Kenji Kanagawa Kenji Kanagawa

Chapter 12 – Typical therapy sessions

After a few weeks at Craig Hospital, the “discount waterboarding” from the ICU had become disturbingly commonplace. I no longer had a sense of dread before it happened and just thought of it as the easiest way to clear my lungs. It’s not like it was pleasant, it was just effective and I had managed to learn to take slow deliberate breaths while they were suctioning things out. Being able to tolerate the suctioning meant that they were typically able to do a more thorough job, meaning I probably had to have my lungs suctioned fewer times. At some point, it was time for my sister and dad to learn to do it. I think my dad had done it before as a doctor in Japan, which was quite a while ago, but I didn’t have any worry about his abilities. My sister is also a doctor but had never performed that procedure before and her apprehension at doing it matched my own; it’s not that she was a bad doctor, just that her doctorate in Japanese history just wasn’t likely to be super useful at this particular time.

 

In any case, in order to be cleared to do that procedure, they would have to take a specific class at the hospital; my dad, my sister, and Tyler went to get certified and cleared. In that class, they learned how to operate with one hand designated as “dirty,” with the other hand as “clean.” This is because they were going to be snaking a catheter into my lungs through the tracheostomy and the last thing you want is to make things worse by using the catheter as a germ and bacteria delivery system. The “dirty” hand could touch the packaging, tray, the trach, etc., while the clean hand operated the catheter. Each time, a catheter would get attached to the vacuum line on the wall through the catch can, removed from the packaging, and dipped in sterile water before being inserted into my trach. The catheter would be pushed in until they met resistance, hopefully at the bottom of my lungs, and they would cover a valve with their thumb which activates the vacuum suctioning.

 

Over time, it was happening so regularly that I started to realize that, as unpleasant as the experience was, it was not only tolerable, but if I relaxed enough, I was able to breathe. Mmmm, ok, “breathe” might be an overstatement because it definitely wasn’t sustainable but it was good enough to provide a bit more time for the person doing the procedure to really do a thorough job. That meant I had to have them do it slightly less often, which is great for everyone. As I sit here and try to think of some frame of reference for the experience, the only thing that comes to mind is that it might feel similar to having someone tape your mouth and one nostril shut, making you cry uncontrollably, then asking you to breathe through that one snot filled nostril… while someone suctions air out of your lungs? Fun fact, most of what is coming out your nose when you cry is actually tears flowing in through the lacrimal ducts on the lower eyelid; you are basically just crying out your nose… slightly more interesting, slightly less gross.

 

In terms of actual therapies, the FES [functional electrical stimulation] bike therapy was probably the least taxing therapy in the regiment and always made me giggle. For the FES bikes, I would head down to the PEAK center, which was a gym designed specifically for spinal cord injury (SCI) and traumatic brain injury (TBI) patients and was filled with all sorts of specialized equipment, including some really high-tech machines. At the far end of the gym, facing a wall between two giant two story windows, were a set of what looked like stationary recumbent bicycles that someone had forgotten to install a place to sit. However, before you could pull up to the bikes, there was a bit of prep work that needed to be done; as with most things as a new quadriplegic, this meant prep work for others to do while you watch. To get ready for the bikes, the whole electrical stimulation part of Functional Electrical Stimulation, needed to be set up. For this, one or two therapists would stick credit card size gel pads with electrical leads to your calves, thighs, and butt after using a washcloth to clean the skin, making sure the pads stuck well. After the pads are attached, you roll up to the bike and position your chair in just the right place, because your feet get strapped to the pedals, it’s important to be centered and at the right distance or your legs start doing some funky things. Imagine clipping your feet to your bike pedals but then having your seat off to the side and too close to the pedals, oh but the pedals are pushing your legs. Once you are in position, your feet get strapped to the pedals, as mentioned, and those electrical leads get hooked up to their corresponding wires going into the FES bike.

 

The idea with the FES bike, if you were wondering, is to send electrical signals to specific muscle groups through those gel pads, in a timing pattern that corresponds to pedaling a bicycle. The bike controls the speed of the pedals and the corresponding electrical stimulation pattern, and shows an animation of a guy on a bike that corresponds to what your legs are doing, or, more accurately what is being done to your legs. The level of electrical stimulation was adjustable, to where you could have it barely tickle the muscles while the machine did all of the pedaling or you could ramp up the power and really make those muscles contract, which meant your legs were actually helping pedal. There was a constant read out on the screen telling you how much work it was doing and how much you are “doing.”

 

You are definitely supposed to think about trying to pedal, but it’s also difficult to not just space out, start checking your phone, or just start watching TV. It’s difficult, for me at least, to continuously concentrate on doing something that feels like it’s having no effect. How long could you sit and seriously concentrate on flapping your wings, just watching an animation of someone with wings? That’s kinda how it felt; I couldn’t feel my legs aside from a dull tingle and there was no change whether I was trying or not, making sustained effort really difficult. I tried to put in good effort most of the time and felt really guilty when I didn’t. I’m not a big fan of doing unproven things that “might help,” which is kinda how I view religion now that I think about it. That’s not to say that I didn’t do things that would fit that description, I definitely did, I just… had my own particular brand of irrationality? 

 

If someone were to randomly visit during the FES bike therapy, they might think, “holy shit, you can move your legs!?” and it is certainly the most visually impressive therapy but actually represents the least amount of progress and effort, in my experience. It seems that it is often the least impressive looking things that represented the biggest marks of success during my stay in the hospital. I think it was the idea of trying really hard, mentally, to make something physical happen that was already happening that made me giggle. To be clear, aside from anything to do with moving your legs again, there is a variety of possible health benefits to FES therapy.

 

One of the massive benefits of being at one of the top rehab hospitals in the country is that they had all the newest toys to play with, including an entire suite of fancy machines from Switzerland. These included treadmills with exoskeleton legs to put patients through the motion of walking; treadmills with digital displays, force sensors, and image projection to help patients refine their gait; robotic arms that attach to the patient and allow for interactive games to be played with different amounts of assistance or resistance; and a harness which attaches to an overhead track and allows patients to walk with varying amounts of weight through their legs. In combination with the other brand’s machines, there were probably 15-20 different innovative therapies based around these larger pieces of equipment. I make this distinction because these larger machines are typically prohibitively expensive for hospitals and rehab facilities to use on a small number of patients. I didn’t use the vast majority of the machines but each new machine was just waiting to make the most of any function I might regain. I didn’t really have any sense of how much of a privilege it was to have access to all of these machines at the time. Everything could generally be replicated without the machines but it would all be far less efficient and less precise.

 

I wasted hours of therapy time staring at the machines and trying to dissect all of the engineering choices they had made; why did they need a cam gear there? So, what happens if that lever gets activated? Is there some external input which affects the way the system responds? Tell. Me. EVERYTHING!!! I’m sure my therapists were just sitting there thinking, “Dude, I just use the machines, I didn’t fucking design them. Chill.” Even though they were always nice, every now and then someone would indulge me and I’d get to ask all the questions that came to mind. The answers weren’t really the goal, per se, rather, they stood as indicators of my understanding of a concept. For example, with the functional electrical stimulation, the specific placement of the electrodes and the specific frequency, pulse width, and amplitude of the stimulation, all required a solid understanding of electricity and magnetism, as well as anatomy… or more likely, they pointed to gaps in my understanding of how things work in the real word. In physics, we tend to idealize things to make calculations simpler; the standard adage is that if you ask a physicist what shape a cow is, they will quickly tell you they are approximately spherical.

