I got a walker a few weeks ago. Crutches still feel too unstable but I wanted more practice moving my legs. And I was ready… forget what my Stanford physical therapist said. So I got one of those classic grey frames. And some pink tennis balls for the ends. I have spent the past two weeks shuffling around my house, practicing being the right height again. The kitchen counters suddenly made sense! The mirrors showed my face!
Yesterday, I took my first walk outside. I drove to Stanford and put on my braces and exited out of my car into the little grey frame. Not having a wheelchair anywhere in sight was novelty number one. I walked through a basketball court and then on a walkway past three science buildings. Then I walked back. It took a long time. I plan on doing it again very soon. I think this also means it is time to dismantle my walking frame in the living room. I’m going to turn the standing frame into a resistance band workout station.

Here is a video of me walking on campus. I still look down too much, to check the placement of my feet. Something to work on.

I’m fascinated by how my muscles are restarting. I was probably too distracted to notice it on my left leg while in the hospital. Or it happened too fast. The progress in my right leg, however, has been a march slow enough to observe in detail. I’ve been waiting on my lateral and medial quad. First I noticed that if I put my hand on the area, it would sometimes prompt them to fire during an exercise. But this initial activity would not be a real contraction. I couldn’t see anything move under my skin. It would be a fibrillation: a series of small twitches that only happened some of the time. Today I first noticed a real, orchestrated effort. A muscle bulged and shifted. I played with holding the contraction. It doesn’t fire every time I want to. I have to think about it in a tricky, indirect way: I can’t think too hard about it, I have to be slightly distracted. And when it does contract, I can hold it for about five seconds before it twitches and relaxes again. I played with my quad until I got it firing in a slightly more reliable way. And I was able to hold the contraction a bit longer. Visual feedback helps tremendously here. I’ve learned over the past six months to squint at my lower extremities like at a squishy puzzle.

My most scared moments are when I think I’ve hurt these parts of mine, which are still connected, but are not reliable reporters. Did I just sprain an ankle? Did I bang my foot too hard? It’s difficult to explain how I think about owning something that is me but so distant. I talk to my feet. “Come on, right foot!” I try to ignore them. The sensation there, most of the time, is like the pinpricks of when a body part falls asleep and then wakes up. I think of it as static. My toes are constantly buzzing with white noise. I am slowly getting sensation back, which means if I press on my toes I get a signal that is above this background.

I’ve been thinking about how lucky I am. There have been so many times when something goes wrong or weird and I just have to ask Ben to rescue me. I’m lucky that I’m small and light. And Ben is tall and in good shape. And he is willing. I get carried into bathrooms a lot. Usually women’s. This happens when no handicap bathrooms are in range. Or while biking. I am lucky that after my spinal cord injury I have regained the ability to pee — but this also means I have to be vigilant about timely bathroom breaks, because my body sometimes acts like it has just recently learned this whole bathroom thing. Which is true.
So, my situation has given me a good perspective on the recent controversy about who gets to enter which bathroom. The segregation makes no sense. It can separate caregiver and caretaker in so many key situation. People with disabilities are also targeted by these policies. Ben has to deal with the acute discomfort of helping me in a women’s restroom. I just have to laugh at the stares. But why do we have to put people in these situations? Let me assure you that no female has been harassed, humiliated, or violated by having an adult male in the same room where they use the restroom. My disability seems to disarm him as a threat. I think if we can change people’s perception in a single exception situation, we can change it always and make a new normal.
Ok, politics aside… I get carried by my friends and companions to kayaks and up stairs in San Francisco and into lakes for swimming. I have so much additional access thanks to a set of arbitrary circumstances. I do not want to take this for granted. So many other wheelchair users have those limits.

Today I drove to work. The feeling of freedom and strangeness hit when I was leaving the house by myself. I haven’t done that in six months. Today, I left on my own schedule. I transferred from my wheelchair into the trunk of my car, I pulled my wheelchair in after me, and then scooted to the front seat of my car. I drove to work, then exited out of the trunk. I must be a pretty interesting sight, with my system of slings and biners necessary to open and close the trunk from inside the car. But everything worked without a hitch. My brain is reeling at the possibilities, now, of places I can go and things I can do. A feeling we take for granted when solidly into our adulthood.

