Author Archives: Alina

Teton Totality

Our eclipse road trip exceeded my expectations. I worked long days, somewhat cleared my schedule, and Ben and I started driving Friday morning towards Utah. My summer had felt busy… busy but somehow not productive. And, as always, time passed too quickly. I needed a vacation but still had deadlines lurking. I waffled but made the final decision to go a few days before.

My professor defines working every day on your “vacation” as “being an adult.” I’m not convinced quite yet.

After a day in Salt Lake City we headed up to the Tetons to meet friends of friends and join a large group of eclipse watchers inside a massive migration of eclipse watchers. As usual I thought everything would be fine: traffic, access, gas, parking, accomodations. As usual, Ben did the worrying for the both of us. This took the shape of an unplanned detour to buy a gas canister, fill it up, and strap it to the roof of the Element before we hit Jackson Hole. Rumors of Jackson running out of gas filtered down to us. It made me excited to see a somewhat post-apocalyptic scene in the ski town. Ben was worried about traffic.

Driving through Jackson was uneventful. We waited a bit at one light for one left turn… but that was the extent of the chaos. The streets were, indeed, completely full of tourists. But the gas stations were working as normal and we filled up again.

Once we were in the Tetons the scene was calmer, more majestic. It was my first time there and I was completely distracted by the rock and the views. I felt some regret about never making it out there as a climber and missing my chance to explore those mountains. We successfully found a spot in the group camp site we were sharing and then went for a bike ride. I was really happy that the park had long bike trails that were perfect for soaking in the views. I’m learning how to visit places like the Tetons and keep busy, do the things I can do, not grieve too much for the things I can’t, and enjoy as much beauty as my frame can hold.

The next morning felt like a real treat: we slept in (rarely happens), our new friends made us pancakes (the best kind of friends to have!) and then we made our way to the beach where we would be watching the eclipse. Though seeing the moon take little bites of the sun through the dark glasses was interesting and we enjoyed noting how the temperature dropped and the shadows darkened, I wasn’t too impressed until totality. I also wasn’t prepared for how new, how stunning, how surreal that sight turned out. It made me want more minutes of that pseudo darkness. Photos don’t capture the beaming of the corona, the sunset colors on the horizon, the experience of being in a landscape of subtracted light. Right before totality we saw bands of darkness move across the scene. Clear patterns of wave peaks and troughs. Sunlight unraveling into constituent parts. Sunlight acting like a beam coming from a single source. These are called ‘shadow bands’ and are wonderfully mysterious. The eclipse reminded us of our universe. It changed something so fundamental to reality that you had to stop taking it for granted. What does it mean to have a sun? I can go on and on.

Afterward, we took a walk and stayed long enough in the park to avoid traffic coming home. The eclipse trip was a success! And nothing bad happened except we accidentally forgot the full canister of gas at one of the gas stations.

The rest of the “vacation” was allocated for physical therapy and for some paragliding with Project Airtime. I was pretty thrilled to try flying. I have the opposite of a fear of heights. Views from above always fill me with joy. I’m excited about this new way of chasing them down.

The view at Top of the Mountain Flight Park

Paragliding is very weather dependent so our schedule revolved around texts to Chris, the person taking us flying, and his take on the winds. On days we couldn’t go we went biking up in Park City. Jeff at National Abilities Center, one of the amazing humans I feel incredibly fortunate to meet through my injury, hooked me up with a fun mountain bike despite very short notice.

Riding an off road hand cycle by Reactive Adaptations.

I’ve written a lot already. I won’t say much about Paragliding. Except to say it was just a taste — I hope to do more, later. It made me curious. The feeling is unreal and more gentle float than I expected. I love leaning a new world, feeling it open up. Leaning to navigate in three dimensions is a mind-altering experience.

Here is a video of my first flight with Project Airtime:

 

Looking for subtlety

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

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

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

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

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

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

638 Days

It’s easy to write about milestones or trips. But I want to slow down and savor the blank space between. Milestones are flagged and labeled as such by their undeniable physical and emotional heft. But I want to redefine that. How about the milestone of my first lazy Sunday? The milestone of spending another week committed to walking every day? The milestone of going to Pilates again on Tuesday? If we live our life hurrying to the next discreet, dramatic event, we will have wasted so much time. So, in celebration of the bank spaces, in deference to the quiet between social media posts, in search of meaning now and not tomorrow, I present:

What I do routinely, regularly, and almost every day.

I’ve been really happy with my standing progress recently. My morning routine is some stretching on my bed, some leg wiggling aimed at strengthening the right quad, and then standing for about an hour. (I also eat breakfast between those two). I’m currently working on taking my left knee off the foam pad, so that the only point of contact between me and the frame is the right knee. What’s interesting is that this seems absolutely impossible when I first stand up. But after about 30-40 minutes my body has adjusted. Maybe new muscles are firing? And my balance and strength greatly increases. I also do a lot of baby squats and weight shifts. Then I go to lab.

With swimming I’m working both to increase my breath capacity and to transition more power to my legs. Last week I managed my first kick set! I held on to a kick board and propelled myself through the water with just my legs for 50 yards. But that’s a traditional milestone. I also want to celebrate how slowly I swim now. I’m trying to stroke minimally with my arms so that I can focus all my attention on my legs. I’m trying to make sure my right quad and my gluts fire every time. There is a sneaky tendency to learn to forget. Learned obsolescence: a muscle is quiet for so long that you automatically skip it in your new motor pattern. When I just came out of the hospital I did everything with my left quad — the one muscle I had under some control. I have to unlearn and unlearn and unlearn. I think this is partially what happens during standing, too. I initially stand just with my quad and my tight ligaments.

Which brings me to the main mechanism of unlearning: Pilates on Tuesdays. I’ve been going to Absolute Center for a year, now. Thinking back to my first sessions, I have a lot to celebrate. But the biggest milestone is continuing to go. I am still learning and progressing and practicing every week. The result is a relationship with my trainer, Steph, that is rich with mutual respect and understanding. One milestone is trying hard, every time, to appreciate her ability and take advantage of that relationship.

This is a compilation my friend Theo made of some footage of me at Absolute.

And the next vide is fourteen minutes long, made by Steph, and does a good job of covering the range of exercises I do at pilates. What I hope you’ll appreciate from these videos is how carefully we work on alignment and on functional movement. I’ve said before that pilates is the anti-crossfit. The result is moves that don’t look obviously impressive and a distinct lack of grunting. But the result is also a safe, effective movement with a focus on activating the right muscles in the right sequence. And on isolating weakness. The goal is not completion of a certain number of repetitions. I recommend pilates to everyone.

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.)