 

The machine I ended up using the most was one that attached an exoskeleton arm to mine, which allowed for different amounts of assistance or resistance to different motions. The machine incorporates the 3D position of the arm into computer games displayed on a monitor in front of you, and helps guide you through different functional motions and strengthen your arm in a targeted but progressive manner. The games weren’t exactly AAA titles, and kinda looked like a game designer's first crack at creating a game. There was a bootleg version of Mario Kart, where you pushed your arm forward to accelerate, pull back to break, and move left and right to steer. Sounds easy enough, but holding your arm in the air feels like holding a bucket of water at the end of your outstretched arm; the burn and exhaustion makes fine motor control much more difficult. Each game targeted a different functional movement and combined, they increased strength, stability, and range of motion. Most of the time I was just imagining using it to control a robot arm, something akin to the da Vinci Surgical System. 

 

Some of the machines in the PEAK Center:

 

Ekso – A mobile exoskeleton that helps patients who have complete paralysis of their legs and trunk, stand and walk over the ground.

 

ZeroG – Provides an overhead support system to give patients a variable amount of support depending on their level of injury or gait impairment, which helps maximize recovery by allowing for a wide range of supported positions. Very close to being a marionette.

 

Indego Exoskeleton – A powered “lower limb orthosis” that helps people with impaired mobility, stand and walk. Basically, robot legs.

 

Lokomat – A robotic locomotor training system that uses a bodyweight-supported harness system over a treadmill to help people with little leg movement achieve a walking motion.

 

WAVE Whole-body Advanced Vibration Exercise – Increases muscle activation by stimulating the tonic vibratory reflex to improve strength and function of the limbs and trunk.

 

RT600 FES Elliptical Trainer – Stimulates up to 10 muscle groups and helps decrease muscle atrophy while increasing muscle activity in the lower extremities.

 

HydroWorx 12000 pool – An underwater treadmill, where the floor started at ground level, allowing a wheelchair to roll in. The floor would then lower, submerging the whole space in water.

 

I think the biggest non-medical sense of relief I had was being in the pool, though I only used the fairly standard small pool (maybe 10 m?), not the Rolls-Royce of pools, the HydroWorx 1200. I had several sessions tentatively scheduled for the regular pool and was looking forward to them. The thing is, one requirement to get into the pool is that you haven’t shit yourself in the week prior to getting in… fair enough. Let’s just say that those tentative sessions kept getting pushed back. Finally, when I cleared that basic protocol, I was ready to go swimming. I didn’t have my swim trunks with me in the hospital so my nurse or CNA grabbed a pair of scrubs and just cut them into shorts. Despite going to the pool, I was still wearing long compression socks and a binder, which is just a wide elastic band around your waist, think ultra-diet corset, it was quite the look.

 

After transferring into bed so they could change my clothes, I was hoisted back into my chair and sent down to the pool. When I got there, they had me position my chair just outside of the pool next to a special lift. Once they had the sling underneath me, I was craned up into the air, swung over the pool, and slowly lowered into the water. To make sure I didn’t just sink to the bottom and drown, they put what was basically just a foam square with a hole for my neck on me and threaded a pool noodle behind my back and up through my arms. With a bit of support from   who teaches scuba diving, I floated around on my back and enjoyed my new found range of motion; it had been a long time since I was able to voluntarily reach above my shoulder level, much less straight overhead. At one point, she strapped paddles to my hands which let me drift around the pool with a bit more intention. I guess it was the first time since my accident that I was able to easily move myself around, no wheelchair, no therapist, and no painful straining. Add in the fact that the warm water did wonders to relax all of the muscles in my neck and shoulders that had essentially become permanently tense, it was fantastic. Aside from constantly being worried about shitting myself in the pool, the whole experience was really really nice. In the end, my chair was covered in towels, I was craned back in, cocooned in more warm towels, and sent blissfully driving back to my room; I was so relaxed I almost felt drunk.

 

I never got to use the HydroWorx pool but I feel it’s important to stress how cool this thing is. The floor of the pool is fully adjustable, meaning that you don’t need a lift to get in, you just walk onto the floor and it lowers to the required depth. Not only that, but the whole floor acts as a big variable speed treadmill for walking therapies. To help with that, there are a number of underwater cameras that let therapists closely monitor a patient’s gait from multiple angles. Aaaaand, the jets in the pool not only make it turn to an infinity pool for swimming therapy but also provide deep tissue massage for patients… I mean, come on, that’s pretty cool, right!? Plus, my friend Erin is friends with the daughter of one of the guys who designed it! It’s a small world.

 

The standing frame for quadriplegics is like G force training for fighter pilots. The idea of the frame is to help SCI patients get into a standing position, which puts weight through your legs to help prevent a loss in bone density and also helps set a higher baseline blood pressure. I basically have the issues experienced by astronauts and fighter pilots, just without the benefit of going to space or flying planes. You start in a seated position with a padded block holding your knees in place so they don’t just buckle or bow as you are stood up. To the side of the chair is a long lever and each time you pull on it, the back of the seat begins to raise and move forward in small increments, slowly bringing you to a standing position where a chest high table is waiting to support you. However, the first few times I tried to go up, I didn’t make it past the first few degrees; if 0° is sitting and 90° is standing, I probably made it to 15° before I started blacking out. Thankfully if you push the lever, it quickly lets you back down into a sitting position. We would go up slowly, pausing every few degrees to allow me to renormalize before continuing. Even using this slow and steady procedure I couldn’t make it past 45° before the silence would grow deafening and the world would be quickly swallowed by darkness. I tried eating before, not eating before, taking blood pressure medication, and even drinking Mountain Dew; I’m not going to lie, that stuff is pretty repulsive but apparently has a lot of caffeine which can temporarily spike your blood pressure. According to the Mayo Clinic, this happens because… who the fuck knows? Does it block hormones that keep arteries widened? Does it cause the adrenal gland to spike adrenaline production? Unfortunately, unclear…

 

I remember the first time I was able to get into a fully standing position. I wish I had some explanation for why it worked but all I remember is constantly being surprised that I wasn’t blacking out and we just kept going up. For me, it helped to not wear a binder or corset but to put one on just for the standing frame. Eventually, I just skipped the corset all together and just went from sitting to standing relatively quickly but having the chest pad set up to press into my abdomen relatively firmly, taking the place of a corset. In any case, that was the first time I had been fully upright, at eye level, with people. In my chair I am around 4’ 7” but in the standing frame I stood tall at around 6’2” and there is a distinct difference in the way people interact with you at those different heights. I remember one of my therapists remarking that I was taller than they thought, despite having worked with me for a few weeks already. Beyond just the physical benefits of using the standing frame, I feel like it also provides a nice emotional or morale boost.

 

Moving from vertical to horizontal orientation [standing to sleeping], back in the room, you hear the door creep open, or maybe it’s the light from the hallway that wakes you up. “Good morning!” STAB STAB STAB, aww what the fuck… ok, “stab” might be a bit of an aggressive description, but when the first solid connection to reality you have after being woken up at 5 am is a rubber band around your arm, a cool sensation in the crease of the elbow, followed quickly by a needle poking you in the arm for a blood draw, it feels aggressive. Hopefully they are able to find the vein and get it on the first try. Though, given that they are trying to do everything in relative darkness with an impatient in-patient with low BP, it’s impressive they get it at all. There was one older phlebotomist who I remember being truly impressive, he would slip in without making a scene, he had a way of waking you up without it being jarring and was skilled enough to not only get it on the first try but to the point where I was able to fall back asleep before he was done on more than one occasion; he was a magician.

