Chapter 13 – A lot of firsts and one final

One random day in the 4-west gym, my OT Janessa showed me some of the dexterity games they have for patients to play with. There was a whole cabinet filled with things ranging from standard board games, to children’s dexterity toys [like the ones in the waiting room of a pediatrician’s office, I fucking love those things], to specially built set ups for SCI/ TBI patients. One of the games that she showed me was just a plank of wood with holes drilled on one face, with small wooden pegs placed in half of them. The idea was simply to pick up the peg from the left and transfer it over to an open hole on the right… Well, really just any open hole, there was no specific direction. Part of it reminded me of that peg hopping “IQ test” games that I have permanently associated with Cracker Barrel. Given the plethora of white people in there, the name makes me giggle, though the general décor and name give me the skeptical hippo eyes waiting for the racism; “old south” is a theme deeply tied with racism that is hard to overlook.

Anyway, it must have been on a Friday because I remember being super excited going up to the gym over the weekend when there was no therapy going on and the gym was empty. My family came with me and helped grab everything from the cabinets… obviously. I don’t think any of us were really thinking I could do it yet but I had to try, it had been burning in my mind since I had seen it, like someone showing you a puzzle in passing… well, for me, at least. To pick small items up, quadriplegics can sometimes use what is called tenodesis, where you make use of the slight gripping motion that happens when you use wrist flexion. Completely relax your hand and lay it as if you are trying to touch your forearm, now, as much as possible, keep your hand relaxed but slowly pull your wrist back, notice the fingers slightly close. Basically, by moving my wrist up and down [I can only control one direction of that] I can get my hand to slightly close and open, and create a weak pinching motion. Using that tenodesis, I was able to pick up the pegs and place them in another hole fairly consistently. Unfortunately, I also have to deal with little spasms and twitches, which tend to just eject whatever I am holding from my hand from time to time. Despite all of the drops and all the times it would just slip through my fingers, I was just elated that my hands weren’t entirely useless. I wasn’t sure what I could actually accomplish with my new found skill, but whatever it was going to be would have to be quick because my arm would get burnt out really quickly. One other thing it sparked was a constant drive to work out my wrist extensor muscles to try to improve my tenodesis grip. As I lay in bed, I would just constantly flex my wrist and relax, over and over again until my arm was on fire.

Because I had a tube going through my throat for the better part of two months, it was unclear if I could still actually swallow foods and liquids without inhaling it or having it get stuck. Therefore, before they could clear me to go back to a normal diet [not “eating” via injections into a tube in your stomach] I had to pass a few tests, which to this day still give me anxiety, as if they are going to show up randomly and tell me I’m not allowed to eat or drink anymore.

On the day of the tests, I was taken down through the basement corridor that connected Craig hospital, the rehab hospital specializing in SCI and TBI, with the Swedish Medical Center, the acute care hospital next door, where all significant medical procedures were performed. Our little adventure that day ended in the radiology department. It might seem strange to go to radiology for tests for eating and drinking, but they involve swallowing a thick chalky substance that contains barium, which shows up as a bright spot in x-rays. This allows them to track it as you swallow and detect if there are any issues; for example, if you end up aspirating part of it rather than swallowing it. The flavor wasn’t particularly strong, nor was it particularly pleasant; to try to mask the flavor and texture it was mixed with peanut butter and put on saltines. Now, you have to remember that I haven’t had anything to drink in two months, so my mouth was aggressively dry, which is why I had been begging to chew on ice, even if I had to spit the water out after.

It felt like a set up for failure, “for this test, please eat these dry saltines with a mix of peanut butter and toothpaste on them. Remember, if you have trouble swallowing this glue, no eating or tasting for you!” It wasn’t the MOST difficult thing they could have given me to eat, like, tardigrades eat diatoms, single cell micro algae, which have a silica-based cell wall, which is like “if Doritos came individually packaged in glass” [Ze Frank]. However, tardigrade mouths have two stabby-bits made of aragonite [a common crystalline form of calcium carbonate CaCO3] called stylets, used to punch through that barrier. As I sat there attempting to chew it as much as humanly possible to give myself the best shot, I couldn’t decide if I was happy to be eating and tasting something or was personally offended by what was in my mouth. I eventually took a deep breath and went to swallow it, praying that it would go down the right tube. I ended up having to do some weird two-part swallow; it wasn’t like it got stuck in my throat, more like, I had to swallow twice to get the last bit that was halfway down, but importantly, all down the right tube. I was immediately worried that because there was a little glitch, I had failed the test; turns out they weren’t worried about it at all, and it honestly still happens to this day. I was not aware of this at the time and I wouldn’t find out the results of the test until later that day… the next day? Was it a year?