Yesterday I drove to the pool. Finally, most of the Alina-drives-a-car pieces are in place. I had no idea how complicated this was going to be. Like that hand controls cannot be installed without a prescription from a “driving occupational therapist,” who needs a prescription from my doctor, etc. That there are pages and pages of medical information I have to fill out for my driving OT and for the DMV. Is this feeling of being crazy what learning patience is like? Anyway, I’m really excited to hit this milestone. It is exactly what I need at the six-month mark. I know this makes little sense, but I thought I would be further along in my recovery by now. I decided this while at the hospital, when my doctor gave me a disabled parking placard that expired in six months. So I’ve been struggling lately with the slow slow nature of the changes.

But one important realization: now I have completed the three goals I set for myself at the beginning of April. In March I was feeling really negative about my rehab options and my ability to improve them. All that has changed. These were large goals and I am still shocked that I ticked all of them off. I have managed to find a rehab place in the Bay Area that I like (Absolute Center), I have secured a means of getting there (I will drive myself!) and I visited Neuroworx in Salt Lake City. Importantly, I have figured out the finances of doing all this… at least for the next six months. I applied to a ton of SCI grants in April.  So far, I have heard back from two. The Getting Back Up foundation provided me with funds for my first trip to Neuroworx and a month of rehab at Absolute. I am also really excited to be sponsored by the High Fives foundation. They are based out of Truckee and support athletes injured in mountain sports. Their very generous grant will pay for my second visit to Neuroworx (in the fall… I can’t wait!), five months of rehab at Absolute, and for a wetsuit! So really, all I have to worry about now is hard I work. It is a huge boost of confidence that I was able to identify my goals and, shortly after, meet them.

Lastly, I want to thank everyone who has donated to my recovery. I have used those funds towards my travel and lodging during my Neuroworx visit. And towards the $2k it cost to get my hand controls. Thank you!

One of the first things I did when I got home from the hospital was go to Home Depot and get lumber. I had a plan, from my PT, for how to build a standing frame. Ben and friends did most of the construction; I supervised. Standing feels amazing: my living room regains the proper, familiar perspective. It feels like a nice stretch on my hip flexors, which are usually in the shortened position of sitting. And important weight-bearing happens. I stand and listen to podcasts or read. We also have a game of chess on there. Here is a photo of me using it for the first time (in December). I’m holding onto door handles, which are screwed into the top platform. Note the cast and back brace. Good riddance!

In March I started practicing taking steps: I would hold onto the kitchen sink and a crutch and walk until the counter ran out. This was an unsatisfyingly short distance and I didn’t feel safe doing it without supervision. It also required somebody to bring the wheelchair to where I had finished walking so I could roll back to the start of the counter and repeat (turning around with one crutch and one kitchen counter is hard).

So, in March, Ben and I made plans to expand the standing frame into parallel bars. We took another trip to Home Depot. Soon I had a safe wooden corral with my wheelchair parked on one end and the standing frame at the other.  The standing frame is used as a turnaround point so I can make it back to the chair on my own.

Here is a video of me using it to walk for the first time. Watching it was my first view of how much my body has changed. I have lost so much muscle on my legs and butt. Sharing it makes me feel incredibly vulnerable. In my eyes I look weak and broken. Far from functional. Here I am using ace bandages on my ankles for dorsiflexion. There thing on my right leg is a borrowed post-op knee brace.

Here is a video taken this week. I think I can see some improvement. Some must be from better bracing: my orthotics are much more stable than what I had cobbled together in March. But I think you can also see more strength and stability through my hips. My gait is looking a little closer to functional movement. I’m wearing the same shirt by coincidence. And for making the most accurate, unbiased comparison, of course.