 

On the other side of things, one morning it was a younger guy who was coming in for the blood draw, and things did not go quite as smoothly. Not only did he miss and have to retry 5+ times, every time he tried, he would fish the needle around trying to find a vein. When that didn’t work, he switched to the other arm to see if he would have any more luck… nope, he didn’t. I felt bad, with each miss the anxiety in his voice was climbing as he constantly apologized. It’s really difficult to not show your frustration with the fact that each attempt was making it less and less likely that you will be able to go back to sleep, no matter how many times you tell them, “It’s fine.” It’s similar to when somebody wakes you up to ask you a question; if they wake you up and quietly ask a single question, it seems like an unremarkable event, but as the questions become louder and more numerous, the desire to throw things at that person increases exponentially. In this analogy, each successive attempt is like a new question and how long they fish around in your arm trying to find the vein represents the volume of each question.

 

I’m sure I asked at some point and received a reasonable answer, but to this day I do not remember why they thought that waking people up for blood draws was good for the mental health of anyone involved. I don’t consider myself to be a great person, or even a good person for that matter, but I’m well aware that there are far bigger ass holes out there in the world, and I can’t imagine the physical or verbal abuse healthcare workers must endure on a daily basis. So, to all phlebotomists out there, including the guy who stabbed me like a million times that morning, thank you for putting up with us.

 

Speaking of unpleasant experiences… I’m not sure if it is because the muscles that oppose the movement aren’t responding or if it’s just because they are the only muscles that work, but there were two motions that dominated the weeks and months after my accident. First, with every “shiver” or twitch, my bicep would pull my arm a little more into a chicken wing; my limp hand would end up just under my chin with my bicep pulled tight. At the same time, my shoulders start to climb up as my neck compresses downward, as if I was a turtle trying to pull my head back into my shell. It typically happened when I felt cold, which is the majority of the time when you are a quadriplegic. Your hypothalamus is responsible for both thermoregulation and fevers. However, if you break your spinal cord above the T6 level, signals to and from the hypothalamus are weakened or non-existent, impairing your ability to respond to environmental temperature cues.

 

This constant tension from the base of my skull down my neck and out to my shoulders was just relentless; with concerted effort and focus, I could relax a bit and keep from curling up, though I would always need someone’s help to pull my arms straight if I was in bed and couldn’t utilize gravity. Similar to decorticate posturing where you experience a loss of the extensor muscles in the arms; the biceps curl, the elbows tuck into the body, and the wrists bend down, except my wrists would go the opposite direction.

 

My doctor suggested we try lidocaine injections into the trigger points in my trapezius muscles. I had no reference point for that type of thing, it was the first I was even hearing what a trigger point is. Apparently, trigger points are taut bands of skeletal muscle located within larger muscle groups and can be sensitive when touched. The lidocaine is injected into the trigger points to get them to release and relax. The other therapy used at the hospital involves dry-needling, which uses very thin needles with no medication (“dry”) to stimulate the underlying trigger points and connective tissue, with the same end goal. However, studies have shown that the lidocaine therapy generally leaves patients less sore and sore for a shorter period of time, so that was option one. It’s pretty uncomfortable, as you might imagine someone digging needles into your shoulders might be. They are looking for a specific spot, which is indicated by a twitching response in the muscle. I found it pretty amusing until I realized that we were done but I was still twitching… and it did NOT feel pleasant. I mean, the muscles were already sore and tense, so adding in an intermittent intense pulse started out as painful and slowly progressed to be excruciating. In the hundreds of patients who have received the treatment at the hospital and the hundreds of patients I have read about in scientific studies, I seem to be unique in that reaction; the painful little snowflake (read as the title to a terrible children’s book.)

By the next day, when the pain and twitching hadn’t subsided, I was in tears. It was like having the hiccups, but instead of gulping air, you get mildly stabbed in the shoulders. It seemed clear that the pain wasn’t going away so my therapies for the day were canceled and I was given cyclobenzaprine, a muscle relaxer, to try and stop the spasms. I remember starting to slur my speech and lose what little control of my muscles I did have, and then I was out. I went in and out of sleep, waking for brief periods of time steeped in a post anesthetic like fog, telling my brain to just go back to sleep.

 

Over the next two days, we tried a number of different things to try to make it stop. They gave me heated blankets, massages, and drugs… They even created a makeshift heat pack by placing damp towels inside of a trash bag, sealing it, wrapping it in a dry towel, and microwaving it. Everyone was amazing and was doing everything possible to find me some sort of reprieve, but nothing seemed to have any lasting effect. I’m not sure how it came up but there was a woman there who did something similar to reiki “energy healing,” and despite studying physics and thinking it was total bullshit, I decided to give it a try; anything to get rid of the pain. I can’t really provide you with much information on how it works, as that seems to be ill-defined.  In any case, maybe it was the relaxing atmosphere, maybe it was just coming to an end, or maybe whatever she was doing was working, but by the time she was done, my shoulders had relaxed a bit, and most importantly, the painful twitching had finally subsided. I can’t really claim that I am any less skeptical about energy healing, a sample size of one is not very scientific, but I would definitely give it a shot if I found myself in a similar situation again.

 

Feeling like a human again, it was time to make a bit more effort to look like one. Looking back at pictures from Craig Hospital, it appears as if I had just cut my hair and shaved shortly before the accident. For me, this meant that I had taken a set of clippers with a #2 guard and buzzed my whole head, a tradition I had maintained for at least a decade. The recency of the haircut meant that neither was an issue while I was in the ICU; however, now that I had spent some time at Craig hospital, it was starting to become an issue. For those of you without facial hair, there comes a point in growing it out where it becomes unreasonably itchy, it feels like your face and neck have suddenly become host to a colony of fleas. This feeling was exacerbated by the fact that I was stuck in a neck brace and made particularly cruel by that whole, “not being able to even reach my face to scratch it” thing. I remember the countless times where I had people scratching me under the chin like I had been a very good boy, like I was an elated old dog. The problem is, how do you cut someone’s hair or shave their beard when they are wearing a neck brace that is covering considerable portions of what needs to be cut?

 

Removing the neck brace felt a bit like if you had just glued something back together and weren’t sure if it would hold together but you needed to let go and see. Except, the thing you are gluing together is your neck and if it falls apart, you can make yourself more paralyzed. It all just feels so precarious, the loud clicking noises and the shooting pains just add to the anxiety.

 

When the problem had become too much to be allowed to continue, the plan was to go for a shave and leave the hair for now, because priorities. For the shave, my neck brace would be removed and someone would hold my head in place as someone else would shave my face using some electric clippers; for the first shave, these duties were taken on by my sister, my friend Autumn, and my nurse. I don’t know if it was because I couldn’t feel much else or if I had some heightened sensitivity to pain but I definitely jumped a number of times when it felt like the clippers were pulling the hair out of my face rather than cutting it. I don’t remember that ever being a problem with those clippers before the accident but I definitely remember the consistently it would happen when in the hands of someone else.

 

It’s one of those situations you find yourself in quite frequently as a quadriplegic who was used to doing things for themselves [cooking, cleaning, fixing things, making things, etc.]; you have to ask someone else to do something for you and you have to live with the fact that maybe they are not as anal retentive about the details, maybe they don’t share my same neurosis for things being oriented perpendicular or parallel relative to each other, maybe I’m just not able to perfectly articulate exactly what I want, articulating your exact desires is both difficult and tedious. Or maybe they don’t have the physical attributes required for the task, etc. The list is endless and is endlessly frustrating, but that frustration is the motivation for my moves for independence. There are only so many times you can stand someone, trying their honest best, putting your underwear on very clearly sideways. The rest of the shave was a mix of gratitude and contempt.  Honestly, it probably would have pulled hair out regardless of who was doing it but it’s much easier to accept when you are doing it to yourself vs someone else doing it to you.

