This Saturday and Sunday was another set of days worth celebrating. I’m starting to get into the rhythm of leaving the wheelchair at home each weekend. It feels less like a risk and more like a reasonable choice. (So maybe it’s time to think of a new challenge?) Ben and I headed up to Santa Rosa, spent all day outside, slept in the car in a beautiful place, and attended a BBQ festival. I also did my longest bike ride yet: 24 miles through wine country. Most of the ride smelled like fennel and there were many orderly rows of grapes. I loved it. My previous longest ride was 14 miles… so there were certainly portions towards the end when I was loving less, simply pedaling more. Ben, who was running with me for the ride, suffered to a greater degree. I failed to tell him in the beginning how long this ride was going to be… mostly because I decided in the middle. So now that I want bike rides in the twenty-mile range, we will have to come up with something other than the bike-run method. I’m still a very slow biker — too slow for Ben to also be biking and enjoy it. But I’m getting too strong for the bike-run. Would twenty miles of skateboarding be more enjoyable? Ben didn’t like my idea of him purchasing an arm bike for our rides.
It’s been difficult to write. Last month, my friend and housemate’s death in a rock climbing accident increased my feelings of vulnerability and isolation. I’m still struggling with putting the exact range and scope of emotions into words. Less than a week after the accident I was scheduled to leave for rehab at Neuroworks. I debated cancelling the trip. I felt guilty for the chance to escape our shared living space, her parent’s visit, and the business of death’s logistics. It felt inappropriate and easy. Like running away. But I went. And I’m glad I did.
My first visit to Neuroworx was in May. Going back five months later was a chance to do some direct comparisons, appreciate progress, and make new goals. I continue to be impressed with the therapists and the facility there. Somehow this visit was even better than my first. Like last time, I stayed for a week and did a morning and an afternoon session each day. I also took lunchtime group fitness classes and used some of their exercise equipment. So, all together, I did nothing but try hard and eat from 10 until 4 every day.
The differences I most appreciate are my huge gains in strength and endurance. Even that crazy schedule didn’t drain all my energy. I also spent most of the sessions upright or walking. My first visit I walked only on the first and the last day. I did a lot of exercises in upright kneel or otherwise supported. This visit I walked or stood every session. We focused on my balance and normalizing my gait. I practiced using crutches. In the summer, when I was planning this visit, I fantasized about walking at Neuroworx with crutches. But in my imagination, I no longer needed the right knee brace. I expected my right quad to be stronger by October. I don’t know why the healing process is so different and so slow on this side. I worry about never getting that function back.
On a more positive note, I’m really happy with how much my walking improved. Here is a video of me successfully standing up from seated. The maneuver includes swinging both crutches out in front of you at the same time, which feels a little bit like a trust fall. It looks a lot less dramatic than it felt those first few times:
And here is a video of me walking:
I’m really proud of my balance here. And though my steps are still small and slow, I know I’m still making serious progress.
Thanks so much to the High Fives Foundation for covering the the cost of the trip and the therapy. This was an amazing opportunity that let me focus on so much positive. If you want to see more photos and videos from therapy, check out the ‘Photos‘ section of this blog.
I hadn’t been dropped into water that cold before. I was instantly aware of every bit of exposed skin: hands, neck, face, ears. I could almost see them leak warmth into the blue. I guess my ankles are still not temperature sensitive enough to complain. I wonder about this sometimes… how much warmer I feel sleeping now that my feet don’t get cold. It seems like cheating.
This Saturday morning I spent three hours losing body heat in Donner Lake. I swam on my back for slightly more than two miles. The low point was Ben, who was helping me sight the way, getting too cold in his armless wetsuit. The combination of my slow pace and a leaky suit did him in. He flagged down the support boat, practically jumped out of the water, and got covered in towels. I had a kayaker stay with me for the rest of the swim. I kept motivated by identifying landmarks ahead and watching the shore until they slowly passed by. The high point was my kayaker suggesting I drink some water and eat. It was pure joy to hang onto his plastic side and squeeze caffeinated chocolate gel into my mouth. I picked up the pace after that. But I didn’t make it the full three miles. And I really don’t care.
When I hit the last goal I set for myself, I signalled and my kayaker called the boat. As soon as I stopped swimming my body began to loudly protest. I cramped up, everything hurt… I was pulled into the boat and spent thirty very uncomfortable minutes warming up. And then I was totally fine. This swim was my longest and my coldest by far… at elevation… and I’m proud of what I could do under the circumstances. I could have chosen to do the 1 mile swim. But that would have been boring — an assured success. This kind of failure is much more interesting.
