Category Archives: mental process

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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!

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.

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.