 

The relative of another patient on the floor was a hairdresser, I think, and they came by and cut my hair for free and the experience was entirely pleasant as far as I can remember. Well, minus the typical rush of anxiety or panic that came with taking the collar off for any reason. Again, to whoever you are, thank you.

 

Through all of the different therapies, I was still working with the full neck brace and full-sized trach, which was usually plugged by the red cap. Once they put the red cap on the trach, the next step is to incrementally decrease the size until finally removing it. This allows the hole to gradually close before putting a bandage over it and letting it fully heal. The idea that I wouldn’t need stitches or really anything more than a fancy band-aid to close the gaping hole in my throat was wild to me. However, before that, it would need to be removed and replaced 3 or 4 times. These changes were generally very quick and painless. For each change, someone would hold the trach in place as the gauze going around the back of your neck to hold it in place is cut. Then the cuff blocking the airway outside the trach is deflated and the trach is removed as you exhale. The area around the stoma is cleaned before the new smaller trach is lubricated and inserted as you inhale.

 

Unfortunately for me, the first time they went to change it, it had been in for a significant amount of time, meaning that it had become slightly stuck. When they deflated the balloon and tried to slide it out, it caught and had to be worked out. I don’t remember it being particularly painful but I distinctly remember the sharp anxiety on every subsequent attempt. It probably related to both the fact that it was hardware in my throat and all of my previous adventures in not being able to breathe; the stakes felt high. I guess the anxiety, or the irrationality of the anxiety, is similar to adults who are terrified of needles and injections. The pain is negligible but you have already attached a feeling of fear to the action. It was to the point where I would consistently try to push it off as long as possible, which ironically just prolonged the amount of time I had to have a hole in my throat. It was another example of my, “if it’s not absolutely destroyed or getting worse, don’t fix it” philosophy.

 

They would always get a little laugh out of my hesitance and would eventually convince me it would be fine, and it always was... save for the minor hiccup that first time.

 

Given that I couldn’t really see the trach, the first time the inner portion was removed to clean everything, I asked my sister to take pictures. It was really difficult to not be able to see what people were referring to when they were doing something with my neck brace, my neck, or my head. I was always trying to picture what they were talking about and to build a mental image but turning verbal descriptions into accurate mental images is not my strongest point, at least not with medical procedures and equipment. Though, sometimes it might be better to not see certain things, ya know, out of sight out of mind? I generally don’t get squeamish with medical procedures, which is why I enjoyed watching my own surgeries so much; however, the aftermath of my fistulotomy a few months after leaving Craig hospital, which I will discuss later, was something I wish I had listened to the doctor and just not looked at… it still makes me cringe a little [shark bite, ooh ha ha].

 

Much like with the downsizing of the trach, avoidance was my go-to strategy when it came time to remove it. You might be inclined to think I would have been chomping at the bit to get the piece of plastic out of my throat, given that I wasn’t even using the thing; however, when they remove it, there is no surgery, no stitches, no glue… just a fancy band-aid… to cover the hole in your throat. I wasn’t a huge fan of the whole removal process, but far less of a fan of the idea of just having a patch over the hole. Though, thinking back, I don’t really know what the functional difference really was in my mind, I would guess that it was simply the change to an unfamiliar situation. Everything in my life had just been blitzed in a food processor, and I was desperately grasping for some semblance of familiarity or permanence, just a bit of stability. The familiarity of having a tube of plastic stuck through my throat seemed more appealing than the novelty of, ya know, healing.

 

They indulged my little games to put it off for a while but eventually convinced me to just go for it. As far as I remember, it was as easy as taking a deep breath and then exhaling as they slid the trach out, painless. After cleaning everything, they placed a Tegaderm or Duoderm bandage over the front of my throat and that was that… kinda.

 

The opening typically heals surprisingly quickly, but the more pressure you apply, the more likely that you push air through the hole and increase the time to heal. So, every time you talk, strain, or do anything that increases air pressure in your lungs, you increase the likelihood of popping it open. Now, it’s not like it would just blow wide open, that flexible bandage was there to hold things together. But when you did push air through, the bandage would bubble up at that spot like the vocal sac on a male frog. Ribbit. It was conflicting, on one hand, it looked objectively hilarious, but on the other, I really wanted it to heal. On a few occasions, the bubble would push through an edge somewhere and would start leaking air, but a quick dressing change would set things right, and in a few weeks, everything closed up and healed.

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Kenji Kanagawa Kenji Kanagawa

Chapter 11 – New room, new therapists 

After a week or so, one of the nurses came by my room and asked if I wanted to see the suite rooms, where someone would be able to stay in the room with me. Even though this didn’t mean that I would actually move to one of those rooms soon, it definitely felt just as exciting. We rolled down the hallway, passed the nurses station, and over to the opposite corner of the building where a few doors were open. I think we went into a room which would end up being only one room over from the room I would eventually be moved to. I’m not sure why, but the personal touches to the room really threw me off; a Chicago Bears fleece blanket over the foot of the bed, different hats and posters, even those “get well soon” cards in the window, all just made me feel like I was in a stranger’s house when they aren’t home. Sure, a mutual friend invited you, but still… Aside from the personal touches, the room wasn’t as dissimilar to my current room as I had expected. As you enter, the first half of the room is a fairly standard hospital room, with the hospital bed on the right and a very large bathroom with a roll in shower on the left. As you move further into the room, everything becomes brighter due to the windows lining the far wall overlooking the space between the two buildings. The space that would be used for another patient, or wheelchair storage in my case, was replaced by a carpeted area with a small table and a couch. The couch pulled out to make a bed of questionable comfort.

 

I was only in that first room for a couple weeks before a suite became available and I was able to transfer over. Seeing as I didn’t have a roommate in my previous room, the main difference was basically just the accommodations for other people. For reference, as a child I had pretty intense panic attacks at night associated with sleep. When they happened, I distinctly remember the image of an enormous ball of yarn rolling towards me in a pitch-black space. It wasn’t a physical threat to me, it never seemed to get closer, but was definitely coming towards me. It wasn’t an adaptation of that Indiana Jones scene either, I hadn’t seen it. I think it was a visual representation of the crescendo of the roar of silence that I experience when having a panic attack; sleep overs were not my thing. I mention this because my experience in the ICU brought me right back to those childhood nighttime panic attacks. At the core of those fears was the thought that help would not be available if/ when I needed it. In my childhood, I remember crawling along the carpeted hallway between the bedrooms, having a panic attack when everyone was already asleep, which felt oddly similar to the times that I found myself awake at night in the ICU and didn’t see anyone around. Not having to rely on those call systems relieves a significant amount of that anxiety.

 

Trying to get someone’s attention, even when they are already in the room, when you aren't using the speaking valve and can’t move in any significant way, is a bit tricky. Maybe whistle? Close, but you can’t pass air through your mouth. The two options I found were to either make a popping noise with my lips or, my personal go-to, make a loud knocking sound with my tongue and the roof of my mouth. I could get the knocking sound to be pretty loud, which was ideal for waking up whatever poor soul was stuck sleeping in my room. Hopefully whoever was staying in there with me was a sound sleeper because they were also subjected to the bright light from the hallway every time someone came in to turn me or draw blood.

 

I didn’t add many personal touches to my room aside from a couple of Japanese wall hangings which were in my old apartment. Even so, along with the small living room area, it felt a little less like a pure hospital room and maybe a bit more familiar and comfortable, just little reminders of the world outside of the hospital.

