Tag Archives: spinal cord injury

The Second Falliversary

 The two year anniversary (falliversary) just passed. It was... less emotional than last year. It was a week to think carefully about goals and expectations. Due to my habit of journaling and taking photos I was able to remember last year. And last year I was just starting to see my right leg move. But I was also so much less mobile, so much less balanced. Last year I started the tradition of recreating the last photo I took before my fall. From my wheelchair I positioned my legs on the back of a twirly chair and felt hugely accomplished because my right leg was strong enough to stay in position crossed over the left and the left was strong enough to hold both up. This year I got closer: I was able to hoist myself to the edge of my desk and sit on that with my legs up. This was unthinkable a year ago. So in making the comparison, I was happy to identify this progress. I captured the subtle changes that happen so slowly I had forgotten how difficult it used to be to leave the chair. But my right quad, the more obvious and more essential piece, has made remarkably little progress. I am still unable to put my weight on it. I can only do the same tiny kicks from January last year. Maybe an inch higher. Maybe two. 

A year ago, when my quad first started showing contractions, I celebrated and envisioned walking with just two ankle braces in a year. I never excepted so little change. This muscle has been the most unresponsive to everything I do. And there's no functional walking without quads. On my right side my hip flexor, my glute, and my ham string have progressed noticeably. But gaining just an inch of kick height? What does that mean for future walking? How long will I have to wait until it can hold my weight without the knee buckling? Maybe forever. Maybe the data points make a line that never crosses the required strength threshold. 

I got through many of the early days of my injury by imagining my recovered body. By focusing on my progress and on the temporary nature of my weakness. How do I deal with the reality, now that I can see I was too optimistic? I guess, in one way, the optimism has served its purpose. It got me through those first months, the first year... and now I have many more tools, other than wishful thinking, to keep me going. I learned this new body and changed tremendously. And now my new body and my new mind can keep going, progress in recovery or not.  

Anniversaries now serve as a reminder of the old goals I haven't reached.  A conversation with the old optimism. They should be good for something other than that. I don't want Halloween to feel so hopeless. Hopeless but resilient, I guess. I am more durable than I imaged two years ago. Right after my fall it felt impossibly hard to be injured for this long. It felt brutally unbearable to use a wheelchair for two years. But. Here I am. Relatively happy, every day. Still missing some of the highs I used to feel, more routinely. But, overall, myself. 

So, what's the lesson? Be as ambitious as you need. You can't accurately imagine where you will end up with recovery. So use your optimism and your imagination to see yourself as you want, in a year. In two years. Because you need that vision to keep going during the dark times. In the beginning, in the hardest moments, you also can't accurately imagine how tough you are. How you will endure. Exactly how you will get better is unclear. But healing is so subtle and so complicated. You can't understand it. Put it in the simple terms that make sense for you now, and keep going.

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.