Finally, after what felt like weeks but was more likely only a day or two, my nurse came in to tell me the good news; I was finally cleared to eat and drink. One would think that they would start you on a bunch of restrictions but quite the opposite, they just opened the floodgates and let me have whatever I wanted. Oh, the possibilities! It had been literally months since I had tasted anything aside from during the swallow test, but I don’t know if edible glue and Barium really count. The closest I had gotten up to this point was being allowed to chew ice cubes, as long as I promised not to try to swallow any of the water, a request I had trouble complying with. Now I could have anything! I had been craving soda, which was slightly odd because I didn’t drink soda before the accident. I think it was the sugar, the intense flavor [soda is very rarely subtle with the flavor], and just the fact that it was a liquid. I had also been watching my sister and dad eat random take-out from all around Denver, as well as the food at Craig hospital, which was surprisingly good on most occasions. So, what did I choose as my first meal!? Fucking assorted fruit… Why? Why am I like this? A choice about as imaginative as my first words after not speaking for weeks. I think the fruit just seemed safe. I was also considering the logistics of eating whatever I chose. Someone else was going to have to feed me, so something like a burger seemed a bit audacious, both in terms of getting it in my face in the first place and also subsequently trying to swallow it while not inhaling it.

It took me a little while to work up to eating anything interesting. Even once I was confident in eating just about whatever, I was still hyper cognizant of the fact that someone else would be feeding me. It’s a whole dance to learn what size bites to give someone, how often, what angle to come in from, etc. Imagine feeding a much more opinionated and judgmental baby, who is appreciative, but also constantly perplexed that you can’t read their mind [minus the part about needing to feed me, that might be just an insultingly accurate self-description]. The fact that I never really liked eating in front of people, and now someone else had to be actively involved in the process made things that much more unpleasant, but it was so good to taste things again that I quickly got over it.

There was one day where my friend Jessica was visiting in the evening, she had come a few times and would normally read to me and keep me company. That day, I was up in my power chair and we were just hanging out in the living room area of my room and the hospital was serving pulled pork that night for dinner. She stayed and helped me eat, and by that, I mean she basically fed me. The only reason I remember that specific meal is because at some point, I ended up inhaling a piece of that pork. It wasn’t enough to choke me but it was definitely enough to make my body start trying to cough, only, I don’t have the muscles for that, so I just start mildly convulsing every few seconds. My eyes were watering and I was struggling to breathe, but only enough to start the anxiety, it wasn’t time to panic yet, I was getting enough oxygen. We tried the standard quad coughing, but even with someone basically punching me in the stomach I couldn’t get it to budge. Jessica looked fairly concerned by the whole ordeal so I was trying to laugh it off as much as possible. When that didn’t work, we talked to the nurse who then said they had to contact the respiratory staff to try to get it out. It took what felt like an hour for them to get there, but was probably only 5 – 10 mins. When they did get there, we basically just had to do the old suctioning trick, but this time through my nose; I have to say, it was super satisfying hearing and seeing it get sucked up out of my lungs. I definitely had some apprehension about eating after that but, ya know, there really isn’t much of another option, plus, I remember what it was like not eating.

My sister was really good at picking up on what I was trying to communicate when I wasn’t able to speak or just couldn’t because of the people in the room. From simple things, like my head itches or I’m cold, to more complicated things, like I don’t want visitors right now or I’m freaking out for no reason and just need assurance that things are going to be ok. Speaking of freaking out, when my sister had to leave for the first time, I completely lost it. My dad and sister had dropped everything and come to deal with the aftermath of my poor decision making; it was not the first time they had bailed me out. They had been there from the start and were constants through the experience, something that basically no longer existed in my life. So, when she had to leave for a while to take care of things in her life, I felt an avalanche of anxiety. My brain just couldn’t deal with the situation.