 

My occupational therapist and physical therapist, while I was in Craig hospital in-patient, were Janessa and Mary, respectively, and though they had very different personalities they were both exactly what I needed. Their individual personalities seemed like the perfect fit to motivate me for the specific tasks they were asking me to do. As a more extreme example, imagine if your therapist was out one day and, in their place, you got a Marine Corps drill sergeant screaming in your face. I’d imagine it to be equally as ineffective as your therapist trying to intimidate the Marines and push them to their limits, but I don’t know your therapist. My point is, their personalities perfectly matched their jobs. For me, they were the ideal motivators, able to extract everything I had to give when trying to learn a task. The major difference between the tasks for my OT and PT sessions, in my mind, boiled down to fine motor control and gross motor control, respectively.

 

For the OT side of things with Janessa, her soft bubbly personality made the inevitable avalanche of failure surprisingly tolerable. I found myself laughing at my complete lack of coordination while trying to relearn everything from eating and writing to cooking and cleaning. I typically really dislike unearned encouragement [it feels like they think I’m too stupid to know it is BS], but there was something about her mom-like encouragement that, while not always earned, felt natural because I was relearning child level tasks. Strangely, she had one of those ever-positive attitudes that I would usually shrink away from; but it wasn’t like her positivity was overflowing and trying to attack you, she just seemed appropriately happy at all points and her ‘neutral’ would probably be interpreted as positive. The fact that she was never phased by my failure and never had that look of pity helped normalize the failure, or more accurately normalized the amount of effort it might take to see tiny bits of progress. Through sheer disposition, she helped me to stay neutral in failure but to celebrate those little gains.

 

For the PT side of things with Mary, her more direct and no frills approach really helped me accurately judge how I was doing. Determining how much I was or wasn’t doing when practicing different movements was difficult without the ability to feel what was happening, so knowing that she wasn’t giving me credit for things that I wasn’t actually doing or able to do, was essential for me. It wasn’t that she wasn’t happy or positive, she just didn’t bother with that extra frill on her personality; something I found particular joy in witnessing first hand. For example, a not insignificant number of other therapists had that irking feeling that she just didn’t like them. Everyone respected her and thought highly of her, they were just also fairly intimidated. To be clear, she was never mean to anyone, it’s just that when someone isn’t trying to manage the other person's feelings, some people can find it unsettling. As a fun game, next time you talk to someone you know, try saying exactly what you would normally say but pull the emotion back and just use a flatter tone; see how they react, but also see how the experience makes you feel. How much energy are you putting into convincing people that you feel a certain way, outside of just what words you use. One small example of what she has done for me is my favorite ‘game’ from therapy. She would start by having me sit on the therapy mat with my legs out, propping my torso up with my arms. Then, I would have to raise my arms and use them and along with little head movements [I was still in a neck brace] to balance my torso and try to stay upright while she gave little pushes and pulls from behind to try to unbalance me. I probably liked it because I was good at it but refining that skill has been infinitely useful in my independence.  

 

In social situations my insecurity and discomfort force me to expend a significant amount of energy trying to be a “Janessa”, while deep inside, I just wish I had the confidence to be a “Mary.” Their personalities were entirely genuine, which made them both all the more endearing. I guess I was actually jealous of both and those opposing aspirations are an essential portion of the foundation of my social anxiety. Both of them were amazing throughout the process and, somehow, they were just the right type of catalyst to help speed up my recovery and really make the most of the time I had with them. I probably saw them more often and more consistently than anyone else aside from the CNAs and nurses. They were also integral in the most important decisions I had to make throughout my recovery. I think about them all the time and would love to see them but my anxiety has me convinced they don’t remember me and I don’t want to just assume they remember me and would want to talk; after-all, while they were my saviors, my heroes, I realize I was part of their job [you only have one 3rd grade teacher, they had thousands of 3rd grade students] and I wouldn’t want to assume I’m any more important than that.

 

Because of the variety of respiratory issues that I had, such as the pneumonia I had in the ICU, the mucus build-up in my lungs, and the tracheostomy, I would receive regular visits from the respiratory team at Craig hospital. There was a fun duality where they were the sweetest people so I was excited to see them but the things they had to do were really unpleasant so I dreaded what their presence foretold.

 

On the lighter side, they had me use a nebulizer to inhale vaporized medication [albuterol]. I would sit there breathing through the rigid plastic tube, listening to the light bubbling sound of the medication being vaporized. From time to time, they would have to lightly flick the container attached to the tube that contained the medication to make sure that all of it was being used. I don’t think I ever thought the treatment was all that unpleasant but I do remember the therapists always apologizing for it. There was a slightly unpleasant rotten egg sulfur smell but when you are inhaling a drug called Albuterol Sulfate, that isn’t exactly unexpected, plus, the smell or taste was never very strong. Some of the therapists joked about having trainees smell the container, only to spray it all over them, making sure that for the rest of the day they smell like an egg salad sandwich forgotten in the trunk of a Cadillac during a Mississippi summer.

 

On the more unpleasant side of things, there was the cough assist machine, something that would give me spikes in anxiety just seeing it rolled into the room; especially because I was well aware there was nothing that I could do to get out of what was coming. On the surface it doesn’t sound so bad, a machine that helps you cough sounds pretty useful when you have no ability to do so on your own. And if everything went perfectly and your timing was flawless it was not terrible and it was effective. It’s when things got off a little that the experience quickly spiraled downward. The machine works by providing positive air pressure during a slow timed breath in, helping you fill your lungs, think of something inflating the balloons that are your lungs. Then, the machine suddenly switches to a vacuum to help suck air and mucus out of your lungs. I knew how much time to inhale and how long the exhale would be but when I inevitably got it wrong and was still inhaling when the machine would suck the air out of my lungs like someone just punched a hole in a spaceship, all hell would break loose. At that point, instead of helping induce a single strong cough as intended, it would cause a coughing fit. However, the vacuum used to help pull air and mucus out makes it impossible to breathe in until the next cycle. Trying to get back into rhythm was pretty difficult. It wasn’t as if as soon as the machine switched back to positive pressure, I suddenly got some sort of reprieve; nah, now I was just faced with the opposite problem, with the machine trying to inflate me like a panicked and unwilling balloon. It was undeniably effective at clearing mucus from my lungs, something I was entirely incapable of on my own, but it felt like the machine was trying to kill me.

 

The nervous laughter from when I first saw the respiratory therapist, which was usually a cover for the fact that virtually nothing that they were saying was actually making it passed my anxiety to reach my brain, would turn to elated giggles after the fact; almost a “holy shit I’m still alive!?” kind of endorphin rush.

 

As a random side note, I remember talking to one of the therapists and having her describe how she was self-conscious of her looks because she had an accident requiring surgery to her face at some point in the past; but I remember being really confused because A.) She was really pretty and B.) Even after she pointed it out, I couldn’t seem to see what she was talking about, it was like, “ma’am, I have no idea what you are talking about, but if you are trying to tell me you were MORE attractive before, well that’s just ridiculous” I guess my point is, sometimes our baggage isn’t as visible to other people as it is when we look in the mirror.

 

During my stay at Craig, I had a lot of CNAs and nurses; honestly, too many to list individually, but they were the most important people to my mental health and daily functions. They did everything for me; they bathed me, did my bowel program, fed me, dressed me, got me in and out of bed, turned me at night to prevent pressure sores… the list is virtually endless. It all works and feels a bit backward from how you might imagine. CNAs take on the vast majority of patient requirements and have an enormous impact on your mental and physical health, despite technically requiring the fewest hours of training and specific education. Next up are the nurses who basically oversee your daily care, take care of medications, catheter changes, deal with injuries and areas of concern… generally the more technical aspects of your care. There is a fairly significant increase in the requirements to become a registered nurse (RN), licensed practical nurse (LPN), advanced practice registered nurse (APRN), etc. and many CNAs that I met were working on nursing degrees while working as CNAs. One important point is that it shouldn’t be looked at as a step up to go from CNA to nurse; while there is an increase in pay, very rarely in society does the salary truly match the value of the work. That is in no way to denigrate the time, effort, money, etc. it takes to become a nurse, it’s just to emphasize the disparity between how important the CNAs are and how little respect and compensation they receive.

