A small thing recently that made my day was trying a rowing machine at the Stanford gym and getting a good workout. This was a culmination of several small threads that all came together. First, I visited the Palo Alto VA to talk to a couple of people in the spinal cord injury unit. I learned about a climbing program they are starting for the veterans… and volunteered to help. I also learned about an ongoing clinical trial to reduce or reverse bone density loss in wheelchair users. The participants showed improvement with the use of a rowing machine and functional electrical stimulation on their legs. Rowing was the only exercise that had a positive effect — perhaps because the loads through the legs are so great. Biking, standing, etc do not do enough. Talking about the issue made me think hard about my own health. I think I’m safe… given how much walking I do. But learning about the trial made me interested in trying rowing.
The activation energy to do so was dramatically lowered at the Abilities Expo, a convention for vendors and groups to show off everything adaptive for the disability community. I went this past weekend and tried some new, highly-engineered crutches. I also talked to the Bay Area adaptive rowing club. They had a machine modified with a nice, cushioned wheelchair seat for people to try. That went really well! So I was ready for the next step.
The rowing machines at the Stanford gym have tiny sliding plastic seats. It felt a little bit like trying to hit a moving target. But I managed to get on, strap in my feet, and start rowing. It takes a huge amount of concentration right now to keep myself balanced and to keep control over my legs through the range of motion for the press. But it was a great exercise for arms, back, abs, and legs. I’m excited to add this to my PT rotation.
Hopefully I’ll have updates soon on Adaptive Climbing at Stanford. Mark Wellman is coming to teach a clinic. I’m looking forward to having some climbing in my life again. The current plan is to just belay… but I doubt that is going to be true for very long. I have a entire head full of named and unnamed doubts and hesitations about trying climbing again. We’ll see. I’ve already learned that post-injury I’m not very good at predicting the future.
Another positive development… revealed only by the recent cool weather of California “winter”: temperature sensation in my feet and ankles has gotten a lot better. I’m struggling to keep them warm, just like before the injury. Perhaps “positive” is not the right word. It was an interesting sense of invincibility while it lasted. I’m enjoying the novelty of the foot feeling, though. There are so many simple pleasures in life, like sitting in bed writing with an electric blanket heating your feet.
My fall-iversary came and went. I spent it with friends: drinking tea, baking scones (may I recommend the cheddar-apple variety?), and eating tacos in Oakland all while being the awkward pace-setter for our slow migration between events. My walking is getting considerably faster, though! Friends who only see you periodically are a great source of encouragement. I can’t take the same things for granted with such an audience. I got to show off my walking and the small movements in the right leg.
This is the time to take stock, I guess. It has been a year since my life was changed almost completely. I find it funny that Halloween marks the transition point.
This is the last picture I took before my accident.
I was in lab and decided to document the bottom half of my Wild Things costume. That day I drove to Yosemite and my fall was the following morning. I often looked at this photograph when I was in the hospital. The casual feat of strength and balance demonstrated — sitting on my desk and perching my feet on the back of the twirly chair — seemed impossible back then and far off just a few months ago. But I set it as an arbitrary goal.
So here is my best impression today.
I’m sitting in my wheelchair and the left leg is doing most of the work. This is as much as I can lift the right. But I’m happy to be here. And I’ll try again next Halloween.
This year has been a swing of ups and downs. In the beginning I was incredibly optimistic about how long change and recovery would take. That optimism kept me afloat during the hardest months: right after coming home from the hospital; after the surgeon re-broke my thumb and I was in a cast, again; after the fast changes stopped and there was still no movement in my right leg.
I’m glad I didn’t know, back then, how much more there was to endure. I’m much better at dealing with that reality now. So much of happiness and acceptance is habit. I can deal because of the changes that come with learning a new system. But I still don’t have my mind on board. Mentally, I haven’t made progress with accepting what happened. The adjustment feels entirely physical right now.
Writing about the physical aspects of recovery has been fun and forces me to list, admire, and appreciate all my happy moments. I struggle more with writing down the mental acrobatics I’ve been participating in, recently. When a simple update on biking led me towards thinking and rethinking definitions, I decided to open another text box and try to hash this out.
Though I have much to celebrate recently, I still struggle to appreciate what I have and what I can accomplish. Pushing my physical limits isn’t hard for me — but being happy is. From what I can tell, this involves striking the right balance between striving and succeeding. I want so much. This injury has taken away many options for me and I spend a lot of time wanting them back. This motivates me to try and to improve myself. I don’t know, but I suspect that without all my activity I would not be as independent and as functional as I am now. So, wanting is good. But. But it leaves me miserable any time there is a gap — a difference — between what I want and what I can get. Ultimately, I want to stop being dependent on the use of a wheelchair. And so I’m unhappy sitting in it. But without a measure of acceptance, I can’t enjoy the present. I also spend a lot of time disliking myself.
I’ve been thinking about how my own perception of my physical limitations are shaped by society and how, in turn, I’m shaping ideas on disability. The hugely diverse disability community has to fight a battle against stereotypes that dehumanize and isolate. I’ve felt their force. I’ve fallen under their influence. The message I hear, over and over, is: “You are so inspirational. You are so amazing. I am so motivated by you.” And this is in response to me doing the most simple things. Living. Challenging myself physically. Being outside. Going to work. And I catch myself falling into this role, fulfilling this expectation. As a disabled person you have to be uniformly positive, extraordinary, and a feel-good narrative. You can’t be funny (in a self-deprecating way), shy (desiring of your privacy and not willing to talk to strangers about your life), or cynical.
As a recently injured person who can’t help but compare before and after, I am also a reluctant member of the disability community and one that wants to pass — to be regarded as able-bodied and not as disabled. It must be difficult to be born into a community other members want to leave. I worry I am adding to the negative stigma associated with being a wheelchair user. I worry about contributing to the overwhelming message of ‘ableism.’ So, with all these forces pulling in different directions, how do I find balance?
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!