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.

But this does not solve the information problem.

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.

In my mind the way forward is always clear-cut. Not uncertain or inconvenient or imperfect. When I think about a time when I won’t be needing the wheelchair any more, I see myself just standing up one morning and walking away from my seat. Never needing it again. Perhaps it bursts into flames.

This is not how transitions happen in reality. In the real world I will be changing so slowly I’ll hardly notice. I’ll spend a little less time sitting down, every day. And being up will be unsteady and inconvenient and terrifying. I will need my braces for a while, yet. I will have to learn how to transport them around. I will have to buy a second walker for lab. It will be awkward to get everything into my car. I can’t wait until the braces come off to start walking. I can’t wait until crutches feel safe to start using them. If there is no uncertainty then you’ve missed the window for greatest growth. If I’m not scared of the next step it’s too late to take it.

My favorite part of weddings was always the dancing. This past weekend I went to one held on a “farm” near Carmel. I had my hesitations: what if the terrain is too rough? What shoes should I wear? Will my dress fit? The main reason for all these questions was my grand plan to forego the wheelchair and spend the day and a half in my walker and braces. Also, because this is vacation season and all hotels and b&bs nearby are incredibly expensive, we decided to sleep in the car. So, basically, we maximized the adventure potential of a Carmel wedding.

Somehow, we (Ben) packed my foam mattress, sleeping bags, recumbent bike, wheelchair, walker, leg braces and some clothing all into one car. (I now fully appreciate all toaster-shaped vehicles!) Saturday I shuffled through the windy, wooded paths to the ceremony, to cocktails, to dinner, to cake. It was wonderful. I was slow and awkward and always looking for a place to put down my drink… But again I noticed the difference in how people treated walker-Alina vs. wheelchair-Alina. And probably part of how people react to me is based on how I feel in those two modes.

In the evening, once the music started, I was suddenly dancing… Walker was pushed aside and I grabbed onto Ben’s shoulders. Every song was danced as a pseudo-slow-song but I didn’t mind. The other wedding-goers were pretty encouraging of my dancing.

I think I’ll try to do this more for parties and social gatherings. In a wheelchair I’m staring at people’s crotches when we talk. I’m large and it feels like the chair creates a physical barrier between me and people. I have to be careful or I run into feet or I get tripped over. The walker is a much more stealthy tool. Once I’m upright I can easily do the small amount of walking that’s required. I can stand with my drink and look into people’s faces. Or I can sit and tuck it out of the way. These small things make a big difference.

The triathlon was a good time. I really enjoyed the swim. It was different to go without the interruption of a pool lane ending. It was harder. Eventually I got into the rhythm, the hypnosis of repetitive action. The lake water was lovely that morning. I swam on my back and Ben swam beside me, acting as my sight. He would point and I would try to steer in the right direction. It wasn’t the most efficient system. But it worked. The half mile flew by.

After being carried out of the water like a wet, slimey princess (everyone cheered) I started the bike portion. I decided to leave the battery behind. This was my first time biking solo without the e-assist. I was the slowest cyclist by far… the nine miles took me nearly two hours. But I made it! I made it up rolling hills and took the flats at a decent pace. Ben ran (okay, mostly jogged) next to me during this leg. He had to push me up two short, steep hills. But that was what we expected from scoping out the course the day before. I am excited about how quickly I’m progressing with biking. These are real changes happening on the scale of weeks.

I wanted to, but couldn’t do the “run” portion. The trail had several steep section of gravel, which is definitely a no-go in a wheelchair. We were a team, so Ben ran that section for me. My next goal is to do a triathlon where I can participate in all three legs. There’s one in Oakland at the end of month….

After the tri the teams of “challenge” athletes bbq’ed together. I talked to Greg from BORP about getting a better bike. He was excited for me to use something light and more race-worthy. Since I’m weaning myself off the battery, it’s time to think about the next step. BORP has something I can borrow for the Oakland Tri. But I think it’s time for me to come to terms with the fact that I will likely be riding a recumbent for a significant time to come. So it is worth purchasing something. I can bike and swim for hours, forgetting I’m doing useful exercises. This is not the case for the resistance band workouts and other PT moves at home. I know a bike will be a great investment in my recovery. But at 3-4k.. oof. Recumbent bikes here and here for your browsing pleasure.  Just check out that German engineering…

I took another walk on Saturday. I wasn’t ready for it, but my chosen trail had some rolling hills. Tilden park was all golden light and dusty eucalyptus. I’m glad I’m returning to trails that go through woods. I’ve been missing moving through these landscapes.

What was new and started with my Stanford walk, but to a much less extent, is people constantly asking what happened. I got my first “What happened?” and it took me a full minute to figure out what he was asking. Somehow, when I’m in a wheelchair it means different, it means chronic, and it means don’t ask. But shuffling around in a walker I am suddenly just taking a break from normal function. I also get “What happened to your leg?” This is a hard question to field. I have to admit, a part of me is thrilled to hear it. I take it to mean I don’t look much worse than a girl in a cast. Granted, it doesn’t take much to fool the casual passer-by. They see my braced right leg and that’s it. But still, that bitter-sweet question… How to answer it? So far I’ve just been unloading all of it: rock climbing, spinal cord, wheelchair, etc etc. A part of me hates it. Why do so many of my interactions have to revolve around what is tragic? We have the same sad conversation over and over. I tell them about breaking my spine. They tell me their sad tale. Everyone has something to share. We make sympathy noises at each other.

On Saturday one man took off his dark glasses and cap after I was done my telling. He was missing a left eye (had a smiley sticker covering the smooth flesh-filled socket). He told me he was shot in the head. Had suffered traumatic brain damage. He had thought it was too much, too hard, that he wouldn’t get through it. But here he was… I don’t know how to take it. Am I fortunate that people want to show me their scars? Am I learning more about being human? Or I am just trapped in a role as a prompt? I don’t have a choice about all this sharing. Perhaps that’s what’s bothering me the most.