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I monitor my body closely. Listen for the plump in my right quad — a feeling that is finally starting to replace the absence that was there. I can finally move that kneecap. My right leg is feeling used after my walks in my new brace. Warm and flooded with awareness. I am also in the middle of a very clear trend towards reduced nerve pain. I have long stretches of the day pain-free. What a release. Pain used to make my mind so restless, my body so particular. I needed my legs propped a certain way constantly. I needed pillows and chairs and laps and massages and couches for stretches. Not that I don’t crave some of those still.. but I’m laboring less. I can forget it all for half a day and do an experiment, renovate a van. And I’m sleeping so much better, now, too. Waking up early and rested.

Like monitoring my body I monitor my mind. I realize a shift has happened. I’ve added more happiness to the day to day. I found some of the old joys in my new routine. I think I’m more settled into my limitations. Work, right now, is seeming like a game: how can I reach this given I can stand up with that? I have a whole building of puzzles to solve. But, more stark now with this daily shift is my attitude towards the future. The is a widening gap between how much I want each day and how much I want all of them. The rest of them. There is clearly a underlying existential crisis. One grounded in a simple stubborn inability to humbly accept what has happened. I still think the world owes me something. I’m waiting for this story to play out to my liking. Not miracles, but compromise. To combat this, I have been trying to cultivate gratitude. I believe that’s the missing piece. Gratitude being the opposite. The opposite of a chip on my shoulder. The opposite of needing something.

I started this post with a list of details I’m grateful for. Right now this list feels like a spring board to a much bigger list — the list of things I still want to change. So, I am far from being grateful for this life. And I have only a very limited notion of how to get there. Unless making just the first part of a list will work. Unless you can stumble into it by simply persisting.

Or maybe I have what is a real first step. This experience has taught me to be kinder and more accepting of the short-comings of others. I used to have a much lower tolerance for foibles. But my gratitude towards my fellow humans and my constant butting into my own limitations have eased my exacting approach to relationships. I hope. In truth this journal is often aspirational. I tend to write half a step ahead of myself. But only when confident I’ll get there. I wonder what that says about me. …Ok, enough rambling!

New hardware — walking edition

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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.

The Second Falliversary

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 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.

Two stories

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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.

Work and Play

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I won’t go into a pattern of apologizing at the beginning of each long-spaced entry for the hiatus. That gets pretty tiresome to read. Instead, I’ll get better at making time for writing instead of making time for my phone.

So, with that out of the way, I have a lot to catch up on. First, I found the perfect antidote to working long days. I’ve been focusing on finishing up my projects. So after 12 hours in lab I feel broken: my legs ache, there are tons of tiny muscle twitches, and goosebumps run up and down. I come home like that and can’t sleep and am too stiff to stand. So, first, I got a walker in lab and added a right knee block and now I’m standing throughout the day. That helps a huge amount. Second, I invested in a spin bike. Now I just hoist myself onto my extra padded seat and move my legs until they feel normal. It takes about 30 min. And it works so well! It was a perfect investment. I’m really happy I figured this out. I’m also proud of being able to get on the bike by myself. It isn’t easy when the seat is higher than your butt and you can only stand on one leg and need your arms to balance. My living room is 30% PT equipment by volume, now.

Second, I am also balancing all that work with a growing love and commitment to surfing. I borrowed a wave ski from High Fives and Ben bought his own board. We’re splashing around in the beginner spots, learning to read the water together. In some ways, I’m jealous watching him start: he can get a board for nothing at Costco and run holding it into the water. If it weren’t for the High Fives Foundation I wouldn’t be surfing. I wouldn’t have access to a board. I wouldn’t have the confidence to think that I could. I wouldn’t feel like I belong in the line up. I wouldn’t know how to ask Ben for the help I need. It takes a community to overcome all these barriers. It takes dedicated people and significant resources. Sometimes the enormous size of the task makes me feel overwhelmed. Sometimes it makes me feel grateful.

The magic of adaptive sports is both the difficulty and the feeling of surreptitious triumph when it works and the many pieces come together.

I just spent four days surfing in Ventura, again with the High Fives crew. I entered my first surf competition and ended up buying my own wave ski. I’m really happy that came together. The one I was borrowing was too big for me and well past retirement age. It was a good board for starting. But to get a new one was cost prohibitive and also, there is something like a two year wait list. But Tyler, who makes them, brought several for people to use during the competition. I tried a tiny teal one and loved it. So I bought it, used. It still needs some modification (seat is too large) but I’m so happy with the change. And Tyler is happy it finally found a home. I’m looking forward to more surfing. I wonder how far south I have to drive for the water to get noticeably warmer… Ventura felt perfect (68F). Pacifica right now is 56 degrees. Brrr.

More writing to come!

Teton Totality

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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

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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

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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

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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

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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]