This trip was overall a lot closer to the "vacations" I used to take: early mornings, packed schedule, a gradual buildup of exhaustion until the relief of your hard-earned rest day, and coming back your eyeballs brimming with new sights and beautiful pictures. I'm so happy I found a way to do all that again.
I’ve always had a pretty strong reaction to situations where everyone around me does the same thing and seems to be following a script. So I go a little crazy over the holidays. I don’t know why. It all feels very theatrical to me. So my plan for these end-of-December days was to go camping. And to introduce Ben to some Russian food. I wanted to escape a little and to unearth some of the traditions from my childhood. And to stay off Facebook. Some of this plan did not happen. We slept in a real bed every night, for example. But I did get more days outside, and on the water, and in the woods, and ate lots of good food.
I went rowing on a real, tiny, one-person water-piercing slip of a boat. It was early and on a day that felt closer to winter than pretty much any other California day. I scraped my windshield with a credit card and then learned how to row. It wasn’t easy — my knees hit my hands and there is a very narrow angle I have to have with my back in order for my legs to be strong enough to draw me in. But it was new. And it was bracing. The shape of oars and boats is beautiful. The water is brighter, more reflective, and more like metal when it’s cold.
I went climbing for the first time since my accident. The first training for adaptive climbing at Stanford went really well. Mark Wellman taught a mix of students and VA Recreational Therapists how to rig his equipment. With his pulleys, comfortable seats, and army of traxion devices, pretty much anyone can climb a rope. He demonstrated the equipment from most adaptive to least, and asked for a volunteer for each. I volunteered to demonstrate how somebody in a wheelchair can climb a wall with plastic holds. I wore my ankle brace on my left leg and decided just to let the right leg hang. It was hard… the old range of body positions is not available to me. But I got to the top… hopping my left leg from hold to hold and pulling hard with my arms. I’m not sure I’ll do this with any regularity. And it was surprisingly emotional to put on my harness. But I was surrounded by rec. therapists… it was pretty much the most supportive environment I could have chosen for my first climb. Everyone cheered and clapped and took digital media. And Mark was great. He even invited me up to Tahoe to go cross-country skiing.
I also did more bike rides — exploring on day trips into lovely rolling trails. And froze my hands and feet and ears. And practiced more SCUBA dives. And I started walking more on my hot pink crutches. Still just in the house. Still just with careful spotting. But now my hallway track is starting to feel short, so I’m thinking of going to a real track — that seems like a really great surface to fall on — and seeing how far I can get.
I want to end with a list.. not of resolutions but of things I haven’t figure out yet, which I want to work on. I hope this list stays interesting to me for some time to come.
-How to tell the people who care about me when I’m sad. And more generally, how to be emotionally vulnerable without feeling pitiful or broken.
-Shoes: how to find ones that I can fit on my paralyzed feet that also stay on and are light and I like how they look.
-How to interact with strangers who treat me like an object: a sad story to collect or a figure to place on a pedestal.
-How to balance striving and fantasizing about the future with happiness in the present.
-How to celebrate both my independence and the people who I rely on and ask for help.
-How to invite more people over and how to be more social outside my house.
This weekend I swallowed some pool water. Both through my nose and my mouth. It was for a good cause, though. I spent something like six hours in the pool over Saturday and Sunday, learning how to dive. I was never a water baby. I am one of the people who gets a strong and irrational need to head to the surface when water goes up my nose. So, diving scared me. But not recently. It's official: in January I'm going to Hawaii to finish the dive certification I started this weekend. I'll be diving for a week.
But first I have to learn how to take my mask off underwater. And how to take the oxygen-drip of the regulator out of my mouth. And how to breathe slowly and deeply through all this while wearing a weight belt and no flippers. I don't know why I feel claustrophobic under water. But I had to have some conversations with myself about this today. The day ended with practicing my favorite skill: finding the point of buoyancy. Once there is the right amount of air in your bladder-equipped diving backpack (called the BCD), you float in the water column. An inhale slowly lifts you a little higher. Emptying your lungs brings you back down. That was really fun.
I used to be incredibly hesitant to learn things that did not come easily to me. Why should I, since I had so many other things to chose from? My strength, now, is the new-found ability to struggle. I was not a natural and easy student. My instructor and I tried again and again. But this did not fill me with a burning sense of shame. This did not turn me away from diving. I have learned how to take all the difficulty in and to keep moving forward. And I'm proud of myself for this. This is a new kind of ability... it makes my horizons seem a bit more limitless. I am certainly less constrained than the old self, which knew only how to move through the smoothest channels.
I miss my Thanksgivings in the desert. The perfect pairing of body-destroying physical activity and an ambitious feast. I loved the challenge of it. I loved the perfection of making so much food and then eating it as the climbing trip progresses. Turkey sandwiches on the summit! I don’t even know how to make a turkey unless it’s in a pit in a campground surrounded by coals and tents and climbing gear. This year I didn’t make one. I also didn’t make a single side dish. I spent the holiday reliving all my memories from this time of year: the early trips to Joshua Tree, my last trip to Red Rocks. I miss my friends — too many of whom I see only rarely — and the single-minded rhythm of climbing trips. I also took a long, beautiful bike ride along the coast.
This year I learned how to take. I’ve always been the independent goal-setter and the stubborn wanderer. But this year I’ve needed a lot and have been given a lot. I learned how to talk down the inner voices of ego and pride. Accepting help is not easy for me… but I understand to accept is a gift to the person offering. I’ve spent so much time taking and asking — physically and financially. And when you’re in a wheelchair, you constantly attract helpful attention. I am working on building a thicker skin. So far, still, a single person asking me if I’m OK and if I need help while I’m going to my car will ruin my mood. I want to break that narrative.
So, to take charge of my role, to flip the tables, I signed up to volunteer at a church dinner for the poor and homeless. I helped and cleaned and tried to navigate the whole affair without awkwardness. I was asked only once if I wanted a plate — and then the person nearby said no, she’s a volunteer. I guess this is my way of proving to myself that yes, I still have a lot to give. I have a lot to be grateful for. And, in part, it is my response to the political climate right now.
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.