I’m really happy I was part of the Donner Party Swim hosted by the No Limits Collaborative. Everyone barbecued on the beach afterward. I got my fill of meat and beer and ice cream calories. I enjoyed talking to the other lovely people who made it out for the event. I played my part in supporting No Limits and their mission of SCI advocacy.
That evening I tried to take a bike ride but made it just four miles before my legs gave up. So we went to Alibi Ale House, instead. Sunday’s ride was more successful. I did twelve hilly miles along the northwest shore of Lake Tahoe. We also took a walk. Overall, it was the kind of weekend that makes Monday morning hard and happy.
I’ve been on a hunt for new things to try. Because nothing I’ve done with my body in the past has prepared me for what could be good now. I know this is the perfect opportunity to explore and to keep my mind completely open.
So I have a list. I’m visiting an adaptive riding center. I started planning a trip to go scuba diving for the winter holiday break. I just tried archery. The free, adaptive class in Santa Cruz was wonderful. I think the best part was the instructor… the kind of sincere, gruff archery nerd who gave me as much shit as the next guy. I miss being treated equally by strangers. Mostly I have to fend off kindness. I’ve been thinking about how I tense up in the pool changing room, every time. Because I’m not accompanied by a caretaker all the nice ladies ask if I need help. Right now I have a routine and a bench a locker. I go through the steps with a deliberate, brisk air. But that still doesn’t do enough. I guess I don’t understand how to reconcile the two things: on one hand, people are kind and I should focus on their good intentions. On the other hand, it systematically undercuts my sense of independence and self-worth every time. Do I look so vulnerable? Do they need to remind me again that I’m different? Not to mention all the strange, funny behaviors: mothers grabbing their children so they don’t run near me; changers giving me all of the bench (no, you don’t need to move all your stuff across the locker room); women panicking when they come out of the handicap stall and I’m waiting. Today, a lady on crutches tried to open the door for me. We could barely get around each other. I think I must have said “I’m sorry” ten times. It doesn’t get easier.
The only solution I can think of is exposure. The teacher of adaptive archery had seen enough diversity to be able to treat me normally. How do we replicate this for everyone? For me, what helped a lot was Instagram. Don’t laugh. That site made it exquisitely easy for me to find a large number of people posting images of their adaptive lifestyles. I found SCI patients doing yoga and aerial silks and cross fit. I saw so many images of people in wheelchairs, or with prosthetics, or those developmentally different. Being exposed to these images, over and over, helped me accept myself. I got used to looking at my strange paralyzed toes because of social media. And if I can do that, the people in grocery stores and changing rooms can learn, too.
Above is the first picture of me in my wheelchair that I’ve publically shared. This is still hard for me (i cropped it).
I’m sad I missed some of the updates. These past weekends have included lots of good days. But work and distraction takes over the weekdays, and I haven’t been writing. I want to tell you about doing stairs. The small set, here and there. And three San Francisco flights. The steep, wooden kind with the wobbly banister. I love casting out in the braces and walker, leaving my wheelchair like leaving a boat behind in the ocean. I visited friends in Oakland with Fiona. The first time I met them, I was princess carried to the beautiful old factory space, mid-renovation. We sat and ate pancakes on stereo speakers in the middle of the gutted kitchen. Well, I was in the wheelchair, which was princess-carries up after me.
That was in March. In August I went up those stairs with just a banister and a shoulder. I walked inside their house and we ate dinner on a coffee table in the living room. Circling back helps me appreciate the changes. Their house gained most of a kitchen and a living room. I gained a lot more upright potential. We opened champagne to celebrate. I’m making progress. I’ll visit again in a couple of months. And then I’ll be without a right leg brace, perhaps. Or with crutches instead of walker. I couldn’t see the path to my current mobility back in March. So I have to accept not knowing now, either, but trust it exist and I will walk it.
I also started biking without the e-assist. No more cheating on the hills. I practiced a lot on my local rollers — retracing the path I had done assisted so I knew how much it would push me. My left thigh is starting to look familiar from all the work. I have the contours of a real quad and the soreness is back like an old habit. My right is still a stick, but moving! I talk to it a lot while biking. I send all my mental energy down to that side. I have to concentrate or it drops out of the equation and my pedaling is an unequal arc, a series of swipes by the left.