While I love my dad and could not be more appreciative for everything he has done, and continues to do, for me, he is not exactly the first person I would turn to for emotional support. Either of them leaving would have caused anxiety, but it really felt like she was holding everything together. Looking back, she definitely was the one running point on the vast majority of things but it was also definitely a case of wondering how you could possibly deal without something until it’s gone and you renormalize. I had done a fair amount of renormalization in the 5 years before my accident; I lost my mother to cancer, a good friend to complications during childbirth, and in a lesser way my friends and lifestyle in Japan to moving. Now it was time to renormalize to being paralyzed, a step that I think is vitally important to the mental health of those suffering significant injury or impairment; as determined through my case study, subject of one (me), extrapolated to larger populations using a novel application of arrogant white guy logic. Renormalizing in the spirit of The Black Knight from Monty Python after losing all limbs, “I’ll bite your legs off.”

In the end, I think it was really important to have that separation, that forced another level of independence. I’ve talked to other patients who had similar experiences; maybe not the panic attacks, but the benefit of forced independence. Craig hospital was the perfect setting for this whole process because even if you were alone, they had an amazing support system of therapists, nurses, CNAs, psychologists, etc. My sister leaving forced me to be more vocal and more specific with what I wanted and didn’t want, how I wanted it done, when I wanted it, etc.; a process I find particularly uncomfortable and unpleasant. Why can’t everyone just read my mind… but only when I’m not mentally tearing someone apart for absolutely no reason; or really because I am an ass hole and it honestly feels good sometimes, but only when they have no idea, I would never want them to hear or even think the things that my brain comes up with.

Each time a bit of my support system was removed, I learned to adapt and I picked up new skills for independent living. I recognize that my situation was relatively ideal for this process. When my sister left, my dad was there to help out with everything and I was in a fully supportive environment at Craig hospital. Also, every new step was rolled out gradually, giving me time to adapt ideal or nearly ideal strategies for dealing with things. I’m convinced that I could have coped with a more abrupt change and less of a support but I think the strategies I would have come up with to deal with everything would have been far less effective, less healthy, and less sustainable. It’s not too much unlike tardigrades; if you slowly make their environment less hospitable, and give them a chance to acclimatize, they seem to do pretty well, but if the change is too abrupt, the survival rate tends to plummet [this holds for a lot of organisms]. I think this is broadly applicable to life, there needs to be a balance between the support someone needs and a need for them to be able to develop coping mechanisms and figure things out independently. On one hand, if you hover over them, they may never learn the necessary skills until they find themselves in a situation where they have to rely on those skills, but now it’s too late. On the other hand, if they never get adequate support, they may have to adapt on the fly, increasing the chances of developing bad, unhealthy, or dangerous solutions for issues.

When it came to eating things that were more substantial than little finger foods and snacks, things didn’t look super promising. I could get my hand to my mouth with some difficulty but the idea of controlling the orientation of my hand to use a utensil or to control it enough to not stab myself in the face with said utensil seemed out of the question. However, as always, someone had thought of that… kinda. Someone had designed what looked like a small crane; it sat on 4 caster wheels and rolled in behind your wheelchair, like you were backing into a parking spot. The whole machine resembled a small version of one of those exercise machines where you are seated and pulling down on the two separate overhead handles. My OT Janessa would have me back into place and would then thread my arm through two loops hanging at the ends of a metal rod; one loop went around my wrist and the other around my forearm, just below the elbow. The center of the rod was attached to a thin metal cable that ran up overhead, along a series of pulleys that ended on a series of weights. The idea was to attach the appropriate amount of weight so that the cable pulls up to make your arm basically weightless. All someone would have to do is pull on the cable and move the frame to turn me into a sad marionette where all the strings have become detached from neglect, save for one arm; yet, still always smiling.