 

This same relation exists between nurses and doctors; it’s basically a situation where the more education they go through/ the more they are paid, the less you see them and the less their perceived impact becomes. It’s difficult building that immense gratitude for and connection with doctors you rarely see when you have CNAs and nurses who you see for multiple hours each day. This failure to appreciate, in a tangible manner, everything that the nurses and CNAs is compounded by the fact that as you go down the pay scale, the employees are asked [forced] to take on ridiculous, and at times impossible, workloads; “in the next hour, please shower and dress these 5 people. Oh, and feed them breakfast, which you will have to go retrieve. Oh, and be prepared to be physically or verbally assaulted…”

 

I am friends with a few of the CNAs and nurses I had via social media, and I frequently think about and tell stories of others and wonder how they are doing. The thing is, I never want to bother them and almost feel arrogant thinking they will remember who I am. It goes back to the whole, you see one set of people during your stay but they see an endless stream of patients, thing. It’s not even that I would be hurt if they didn’t remember me but more that I don’t want to put them in the weird position of having to give the ole’ “oh heyyyy… you…” or “um, who are you, again?”

 

In any case, they were my first line of defense for everything; injuries, sores, pain, people I didn’t want to see, etc. They took over every ability that I lost, and for someone who is obsessive over small details, their work was especially impactful to my mental health, and obviously to my physical health. They also had to teach me, or really force me, to get used to instructing people on my care, something I was and still am very uncomfortable with. I don’t mind instructing someone in something that will benefit them, or really anyone but me; but as soon as I am the beneficiary of the work, the idea of telling someone to do something, makes my skin crawl. It only gets worse as things become more specific or tedious. At some point, I have to start judging how many times I can ask someone to do something exactly how I need it, making multiple adjustments along the way; or, I just say fuck it and once they are gone, exhaust myself trying to fix, undo, or redo, whatever it was I was asking them to do.

 

At first, I had to just shove the mass of anxiety from things not being perfect way down inside, and just deal with things as they were. It was honestly exhausting trying to accept my inability to just satisfy all of my entirely trivial compulsions; did it matter if the things on the desk were stacked in order of size, all perpendicular or parallel, with each item pushed to align one corner of all the items? No. But did I obsess over it like it was mission critical to my survival? 100% Eventually, I just started learning to do it all myself to avoid the amount of social interaction required to get the desired result. It’s not that they were incapable, well, most weren’t, it was just that they didn’t see the same benefit that I saw in spending irrational amounts of time on trivial things like, say, making the wrinkles in my pants bilaterally symmetric.

 

They indulged my strangest requests; before I could eat or drink, I would get really bad dry mouth and would basically beg for them to let me have ice. Given that I could aspirate the water, giving me ice involved them spoon feeding me ice, allowing me to chew the ice, and then suctioning the water out of my mouth before I inevitably got the overwhelming compulsion to swallow just a bit, which, without fail, would go directly into my lungs meaning they would then have to suction my lungs with a catheter. Despite all of this, I couldn’t begin to count how many times they sat for long periods of time going through the whole procedure, essentially just to calm my anxiety. Physically, I was fine, but something about not ingesting anything orally for all that time triggered a desperation and panic that I was not prepared to deal with. It’s also possible that I was hot and because I couldn’t sweat, it was one of the only ways I had of cooling down. They were there for me at 2 PM or 2 AM, and despite having overwhelming responsibilities, they always went above and beyond. They even made fake signs saying people had to check in at the nurse’s station before entering my room, to prevent unexpected or unwanted guests. It’s not like I had an overwhelming number of guests or even a lot of people I didn’t want to see, sometimes, it just felt like my own presence was too much social interaction for me. It was like all of the forced or necessary social interaction made me somehow need negative amounts of social interaction. I had a fair number of odd needs and requests and my nurses and CNAs didn’t blink in helping me. 

 

Here’s the thing, for as critical as nurses and CNAs are to the healthcare system, they are rarely compensated appropriately, especially given the insane amount of responsibility and liability forced on them. I’ll use the situation here in Colorado for simplicity and because certain aspects are particularly bad; and while the situation is better or worse in different areas, I don’t think it’s ever great.

 

As an example of how idiotic the current state of affairs is, the government, at the time of writing, is considering capping nurse pay, mostly targeting travel nurses, while giving 0 fucks about the ever-inflating salaries and bonuses of the administration and CEOs. I’m not sure why anyone feels that is even remotely acceptable. My only guess is that, similar to the situation with teachers, where their own good will is being held against them at the negotiation table. It’s almost as if people are saying that because you do that job, not for the money, but because you care, we’re going to need you to prove it by suffering unacceptable wages and treatment. Why should the CEO of the hospital be able to take a 7-figure salary and 6-figure bonus while you cap the nurses pay at a wage less than that of a tattoo artist… like, what!? They are a highly skilled group, putting their physical and mental wellbeing on the line to literally save lives, and should be compensated and protected accordingly.

 

As one traveling nurse, @Wanderrlex on Instagram, put it:

 

“Colorado is not unionized and we see it in our hospitals every day. As a new grad working at a level one trauma center in Denver, I rarely ever got a lunch break, was expected to care for 6 step down patients on my own if working the night shift, and was barely living paycheck to paycheck. Colorado ranks 48th, FOURTY EIGTH, in the country for nursing pay vs cost of living. Costs continue to rise and nursing pay is not keeping up at all. Last year I got threatened with termination for trying to bring my own PPE from home when our supplies were low – the doctors came into the covid units in custom ordered hazmat suits. These hospitals don’t give a f*ck about us.”

 

There is also the case of RaDonda Vaught, formerly a Nurse at Vanderbilt University Medical Center, who was charged with two felonies after she mistakenly dispensed the wrong medication to a patient, resulting in their death in 2017.

 

In response to the verdict, the American Nursing Association (ANA) and the Tennessee Nursing Association (TNA) released a statement saying:

“We are deeply distressed by this verdict and the harmful ramifications of criminalizing the honest reporting of mistakes.

Health care delivery is highly complex. It is inevitable that mistakes will happen, and systems will fail. It is completely unrealistic to think otherwise. The criminalization of medical errors is unnerving, and this verdict sets into motion a dangerous precedent. There are more effective and just mechanisms to examine errors, establish system improvements and take corrective action. The non-intentional acts of individual nurses like RaDonda Vaught should not be criminalized to ensure patient safety.

The nursing profession is already extremely short-staffed, strained and facing immense pressure – an unfortunate multi-year trend that was further exacerbated by the effects of the pandemic. This ruling will have a long-lasting negative impact on the profession.

Like many nurses who have been monitoring this case closely, we were hopeful for a different outcome. It is a sad day for all of those who are involved, and the families impacted by this tragedy.”

 

Additionally, the New York State Nursing Association (NYSNA) published an article explaining some of the important issues intertwined with this case, in which they said:

 

“The case shows how individuals are scapegoated at the expense of fixing systemic issues caused by the healthcare industry cutting corners on staffing, training, equipment, and the health and safety of workers and patients.