My proudest bike ride yet was 10 miles through the USCS campus. No e-assist! And the whole first half of the ride was uphill. Santa Cruz is substantially more hilly than my corner of the Bay Area. It took me three hours to complete the ride and I was hurting by the end. I’d love to come back to this loop when I’m stronger and blast up all the steep sections without hesitation or pushes.
I’ve been struggling with my career path, now that everything is different. Working in a lab while in a wheelchair has many problems. Space in research buildings is at a premium and many storage solutions involve building up. Also, I have to constantly negotiate narrow gaps between equipment, shelving and benches. I have to carry dangerous or delicate reagents from place to place… this now involves putting them in my lap, since I have to push my chair with both hands. Overall, it is a difficult work environment. Stanford has provided me with a great resource: their office of Accessible Education is paying for me to have a tech, part-time. This makes it possible for me to do experiments again. But is this a reasonable solution for the long term?
What makes all my decisions harder is the absolute absence of information on my recovery timeline or final prognosis. How much longer will I be in the chair? How long will I be on crutches? Will I ever stop needing the crutches? No one knows. Doctors can tell me so little. Every SCI patient is different, even when injured at the same level. I’ve talked to several people with L1 fractures and still haven’t met anyone with a recovery timeline that matches mine. So, how do I move forward? I wanted to be a postdoc before. But do I want to be a postdoc in a wheelchair? Do I want to be a postdoc on crutches? Will I need a tech for the rest of my career? Do other Universities have accessibility programs similar to Stanford? Would a professor even hire me given my limitations?
The problem besides the information problem is a motivation problem. I used to care deeply about peering into the unknown. Being on the cusp of knowledge and posing interesting questions. I am studying stem cells involved in reproduction. I am interested in why organisms age. But recently… my body has been a more immediate problem. Heading into lab to finish my thesis research seems like a distraction from more pressing questions. I want to figure out my new body and my new life. So why am I pipetting again?
This brings me to my final, most recent realization. It was difficult to admit to myself that this injury to my body has changed the focus of my mind. Perhaps not being willing to admit this in the first place is why it took me so long to figure out the next step. It turns out: I can do research on spinal cord injury and recovery. For my postdoc. It would be a slight change of field, but nothing dramatically different from what usually happens in academia. Watching Hugh Herr’s talk and seeing his focus on solving his problem reminded me of this option. This new target to my research seems to solve my motivation problem. I am definitely interested in pipetting again if it brings us closer (even just a little) to solving something so fundamental to who I am. I love the idea of making my research so… personal.
When I was in the rehab hospital what really helped me was listening to “The Martian” on audiobook. Mark Watney was learning how to grow potatoes on Mars and take a roadtrip across another planet. I was learning how to get dressed and get into my wheelchair. His attitude: the positive, can-do, trust in the process of science and human invention… it was infectious. It lifted me. I was a stranger in my own body, but I was also a scientist and an optimist. I tried to tackled each problem with his same mix of wonder and critical thinking. I believe so strongly in the human capacity for creativity and problem-solving. Here is the only photo I have from my hospital stay. It shows my setup of noise-cancelling headphones (playing audiobooks) and towels I used to shut out three roommates and a constant stream of nurses.
My period of rapid learning is over. But I still have a daily struggle in my brain that needs Mark Watney’s input. I don’t know what’s possible. I face new situations for my new body and I have to choose, each time, if I’m going to back down or if I’m going to try. This is when attitude is important. This is when I have to remain positive, again and again, and not get tired of problem-solving through the basics.
Right now I’m working on independence with biking. This means I need 1) a bike route that starts and ends at my house that is safe and not too difficult 2) a way to leave my wheelchair and get into my bike without either getting stolen in the interim 3) a way to come back and reset the system for a subsequent ride. So we’re trying out paths. We cleared a space in the garage for my bike and my chair to sit side by side. I plan on biking out with the garage door opener so I can close the door on my chair. I’m still not sure how to reset. My bike doesn’t go backwards. I’ll have to enter pointing the wrong way. Then still be able to reach my chair. And how do I flip the bike for the next ride? It’s a work in progress. I’m sure we’ll figure it out.