Anticipating my flawless performance, Janessa would tuck a whole ass bath towel in between my chin and neck brace; imagine the laziest towel cosplay possible. I was endlessly amused at the sheer number of times I would get food on the fork and up to my mouth, only to fall off as I open my mouth to put a now empty fork in my mouth. Being able to laugh at just how dumb I looked pouring food on myself and then mouthing an empty fork, or just failing at something in general, was endlessly useful in learning pretty much any new task; persistence was key, I think everyone has the ability to learn tasks that increase their independence, so much lies in not becoming discouraged or demoralized.

The set-up, and experience in general, was ultimately bittersweet. On one hand, I had managed to get food in my mouth by myself, albeit at a fairly low success rate, though critically not 0; that felt amazing. On the other hand, the thought of needing that thing every time I wanted to eat… well that fucking sucked; is it really any better than having to be fed? Also, it’s not like you were going to take that whole rig with you when you go out. Like, think about if you were just hanging out with friends and they want to go eat, not only do you have to check if its wheelchair accessible [something many businesses say yes to only to only be accessible by stairs], then find handicap parking with a loading zone and hope someone doesn’t block you in, then have them basically rearrange the floor plan by moving tables and customers, but then you have to have someone feed you because you are now a marionette without strings. Definitely doable but for someone who already found social situations painful, especially going out to eat, it’s not an entirely pleasant experience. In the end, it turned out to just be a training device to help until you get stronger, and I only had to, or got to use it a few times. No more eating as a marionette doll.

Moving away from eating, the therapeutic recreation department in Craig hospital is typically patients’ first introduction back into the hobbies and activities that they used to do and want to do again or just think look interesting now. They do everything from gardening and tie dye to taking patients scuba diving and flying in gliders… so a fairly narrow range. As part of the whole program, they schedule multiple “outings and field trips” each month going to parks, museums, sports events, and a wide variety of other public settings. These outings allow patients to venture out into the world and stumble through [figuratively, of course… Most of us aren’t walking or are always stumbling] the logistics of navigating spaces that were not necessarily designed to be accessible, but with a solid support system of Craig staff. For my first time leaving the hospital I chose to go on the outing to a nature reserve. The combination of getting to be in nature while getting further from people was an instant ‘yes’ from me.

On that day, after running through checks with my nurse for the day, we went out in the morning to the parking lot to load into one of the two special buses Craig uses for patient transport. I rolled my power wheelchair onto the loading ramp and nervously waited as it raised up the 3+ ft. to the floor of the van; I’m not sure what I was worried about in specific, maybe that my chair might randomly decide it wants to be 2 ft to the right, except there’s no ground there anymore? The anxiety was indeed irrational and I rolled on into the bus without issue, at which point my chair was secured in place with a series of hooks. There were only three of us in there, I was in the back, with two older guys seated in manual wheelchairs in front. We all ran through the typical questions “What happened to you? How long ago? How much longer do you have?” as if we were in prison. I remember one guy saying that he was just riding his bicycle when he randomly had a stroke causing him to crash into a wall… Not much you can do to avoid that one, eh? One other thing I do remember was when we were talking about some of the weird things that people will say to you and one of the guys chimed in, “mmmhm, whenever someone tells me, ‘Everything happens for a reason,’ I just tell them, ‘Yeah, the reason is, I’m stupid and make bad decisions.’” I don’t think it was an original thought, as I’ve heard it multiple times since, but it still resonated with me and made me laugh.

I was very conscious of the fact that I was in a power chair while they were in manual chairs; it’s not that they treated me any differently, I just think their age and injury levels meant they had more in common and I felt like the odd man out… What's new? The practical difference became very apparent when we arrived at the nature reserve. The vans were parked and we were all unloaded and instructed to follow a bike path down a hill, up some grass, and up to some picnic tables. At that point, I zoomed off at the chair's top speed of 7 mph, slowing to half that speed to rumble across the grass. After getting there I turned around to see the other guys slowly making their way down the path, slowing to damn near a crawl as they put everything they had into getting over the grass while not flipping over. It was the first time I had really thought, “yep, rather be in this power chair.”