How many nurses saw this case and thought about their past errors or near misses? How many nurses reflected on a time when the system forced them to override faulty equipment, overlook a safety issue, take on an unsafe patient load, float to an unfamiliar area without much training, or not strictly follow a procedure because that is what hospital administrators routinely expect of them?

Nurses are under tremendous pressure every day to cut corners and “do more with less.” Although many hospitals say they promote a culture of safety, the reality is very different. Hospital policy may say that if a member of the healthcare team raises a safety concern, everything stops until the problem is addressed. In practice, nurses are too often rewarded for creative workarounds and diminished for being the squeaky wheel who notices too many problems or submits too many Protests of Assignments or Occupational Safety and Health Administration complaints.

In the RaDonda Vaught case, her hospital reported that the patient died of natural causes instead of notifying federal regulators of the medication error as required by law. Although state investigators admitted that Vanderbilt had a "heavy burden of responsibility" for the deadly error, prosecutors pursued penalties and criminal charges only against the nurse, not the hospital. Vanderbilt only took corrective action and made safety improvements after a full investigation by the Centers for Medicare & Medicaid Services.”

 

Essentially, nurses and CNAs are set up for failure by the hospitals in order to maximize profits and can then be held criminally responsible for mistakes, while the hospital somehow skirts all responsibility. As a final note, obviously people should be held accountable for their actions, but you always need to look at the full context surrounding the incident. You could argue that ‘good nurses don’t make those types of mistakes,’ but I would counter that good hospitals and administrations don’t push their nurses so hard that these situations are far from surprising.

 

The whole time I was at Craig hospital, I tried to skip showers as much as possible. They were supposed to happen every other day but I would try to bargain with my CNA to push it back a day, and most times they would begrudgingly oblige as long as I would agree to take one the next day. Of course, the next day I would either act as if I took one the previous day or try the same game as the day before. The thing is, water does a much better job of conducting heat than the air, so any time there isn’t hot water directly on you, that water is just carrying away your body heat. Also, because my temperature sense was next to useless, the water was either not warm enough or scalding. As soon as the water stopped, the “shivering” would start. I put that in quotes because instead of just shaking a bit, certain muscles pull tight but the opposing muscles don’t work so I end up curled up and twitching; similar to spiders who only have flexor muscles in their legs but no extensor muscles, except I don’t have hemolymph to extend my limbs. My wrists curl back, biceps curl my arms up, and then my shoulders raise up like I am trying to wear my shoulders as ear muffs. In my experience, even multiple warm towels, as fucking amazing as they are, weren’t enough to defeat the cold dry air. The only way to make it comfortable is to do the shower with the water as hot as tolerable with the door to the bathroom closed. That doesn’t sound so difficult until you consider the fact that there is another human in the room who does actually have the ability to generate heat internally and for them it’s like trying to work, fully clothed, inside a sauna. Add to that the fact that they probably have to do that another 4 or 5 times that night with other patients, it’s not something you want to put them through.

 

It was always a balancing game in my mind, on one side of the scale was my pain and discomfort and on the other was the inconvenience and discomfort of my nurse or CNA. Not showering seemed like a far better option than either being cold or asking them to be uncomfortable. There was also the constant decline of blood pressure from being in a shower chair where you can’t do weight shifts. The shower just feels like you are watching your energy slowly flow down the drain. The real fun part comes when the CNA giving you a shower has to go do something else [because they are overburdened and giving 3 other people showers] and they loop a string tied to an emergency call system around your finger and leave you to hopefully not black out or drop the string. At some point, I would always think, “huh… shit… I hope they didn’t forget about me…” which only actually happened once; she was the only CNA that I specifically asked to not have again, which seems fair, no? The blood pressure thing wasn’t unmanageable but it was just the cherry on top of the exhaustion Sunday. I should be clear that they almost never let me get away with more than two days without a shower, despite my concerted efforts to become Pig-Pen from Peanuts. 

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Kenji Kanagawa Kenji Kanagawa

Chapter 10 - Sleep

Night time at the hospital was, ironically, possibly one of the most mentally exhausting parts of the whole rehab process. Just on a structural level, because you can’t move, those pressure sores are a real worry and so in the beginning you get woken up every 30 min so 2 people can come in and turn you. I still remember getting to choose whether I started on my left side, right side, or back, feeling like a significant decision. This was most likely because sleeping on either side was massively uncomfortable which meant that at least half the time I was in significant pain or discomfort. To the credit of the CNA’s who had the unfortunate task of waking up a bunch of cranky ass freshly paralyzed people, there were a significant number of times where they were able to do this without waking me up. Even when I was awake, I remember countless conversations with the CNAs about all sorts of random things, including one conversation with a young woman who was interested in engineering, where we talked about the counterbalances at the tops of cranes. Next time you see a giant crane, the construction tool not the bird, look at the short end of the crane at the top, there will be a number of large blocks that are made of metal, concrete, or a mix of both. Those blocks are used as counter weights as the crane lifts and maneuvers its payload. Ironically, even though I could recognize them, I almost never saw what the CNAs actually looked like, I only knew their silhouettes, voices, and mannerisms. They made the most unpleasant things tolerable. Who would have thought I would like the people who woke me up multiple times a night, every night, for months…

 

Now, for those times where you woke up on your own accord due to pain, discomfort, nervous energy, or from being in the middle of a panic attack, there was a call system set up that would call the main desk for your floor or wing. There were multiple trigger types for this call system including a ball hanging from a string that you would hit, a cell phone size pressure plate that you could press, or even a button built into the hospital bed; it would be a while before I would have the dexterity to be able to use that button. I started off with the ball hanging from a string because it seemed fairly straightforward but also difficult to accidentally trigger. I remember waking up one night in a significant amount of pain and trying to hit the ball… After about 4 or 5 complete misses, my anxiety started to build. Each attempt required a significant amount of energy, just lifting my arm required a fair amount of energy and concentration but then to try to swing it in a controlled manner and hit a target proved far more difficult than I had anticipated. Of course, we had tested this out beforehand, but when something works the first time quite easily in ideal conditions, it’s tough to remember how much more difficult it can be when you’re tired, in a strange position, or any other little thing is different. Finally, on my next attempt I made decent contact and the ball started swinging, I felt like I just hit a home run. However, instead of the deafening roar of the crowd [the sound of the nurse asking if I was okay or needed anything], I was met by a concerning silence. After a few seconds of intently listening for a response over my increasingly heavy breathing, I realized no response was coming and I would have to try again.

 

Over the next dozen or so attempts, I was able to hit the trigger once or twice more but heard nothing but panic inducing silence. Aside from just giving up, there weren’t many alternatives. Without a voice, you can’t call out for help; without muscle control, you can’t make enough noise to attract attention; and without triceps, once your arm gets into a bad position there is no recovery. Now you’re stuck, in an even more uncomfortable position than before, and provided that you’re not actually dying to the extent where your monitoring equipment is alerting someone, you have to just ride out whatever situation you’re in. When the CNAs did come in to turn me, they found me sobbing, at the end of a panic attack, just exhausted… It’s also not a quick procedure to describe what the issue is when you can’t speak and they can’t see you mouthing the words in the dark, and I hadn’t quite yet learned how to whisper out a few words at a time.

