On being a cyborg

I recently listened to an interview with Eric Valor (EricValor.org), an ALS patient and self-proclaimed “world’s first fully functional cyborg.” Because of the progression of his disease, he is dependent on a ventilator and communicates with the world by controlling his computer using an eye tracker. Before his diagnosis, Eric was a surfer, snowboarder and self-taught IT guy. Since his paralysis, Eric has learned the necessary biology to become hugely active in the ALS community. He runs two non-profits, a patient advocacy group and message boards with the goal of evaluating ALS drugs and bringing new treatments into existence. In his interview, he talked about the freedom he experiences without his body. How in the past it was a distraction with its needs — but now he can focus. I’ve been thinking about his statements quite a bit. He has accomplished so much. And the internet is the perfect boundless realm for his active mind. It speaks to something fundamental about being human: our minds can be released, our intelligence and creativity isn’t tied to our senses or our physical experience.

If that seems obvious to you, then I would have disagreed with you before I heard of Eric. My experience with paralysis has been a push in the opposite direction from Eric’s. Eric and I sound pretty similar starting out: he wanted to be an astronaut, he was deeply passionate about surfing and lived near the ocean. We both had an identity intimately tied to our physicality. But he feels free from his body. And I feel closer to mine. I’ve been thinking more about it, I’ve been straining to listen to it’s first weak signals, and I’ve been more aware of it’s strengths and limitations than ever before. Pre-injury I set goals with my mind and pushed myself in that direction, my body whirring quietly in the background like a given. Things used to break and strain and injuries used to come as a surprise and a betrayal. But now I’ve learned so much about what is gone, what is still there, and what is emerging. I feel closer to it than ever before. It can’t shock me now — I see the changes coming.

The difference may be due to how much our bodies are affected. Perhaps with disability our minds are pushed closer and closer to our physical houses, until we can’t communicate any more and are set free. Just a theory. I’ve been thinking about bodies a lot.

I’m usually not motivated to write by anger and frustration. But I’ve had a small battle brewing that has been a sink of energy and a useless distraction. So I feel the urge to vent.

After my climbing accident I took three helicopter rides and was at three different hospitals. I had two surgeries. As a result, a year later, I still get a steady stream of medical bills.

After I came home, I careful read my insurance benefits so I would be prepared for what was to come. And then nothing that happened matched my expectations. My helicopter bills totalled a hundred thousand dollars. The helicopter companies tried to trick me into signing statements that I agree to pay the portion of the bill not covered by insurance. They claimed my signature was necessary for my insurance to start processing that claim. But I had already recieved confirmation from my insurance that they were working on it. Insurance paid them twenty thousand.

The Stanford Hospital bill was triple what I expected. I was terrified. It took two days of phone calls but I figured out that the Stanford billing department made a mistake and charged me for a single occupancy room. Which is thousands of dollars for my six day stay. Which is not covered by my insurance. And then a month later I got another bill from Stanford. Again, for that same hospitalization but a different amount. I also got billed twice, again two different amounts a couple of months apart, for my outpatient surgery.

Talking to the Stanford Hospital billing department and my insurance has been like deciphering the broken codes by which two enormous machines communicate. And when they make a mistake, I lose big sums of money. I just got a second bill from my rehab hospital. For the same stay I already paid for, but now billed at an out-of-network rate. I had to call about this, explain for an hour, have somebody “look into it.” Earlier this month I got another bill from Modesto, the first hospital I was flown to, for seven dollars. It all baffles me. I don’t understand how this system can be so opaque and so broken. Why do I get lists of billing codes in the mail and my total, instead of a document I can read and understand? I am lucky that I am stubborn and not easily scared by official looking documents. But not everyone knows to fight.

I worry that the process is cryptic and riddled with errors to prevent effective patient self-advocacy. And to increase the bottom line. Stanford made two mistakes with my case. They are also the third most most profitable hospital in the country. Conversely, there is just no incentive for hospitals and insurance companies to invest in making it better.

I wish I didn’t have to waste my time and energy on this. Thank you for listening to my rant.

In other news, I’m making lots of progress with crutches. More on that, and a video, later.

The Lagging Leg Chronicle

This is not a huge update… not a Hawaii-sized post… but it makes me happy in a wonderful, floating way. I’ve been worried about my right leg — the lagging leg — since I woke up from the surgery and noticed the asymmetry. While I could kick with my left leg before I left the hospital and could feel both legs equally, my right leg didn’t have any movement for months… no twitches, no response. In March last year a muscle in my quad started listening. But, still, I wasn’t able to move any part of my leg. I wasn’t able to hold the small contractions for very long and they couldn’t fight gravity. But: two months ago my right hip flexor started taking off in strength. I noticed a weekly difference in how high I could lift my knee. And now, just this week, I was finally able to do little kicks. I can sit and use my right quad to swing the lower part of my leg. Hooray! If this trend continues I will soon be able to lock off my right knee while walking and standing. I will no longer need the awkward heavy knee brace stuck in a straight-leg position. Transitions from using the chair to walking will be easy… will be instant. How crazy.. how incredibly slow and creeping this healing process has been. Every day I feel closer to my legs moving themselves. I am experimenting with how I shift positions and get dressed. Things feel so easy.