After everyone made their way to the meeting spot, they told us we could stay there or go out on the multi-use path and explore for a while. I headed out with my dad, who was definitely not about to run alongside my chair as I zoomed off. This was my first time getting to just go full throttle without worrying about people popping out of a room or out from behind a corner. As a work around, I would just “sprint” to areas along the path where I could stay shaded from the sun and wait for my dad. It was my first prolonged experience outside and I was dangerously unaware of how quickly I would burn while basking in the sun when I decided to roll along with my dad and talk. Also, being early October in Colorado, it was the perfect temperature outside for me to do my weight shifts in the sun; because I wasn’t moving during the weight shift, I could get a bit cold and the sun felt like a warm towel, straight out of the dryer; I definitely picked up a bit of a sunburn, which added a nice stinging feeling to what little I could feel.

After my dad noticed I was slightly overcooked, we headed back to the meeting spot where they had a typical picnic lunch set up for everyone. As much as I remember from that day, there are only two foods I am beyond positive we had: green grapes and those little single serving chip bags. I’m sure I ate other things and there was nothing all that special about the chips or the grapes. It’s just that, until that point, my hands had been, for all intents and purposes, pretty useless. Aside from just barely being able to move the pegs in the game from therapy, my hands might as well have been straight off of a mannequin. That day, however, something inside pushed me to try to grab one of the grapes that was on my plate. Now, without any control of your hands or fingers, it doesn’t seem very possible to actively pick anything up. The thing is, if you never move your hand, it builds a sort of tension and generally wants to stay in the position it is in, which you can use to your advantage. It’s basically like your fingers are held in place with really weak springs, meaning if you wedge something in there in just the right place and it’s not too heavy, you can kind of pick it up. Add to that the weak tenodesis in my left hand that slightly increased the pinching pressure, and I was off to the races.

I don’t know if I can fully describe how elated I was when the grape seemed to be staying between my fingers as I brought it up to my face. I f-ing did it! It might have only been one little grape, but not only did I pick something up in a practical situation for the first time, it was the first time I had eaten without help. I say without help, but my dad had gotten the grapes, pulled them off the vine, put them on a plate, and held the plate in place as I fumbled about, trying to get the positioning just right. Still, you get what I mean. Accomplishing the task felt great in itself, but it’s what it represented that really excited me; it was the first glimpse of independent eating. Having someone feed you once might be nice, having them do it for every meal and every snack, fucking sucks. I was so ecstatic and enamored with my new talent that I was just eating grapes and chips with great disdain for my lack of appetite. My hand was simply saying, “Look, I just learned this fucking trick, so you are going to keep eating everything I put in your stupid face… got it? Now open wide, dummy…” and I gladly obliged each time.

Getting my first real taste of being away from the hospital highlighted the need for special transportation. Before we purchased my current van, we rented a van so we could go look at apartments while I was still in the hospital. We had to try to arrange housing before I got out of the hospital, as I definitely wouldn’t be making it up the stairs to my old 2nd/3rd story apartment. The van we rented certainly served its purpose but only barely. One of the biggest issues was that the entrance to the van was shorter than my height in the chair, which was almost a deal breaker, but I was able to tilt back far enough in my chair to just squeeze through. It definitely made getting in pretty sketchy because you have to tilt back while going up a ramp, which makes it feel like you are going to tip over backwards, and in a 350-lb power chair, that’s not ideal. Once inside, things weren’t drastically improved; not only was the roof low enough for my head to constantly skim the headliner, but once driving, it sounded like we were trying to cruise down the highway in a shitty washing machine trying to spin dry a metal chain. It’s not like these issues would stop me from going out but it definitely made being in the car an uncomfortable and stressful experience rather than providing an escape. That’s all to say, I really appreciated the ride in the van we purchased, which was actually appropriately sized.

Just after we got the van, we were scheduled to go on an outing to the mall the size of a small town that is just outside of Denver, to give patients a chance to experience a retail scenario before leaving the hospital. Not having to get loaded into the Craig bus with that fork lift and being able to just roll into a van and lock my chair in place, is just one little bit closer to normalcy; when it’s time to get out, instead of waiting for someone to unhook your chair and then waiting for your turn to get fork lifted out, you hit a little button that unlocks the chair and then you just roll down the ramp that extends from underneath the floor, like your own red carpet roll out each time. Also being able to go out in the new van definitely made the whole “trip to a mega-mall” thing exciting, even if it was just for the ride there and back. Also, any chance to escape the hospital for a while was nice; even though while I was in the hospital, it felt so comfortable and safe that I wasn’t necessarily super enthusiastic about leaving. Similar to waking up in a warm bed in winter, you don’t want to leave, knowing nothing is going to feel as comfortable, but the world is home to a lot of adventures well worth the initial discomfort.

