surf camp, and I’m very excited to go.

Officially moving towards the future.

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.

My first time in a chair on skis.

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.

Doctors… and a Walking Update

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.

The Mind Matters

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.)

 

On being a cyborg

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.

The Lagging Leg Chronicle

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.