This is my living room, by the way. Props to my housemate, Maria, for letting me turn our shared living space into my personal jungle gym.

This entry is about what makes me tick. Or, put in a slightly less glib way, this is about motivation and meaning. The process for me goes like this: I come across half an idea or less. Something about it captures my imagination; it sticks in my head, somewhere in the region of peripheral vision, so that even when I’m looking at my lab notebook I can see it.

The idea rolls around inside, gathers details until it becomes a goal. Once I have goals I’m a much happier person. My new restrictions made all my old goals obsolete. I’ve added new ones, recently. The best sources of what is possible are other similarly-able individuals.

The SCI patients I met through Greg make rehab their full-time job.  I know I’m compromising recovery by going back to school right away. When I’m in lab I’m not standing or exercising, and I’m often in pain. I don’t have a choice about working. But I’m used to being a weekend warrior and getting all my training in after lab. So that will be my approach to serious rehab.

By talking to Arash and Theo, I reset my expectations for how much therapy I need and started plotting the supplemental treatment. I got inspired. The No Limits Collaborative, a nonprofit started by Arash, is putting on a swim in Donner Lake. My goal is to swim three miles. This is the perfect carrot to make all my pool laps more interesting and more meaningful. I can’t wait to take swimming outside and to be part of an event. Right now it takes me slightly more than an hour to swim a mile on my front. I can swim about twice as fast using backstroke. I’ll be ready by September, for sure. I can’t wait to see how fast I’ll be by then.

I’ll need to get a wetsuit to make swimming outside possible (SCI messes up thermoregulation — and I got cold easily even before the accident). A wetsuit will also help with flotation, which is important for me in water rougher than a pool’s.

My second goal is to do a triathalon. I won’t be running (I’ll be pushing myself in the wheelchair) but I plan on swimming and using a recumbent leg bike. I’ll need to swim for half a mile (easy!) bike for 12 miles (ok, that’s going to be the crux) and then wheel (wheelchair? roll? what is the correct verb here?) for 3 miles (also easy). I particularly like this goal because I would have never chosen to do a tri before my injury. I was a very weak swimmer and I would have been too embarrassed by my slow swim time. Now, I just don’t care. Plus, I feel much more confident in the water.

A large number of good things have happened to me since first coming to the adaptive cycling center in Berkeley. Many have been a direct consequence of visiting. First, Greg, one of the volunteers there, introduced me to several similarly young, active SCI patients. More on that later. Second, because I figured out I could ride a recumbent leg bike, I got one at home. Two of my friends, when I shared my BORP experience, volunteered their bike. I now ride twice a week in the neighborhoods around my house. Their amazing recumbent even has an electronic assist: a battery-charged motor that I can kick in when the hills come. Thanks, Matt and Marie-Eve, for loaning it to me!

I live on a saddle. So far, the steep slopes in every direction from my house have kept me from biking out the door. Instead, Ben and I have a routine: he bikes us to and from the flat, quiet neighborhoods where I train. While he bikes, I sit on the platform in the back, which also hold the battery pack. We get honked at. In my backpack is a set of pedals that strap to my feet. Once we reach my flat spot of choice, Ben attaches the pedals and carries me to the front seat.

Yesterday I swam and then biked. I thought I would be exhausted but, somehow, yesterday was my strongest ride yet. I was forcing Ben to jog to keep up with me for most of it. I wonder if I had another leap in strength. Or if swimming for an hour and a half somehow was a “warm-up” that primed my legs for better performance. It reminded me of something new I learned about my body at the Absolute Center: I need a huge number of repetitions to get better at an exercise. I’ll struggle at the first five to ten. That’s when my regular PT usually tells me to rest. But if I keep going, the exercise will start to get easier and easier. My muscles and my brain take a long time to re-learn the timing, the pattern, the necessary coordination to optimize the movement. By rep forty I’ve mastered it and then it’s like a switch and my legs turn off, completely done, by number fifty. So, can something similar be happening with swimming followed by biking? I’m going to experiment by switching the order.