This week I heard a TED talk that lifted and carried me on a new wave of optimism. The line that spoke to me most strongly was: “a human being is never broken.” In his TED talk, Hugh Herr describes losing both his legs in a mountaineering accident. He goes on to invent a series of more and more sophisticated prosthetics that suit his needs and allow him to climb again and pursue other endeavours. He is currently a professor at the MIT Media Lab and head of the Biomechatronics group. He explained: “my body is not inadequate, technology is inadequate.” As scientist and inventors and engineers, we can solve this problem. I won’t do his work justice trying to describe it here.. You should check out his talk!
I was so inspired, I wrote Hugh Herr an e-mail. He answered back!
Two small victories today. First, this morning, I found my balance at the standing frame. I started with the belt supporting behind me and took my hands off. This felt great, so I dropped the belt. I was able to press my knees into the pad and balance. A big first. Before, when the hands came off, my right hip would rotate and I would twist out of upright. I think I’m finally getting the strength in my right glute and hamstring to balance out the left. I did some little weight shifts and wow, what a good workout for my brand new glutes. But still waiting on some real progress with locking my right knee…
Second, I finally went to the Stanford gym. A basement maze of free weights, rows of elliptical girls, and machine angles. I have been putting this off for months. Partially because the Stanford student show of youthful exuberance would probably make me sad. Partially because I was waiting on my right leg to learn how to track. I knew the gym had a NuStep, a recumbent step machine I used at Neuroworx. But no leg stabilizing attachments, which I needed in May. Today, I felt ready. I made my way to the gym, found my adaptive exercise machine, and strapped in my feet. I selected the lowest setting. It felt so much easier than before! Both in output wattage and endurance, I had a big improvements. I “walked” 1.5 miles in 56 minutes. I watched people squat, balance on one leg, make faces. I’ll start coming at the same time a couple of days a week and carve out a space for myself. People will get used to me and stop staring.
We packed for Tahoe: bike, walker, braces, wetsuit, everything for sleeping, everything for cooking… last minute I decided not to take the wheelchair. Because nobody likes packing. And maybe because I have a pretty high confidence in our combined powers: mine to be stubborn and take risks, Ben’s to carry me around. So, off we went.. my first weekend outing with the wheelchair waiting for me in my room.
I had found some “family friendly” bike paths (read: flat and separated from cars) and was determined to swim in a lake or two. And to walk. And to spend days outside, again.
Well, we magically found a perfect place to sleep in the Toaster (car), the biking did a complete and thorough job of tiring me out (twenty miles total this weekend!), and I miss the lovely woods there already. Swimming was trickier. I wanted to bike early each morning, before the heat set in. We started looking for a beach after lunch. There were the usual crowds and some access problems to figure out. On day one I ended up biking myself to the edge of the sand from the car, then Ben carried me into the water. On day two I walked as far as I could before the sand was too deep to continue. Then got carried into the lake. I miss my old bandit ways, of slipping into the water from whichever wild spot we found first. Instead we had to find parking and compete with families for access. I miss the option for peace and quiet. How do I handle limitations that always put me in the middle of the crowd?
Swimming in the middle of the day was also a mistake because it was too hot for me to wiggle into the wetsuit. I thought the water would be reasonable. I was wrong. I lasted just 10-15 minutes before shaking uncontrollably and aborting the swim. Otherwise, it felt wonderful to be in water without salt or chlorine. Next time I’ll have a better strategy for this. Swimming uninterrupted by walls and lanes is a goal right now.
I loved the trip: it also included some walking, some breweries, and the many moments that feel like adventure: problem-solving to follow laughter and inspiration. I can forget the negative aspects of my weaknesses when every challenge is welcome. It is easy to do in the setting of vacation and outdoor activity. It is hard to maintain on the day-to-day.
These days I wake up and I flex. On my command they tighten and slightly shift: my quads, my glutes, my hamstrings. On both sides. I won’t get tired of this feeling any time soon. I ask with my mind and my legs answer. What a wonderful feeling of power. Things have gotten so much easier. What used to be tens of small shifts with my arms to move the heavy logs below my waist are single fluid movements with my hands guiding (I’m still not very precise with my aim) or just barely assisting (my right leg still needs some help to lift itself). Legs are heavy and long. I still remember vividly (it was only a couple of months ago) the feeling of being anchored, being trapped in bed. I would lie down and be stuck in each position by my legs. To shift, I would have to sit up completely and use my arms to reposition my legs. I still have to do that some. But most of the time I can glide legs under the covers when rolling from one side to the other. This makes a big difference for how much of the night I spend sleeping. And I’ve been noticing big improvements there. The goal is to be back to needing just six-seven hours, just like the old days.