Hawaii Vacation Post

  The dive trip was a little bit of a risk: I wasn't loving pool SCUBA and I had no chance to try the ocean before we left. I also couldn't find a "handicap" diving instructor on Hawaii. So I passed the able-bodied, unmodified version of the certification's first part -- the pool sessions. Then we flew to Hawaii and in person, on our first day on the island, I finally convinced a dive company to teach me (I was armed with the standard referral letter, but telling people I was in a wheelchair over the phone still didn't go well.) Finally! Now all I had left was to pass the open water portion of the certification and learn to like it.   My first two dives were the next day. I wasn't prepared for how much the boat was rocking. Sitting on the edge of the rear platform, finally ready to roll in, I stared at the moving water and fought with the tank strapped to my back. I must have hesitated for only a few seconds.. but it felt like quite a while. Then I bit into the regulator and rolled.
  My first dives went ok. I quickly learned how to check that the system was perfect before I hit the water, because adjusting anything after was too hard. For four dives I had to demonstrate the required skills to my instructor. Taking off my mask and putting it on again under forty feet of water was my least favorite. I also had to struggle quite a bit to show that I could towe Ben, my dive buddy, back to the boat in a fake "tired/hurt diver" scenario. Since I was using my arms to swim, grabbing him in the choppy water and swimming on the surface for any length with one arm was... an interesting challenge.  But I did it! And I'm proud of myself both for trying (in the face of skeptical dive shops) and for succeeding. After I got my certification we did one more day of diving and then took a rest day. On that last day I finally got to experience the water outside my worries of tests and skills.. and it felt great. I was exhausted... on the last dive I couldn't even help haul myself out of water.
  On our rest day we drove around Big Island looking for and finding natural beauty. (The southern tip! Green Sand Beach!) We also visited some farmer's markets and coffee shops/plantations. (I love the coffee grown there!) The highlight was the Tropical Botanical Garden. I got a solid walk -- despite protesting arms -- through its winding paths. The new and fantastical shapes to the flowers and trees were really fun for me. I love immersing in a completely novel landscape.
  Then it was back to the water. I was eager to get to it -- a day of doing the tourist thing is usually enough for me. Our next three days of SCUBA went really well. I started feeling comfortable enough that the equipment and the technical aspects receded into the background and I could focus on the fish and the blue world I was finally able to explore. It felt so freeing: to wander, to follow strange creatures (in addition to the rainbow of fish, we saw turtles, manta rays, and even two sharks!), to get lost exploring. I haven't felt like that... like myself... since the accident. I didn't have to worry about stairs and curb cuts and the extent or perfection of the upcoming stretch of pavement. I just went where I wanted. SCUBA is my chance to exit a world that no longer feels built for me. Maybe I'm still in that painful adjustment period, but I'm so sensitive to those constant little differences on land. And to how wheelchairs are perceived. But there's no stigma attached to swimming with your arms. So underwater feels freeing. A blank slate. A level blue playing field.  
boat selfie
  I don't move like the other divers. But that doesn't matter. Under water, like on land, I mostly use my arms to get around. And while on land this causes me a lot of angst, it was unnoticeable while diving. To me this helps to narrow down the cause: it's not that I mind so much looking different, it's the difference in access. And the difference in other's perception. It is hard to convey how my interaction with strangers has changed. But that... that and all the new invisible fences is what I keep wanting to escape.    
This diving trip ended with a manta ray night dive. We were armed with flashlights and taught how to aim them so that plankton builds up over head... and so the manta rays don't bowl you over. The plankton attracts these alien beings and we swim with them. Their slow largeness was really fantastic to watch. They can weight up to a ton! Check out the video.  
  Then it was time for another rest (and decompression) day before flying out. We visited Volcanoes National Park (I walked through more jungle) and then drove to the top of Mauna Kea (dormant volcano ~14K feet above sea level) to see the observatories, watch the sunset, and catch the views. Seeing the snow after all the days of sun and sand and water was jarring. After sunset we went to a sky party (the name for when lots of telescopes are out for everyone to use) and got some of the best star gazing I've ever experienced. Watching nebulae and the molten ball of Venus from a telescope the size of a microwave at the top of Big Island was an experience I won't forget.

  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.

Lights in December

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.

Diving in

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.

The Thanksgiving post

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.

thanksgivingride2This 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 thanksgivingride1taking 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.

Another thing I can do…

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.

rowingThe 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.

The first fall-iversary

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.
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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.
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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.

 

What I’m thinking about as I bike…

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?