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.

Every Saturday that I can, I go to the adaptive cycling center in Berkeley. My first visit there was after a difficult and complicated trip to Death Valley. My weekend in Death Valley — I was there to see the Superbloom — left me feeling restless and emotionally drained.  The rough terrain of the desert made venturing from the car impossible in most locations. We ended up driving from spot to spot and just… looking. This is not how I’m used to experiencing nature or national parks. We did two hikes. One was on a board walk. It was bumpy in the chair but manageable. The second was a mile into Golden Canyon. There was one section Ben had to carry me through, then carry the chair. I was slow and constantly dependent on help pushing. I was also given a huge amount of encouragement by my fellow tourists. Comments ranged from “you go girl” to “god bless you.” I realized, by the end of the weekend, how tiring it is to get so much attention. It was a constant reminder that I am different, that I don’t belong, and that I am doing something hard for me.

The following weekend, biking at the BORP cycling center was a complete contrast. The center has a mission to get everyone on a bike. Greg, the wonderful human who volunteers at BORP most days I’m there, embodies this mission perfectly. BORP has a vast, impressive, overwhelming army of bikes to chose from. The diversity of human-powered vehicles matches the diversity of individuals who come out to enjoy them. Though most of the bikes are designed for having one user and do not adjust readily, Greg tackles the problem of fitting each rider with enthusiasm and joy. I was there with Aaron, a good friend, and he was game. Given I didn’t know what my legs could do, we started by both trying a hand cycle. I’ve been using a stationary bike at home, so I knew I could spin pedals. I was both eager to test my legs and seriously afraid that even on flat ground and in the lowest gear, I wouldn’t have the strength to move myself forward. With Aaron’s help I got into a recumbent leg cycle and slowly, at about a walking pace, was able to bike around. Hills were a no-go, though. So Greg put two recumbent leg bikes together: Aaron was now my hill back-up, so off we went. (I made him promise not to pedal too much unless I was in trouble.) It’s hard to convey how wonderful it feels to move myself forward using just leg power. It was my first time doing so since the accident. The feeling was similar to watching my right leg move for the first time in the water. I felt so much closer to walking again. Since then I’ve been using a big red recumbent tandem and my bike rides now last two+ hours.

Here is a video Ben took of me from the back of the tandem. We biked all around the Berkeley marina yesterday.

[evp_embed_video url=”http://smallrestlesshuman.com/videos/BORP1.MOV” ratio=”1.8″ width=300 ]

At BORP no one thinks I’m special for wanting to ride a bike or be outside. I love being just one of the many different kinds of people who goes cycling there.

I’ve got a good amount of hardware in me now. You would think it would feel different: your back with five vertebrae fused together, pegs sticking every which way on the x-ray; your thumb with a plate as big as the bone. These films at the doctor’s look foreign but everything moves familiar.

The latest enhancement is my new set of braces. For practicing walking, my left leg needs the ankle stabilized. My right, which I still can’t lock at the knee, requires an exoskeleton-type contraption. It locks straight as I stand up and has a bar at the back of the knee I can hit to release the lock. This is my version of being upright, for now. I’m happy with how stable I feel with these on.

Somehow I got into a discussion with the orthotist about outfits and he gave me some advice on how to wear these with skirts. Their utility as fashion statements aside, I’m happy to have these replace the mess of ace bandages and knee braces I was using. Right now I can walk for about 40 minutes using the parallel bars at my house. Or 15 minutes with crutches. I am going to work to increase my endurance.

I want to drive — I miss it: the freedom to spontaneously, easily move over hundreds of miles to follow your needs and desires. The steps between me and driving are multiple. First, I need to learn how to take apart my wheelchair from the driver’s seat and bring it in, piece by piece, between me and the steering wheel. My old four-door sedan is probably the worse car possible for this procedure: it’s small, the doors are narrow, the wheelchair frame gets caught on me or the wheel. No matter how many times I tried with the guidance of my occupational therapist, I couldn’t do it on my own.