For note, this particular adventure was relatively uneventful. Aside from the novelty of the rides to and from mall in the new van, I really only remember playing with new phones, eating Panda Express, and being confused how a Target could possibly be as big as the one in the mall, it seemed large even for a super target, made to seem even bigger by the fact that it was in the mall? Attached to the mall? The way it was set up made it seem like it was basically three normal targets, slapped together, with the walls removed. My dad, who is Japanese and still not used to things on the American scale for sizes and portions, was even more entertained and perplexed by it than I was, and kept laughing and muttering his go to phrase: “It’s too much,” and he wasn’t wrong.

The progress of “recovery” is not always linear, and there are setbacks at every step. I think the general timeline people are given after a spinal cord injury is that you see rapid recovery of abilities and sensations in the first two weeks and then slower progress over the next two years. Obviously, there is no set timeline and everyone’s recovery is going to be different, sometimes quite dramatically, so you don’t want to set expectations based on that timeline but it’s a good reference.

In retrospect it seems odd but there was a distinct moment when I realized I would probably never walk again. I was in my room, in between the bed and the living room, getting ready to go to my classes and therapies for the day when my breathing became heavier and it felt as if my hair became weightless. There was no conscious logical progression of thoughts that had led me there; I was having a physiological response to a thought or idea which had yet to sprout in my conscious mind. The roots of that realization had been forming for weeks and I had certainly been asking the question from the moment I broke my neck, but there was a deep internal realization in that moment that I was only made consciously aware of after my body had ramped up the alarms. It all hit me at once and I was crying before I knew why and well before I was able to explain to everyone else why I had started breaking down out of nowhere. They ended up canceling everything on my schedule for the morning and just let me try to recollect myself and start to unwrap the realization I just had.

It's not like I decided that I would give up on walking or “recovering,” whatever that actually means, it was just a sudden acceptance of the actual probabilities. I knew there was still a chance, but in an instant, it had become so distant it was almost unrecognizable. It felt like playing the lottery when the Powerball reaches ridiculous numbers; I mean, I know I’m not going to win but the rewards are so high, of course I’m going to play. Looking back, I always wonder if the blind determination that some others are able to maintain might somehow increase the chances of regaining function. The brain is a wildly complex control system that is far from being understood, and I wouldn’t rule out the possibility that constant focus on some function or sensation may preferentially stimulate the reconnection of those pathways. It would seem counter to PMR [preferential motor reinnervation], a phenomenon where a regenerating axon in the peripheral nervous system tends to reinnervate motor pathways rather than somatosensory pathways; the body wants to function more than feel?

Maybe I am hyper focused on what I can feel, so I have regained a fair amount of sensation, albeit mostly pain and discomfort, just in new areas; or maybe am I hyper aware of what I can feel because that is all that came back? Or maybe I am a bit moron and the two are entirely unrelated? In any case, that determination and unrelenting faith can become dangerous when things don’t work out the way you hope. The general theme of messages after you get injured is “get well soon” or “you can beat this,” well, what happens when some of us don’t “get well” or “beat it”? The theme switches to one of inspiration; everything you are able to do becomes impressive and inspiring, regardless of the task. Some people love it and will show off every new trick with pride, others just want everyone to fuck off and think of it as no big deal. I, personally, lie somewhere in the middle, slightly favoring the fuck off mentality; however, I do enjoy a bit of praise for learning new tricks, a little pat on the head and a treat…

Over time, I would come to find out that walking barely even makes the wish list and only falls further down that list the longer you have been paralyzed. As I have mentioned, most people just want to be a little less paralyzed. I don’t need to be Usain Bolt, I don’t even need to be able to stand, I’ll take just having a broken back instead of a broken neck; or even just a slightly less broken neck. From talking with other people, this seems to be a fairly consistent theme in the wheelchair community.