So, I decided I would sell my old car and get another. I did some research on features that can make the wheelchair process easier. I went to dealerships. I tried getting into different cars. It was probably one of the weirdest test drives the salespeople experienced. I figured it out: the process I liked best avoided the whole ‘taking wheelchair apart’ problem. I figured out I like hatchbacks: I could transfer from the chair into the trunk, then pull it up after me. First problem solved: both me and the wheelchair were in the car. But we were in the trunk. Now what? I found cars in which the back seats folded flat or could be taken out. I could then scoot all the way to the front seats. Next? I figured out that if the front seats could also lie flat, I was able to transfer to the front passenger seat, and then from the passenger seat to the driver’s seat.

The car in which all this is possible is the Honda Element. It also fulfills other key requirements: both Ben and I can sleep in it, the gas milage is reasonable, it’s not too tall, etc. Yesterday, finally, I bought a car. Ben drove me all the way to Bakersfield so I could get a good deal. After a four-hour process with too much haggling for my taste, we ate some celebratory sushi and drove home in the Element.

Second step: I have to get hand controls installed in the car. Finally, I have to re-learn how to drive using hand controls. But the path forward is now clear. I’m so excited this piece of the puzzle is in place. And I can’t wait to go camping.

This Saturday was my first visit to Absolute Center. I’ve been dissatisfied with my regular physical therapy for a while: two visits a week, forty-five minutes each. When I broke my thumb, I was prescribed that same amount of physical therapy. There is such a difference, though, between healing a broken bone and recovering from a spinal cord injury. Unfortunately, whoever makes the decisions about my care at my insurance company is not aware of the magnitude difference.

To supplement my PT regiment, I am working with a trainer who specializes in a pilates-based rehab. The pilates equipment, which all looks like torture devices, is incredibly good at targeting and isolating my areas of weakness. I know from climbing how easy it is to learn compensatory patterns of muscle activity. These hide your weakest links, allowing the imbalance to continue. As my muscles regain activity sequentially, I am learning bad habits that affect my posture and my gait. Right now I have a broad range of strengths in each leg. And I have a weak side and a strong side. What was interesting to note is my right leg, which is just starting to have activity, is better than my left at performing many of the exercises correctly. With my therapist we jokingly referred to my strong left leg as the “corrupt” one and the right as still “innocent.”

I can’t wait to go back for another intense three-hour session. One of my goals is to attend a session each week. Right now, the cost of the trainer and the issue of transportation are standing in my way. But I am working on addressing both.

Here is a video of me on the CoreAlign, finally using my weak glutes to push my legs apart instead of using my quads. Each leg is on a sliding platform; the platforms are connected by a spring.

[evp_embed_video url=”http://smallrestlesshuman.com/videos/ABC1.mp4″ ratio=”1.8″ width=250 ]

Yesterday was another milestone. Noticing these improvements is a big source of motivation for me, so I want to write this down. Yesterday I was finally able to swim on my front, using breaststroke. I did about 600 yards on my back (my usual) and then was able to do 400 more yards of breaststroke before the pool closed. I’m not fast… but I’m finally able to coordinate both my legs well enough to kick. I’ve been working every day with a theraband to strengthen my hip abductors: glutes and sartorius. This is the first instance in which my work is paying off.

My hip adductors started firing first — they are still much stronger than the abductors. But while my legs used to cross and tangle and sink when I kicked on my front, I am finally strong enough to do a slow and steady frog kick. My abductors are bringing my legs out and successfully countering the pull in. I am also feeling more stable side-to-side when I practice walking, which is the real goal of those exercises.

This is a video taken of me in January: I am in the pool for the first time since the accident and ecstatic about how much my legs can move in the water. But as you can tell, I wasn’t able to extend my right leg.

[evp_embed_video url=”http://smallrestlesshuman.com/videos/firstSwim.mov” ratio=”0.6″ width=400 muted=true]

Here is a video taken a few days ago. I’ve graduated from needing a trainer or a flotation device. Both legs are kicking much stronger.

[evp_embed_video url=”http://smallrestlesshuman.com/videos/aprilSwimming.mp4″ ratio=”1.8″ width=250 muted=”true”]

I was never a strong or enthusiastic swimmer. But the buoyancy of the water is magical feeling right now. And the resistance it provides is usually the perfect weight for training my fledgeling muscles.

Finally, here is a video of me swimming breaststroke for the first time.

[evp_embed_video url=”http://smallrestlesshuman.com/videos/breaststroke1.m4v” ratio=”0.6″ width=400 muted=true]