 

Because I spent a significant amount of time in bed while I was at Craig, and I wasn’t able to keep myself warm, I was perpetually covered in blankets. There was a myriad of choices when it came to the types of blankets, which could be combined to keep you comfortable in just about any situation, including an entire selection of heated blankets. The nurses and CNAs did a great job of tucking me in and making sure I was warm enough, fully cocooning me in blankets when needed, leaving just my face poking out, as if I were just poorly anthropomorphized bedding. The weight and warmth of being properly tucked in is surprisingly comforting, as well as comfortable. It probably stems from the same idea as weighted blankets or those hug machines or squeeze boxes designed by Temple Grandin to calm hypersensitive persons (typically with autism); like getting a hug, but without any anxiety that may come from hugging an actual person. That all seems great until you try to move and it feels as if the blanket somehow weighs 10,000-lbs when you try to lift it but lies as gently as a feather on top of you. It seems pretty obvious that if you are struggling to lift your arm when nothing is on top of it, adding a blanket completely immobilizes you. I guess it’s not too dissimilar to wrapping a baby in a blanket; it's soft, comfortable, and calming, but if they try to move, it might as well be a strait jacket. The thing is, when you are cold and shaking and twitching, you don’t necessarily always remember that it is a thing and all you care about is getting warm again. By the time I was feeling warm and able to start thinking again, as if my brain needed to be defrosted, it was too late and I might find myself alone in the room, unable to move, unable to reach the call button, with my body temperature continually climbing, underneath that blanket made of lead. 

 

As a kid, my mom was always the one to deal with my panic attacks and always helped calm me down. She would always stop whatever she was doing to come sit by my bed, just keeping me tethered to reality. Occasionally, if I was really spiraling out of control, she would rub my back until I fell asleep. She passed away 5 years before my accident, and while I would have loved to have her there for everything, I figured at least she didn’t have to see all of it. After my accident when I was in the ICU, my sister and Tyler filled that role, where just their presence was calming. A lot like the nurse’s daughter who sat with me and held my hand just after I broke my neck, I couldn’t feel her holding my hand and there was nothing she could do to help me, but having her there made me feel safer. Once I was at Craig and had gotten more used to being there, I didn’t always have someone staying in my room. My sister and dad would go back to their room in the outpatient and family housing building. Honestly, dealing with everything they had to and then sleeping on an uncomfortable bed and getting woken up multiple times a night must have been utterly exhausting.

 

I remember waking up one night after having a fairly normal dream… Well, before that, I guess I should explain that there was a strange progression in my dreams, where they took a while to catch up to the fact that I was paralyzed. It would start with little bits where I am in a wheelchair but then continuity would be broken and I’d be kicking a soccer ball or I would be walking but couldn’t go up and down stairs. It eventually became reality inside of my dreams as well, a hell of a phrase… in any case, that night, I woke up after a dream where I was fully able and I hadn’t yet come to terms with my paralysis. Had I been able to move I would have jumped; it was a shock. I didn’t really know where I was or what was happening, I was disoriented and in panic. No one was in the room and I couldn’t move. It took me a few seconds to realize where I was enough to hit the call button. When the nurse on the other side answered and asked what I needed, I remember just fighting through tears to say that I didn’t know and just asked them to send someone. The panic in my voice and the lack of any explanation must have been pretty concerning because in no time, two nurses and two CNAs showed up in my room. I still couldn’t really explain what was wrong, just that I was confused. Once they determined that there was nothing wrong, medically speaking, one of the nurses and one of the CNAs left while the other two stayed behind. They calmly explained what had happened to me and where I was, this was obviously not the first time they had to reorient someone. By the time they were explaining it all to me, I was just thinking, “I know, I know… but, I was just fine, now I’m paralyzed again.” I was fully aware of my situation within reality and that I had just woken up from a dream, and yet, I was still massively disoriented. They sat with me, held my hand, wiped my tears, and kept me company while I calmed down and reoriented myself within reality. Their presence just provided that bit of comfort that just makes you feel like things are going to be ok. 

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Kenji Kanagawa Kenji Kanagawa

Chapter 9 – Getting settled in

The first room I had at Craig Hospital was a two-patient room: I would have the spot next to the window and my roommate would have the spot on the other side of the partition, closer to the door. The thought of having a roommate brought about a lot of anxiety for a number of reasons. First, I didn’t really like being around people in the first place, so the idea of being trapped in a room with someone 24/7 for the foreseeable future was not ideal. Also, the social anxiety of “what if I make noise and annoy them? or what if I have to listen to their unbearable noises?” is constantly churning in my mind. However, all of this was put to rest when I got a bit more settled and they rolled me in front of the curtain to their half of the room. My roommate while I was staying in that room… The overflow of shower chairs and wheelchairs that were not being used; inanimate objects, my ideal roommate.

 

However, in these rooms, the patient’s family wasn’t supposed to stay and so they would be going next door to stay in the patient and family housing building. This also caused a fair amount of anxiety. I knew that if my family wasn’t staying in the room, I would be alone at night. Scenarios where I woke up struggling to breathe or where I was in significant pain or discomfort and needed help, played out over and over in my mind. It may seem silly but, while being in the hospital surrounded by medical staff should be reassuring, the difference between waking up not being able to breathe and trying to get someone’s attention across the room versus trying to hit a call button and hope there is someone on the other end who will magically appear to help and not assume it was an accidental call, felt enormous; more on that call system later. There was always hope of a room change to a suite, where my family would be able to stay in the room if they wanted, but for now this would be my situation; let’s be honest, I was in a great situation given everything that happened.

 

For the first few days after you arrive at the hospital you are not scheduled for any classes or therapies. I think it may have only been for two days but the whole “settling in” thing got old really fast. The room was a pretty standard hospital style room, with all the appropriate hookups on the wall for oxygen, vacuum, monitoring equipment, etc. so it wasn’t quite the change of scenery I had first imagined it would be. On top of that, when you’re lying in a hospital bed, even when you’re sat up, the view out the window doesn’t change and it becomes more of a painting than a movie. Add to that, not being able to see below the window line meant that all foot traffic and cars were also out of view, further eliminating any sense of change, any indication of the passage of time. Obviously, things changed, but nothing ever changed while you were watching; instead, if you looked back every hour or so it was like a spot the difference picture, with the shadows slightly shifted, a cloud that had wandered across the sky, and someone in the building across the street had opened their blinds. I’m pretty sure that by hour 4 or 5 I was already excruciatingly bored.

 

I have to say, it’s amazing how quickly you can get bored when you understand that you have no responsibilities beyond staying alive; I imagine this is why kids can be such a handful after only five minutes of inactivity. With nothing to occupy the mind on the grander scale, what is directly in front of you had better be pretty entertaining. I didn’t have to think about when I would eat next or how I would get that food; no thoughts of school, work, or socializing; hell, I didn’t even have to think about going to the bathroom. The lack of responsibilities all sounds great, but when it’s accompanied by the lack of access to the world that an infant might have, it loses its appeal quickly. Though, more than the boredom, I remember my dad and sister talking about what food they would get and from where. It all sounded so good, but given that I had tubes coming out of my throat, I wasn’t allowed to eat or drink anything in fear that I would aspirate it [inhale it, in a very literal sense].

 

When you can’t move anything except for your arm, and you can’t really control the motion of your arm when you move it, the options for things you can do are quite limited. Computers, phones, and books are literally and figuratively out of reach. No eating or drinking, so that’s out the window. Speaking of the window, yep, still nothing changing. Can’t talk because of the aforementioned tubes in the throat. It was going to be a long two days. The only thing left to do really was to study my room… Or what I could see of it. I distinctly remember there being laminated labels Velcroed to everything like a kindergarten classroom.

 

Somehow, I managed to pull through and survive two days of boredom (sarcasm). Two days after I arrived, I would meet two people who would become two of my favorite people during my time there. No offense to anyone else, there were just a handful of people who, because of commonalities in our personalities or just prolonged exposure, became particular sources of comfort or joy [I won’t be able to name them all here]. On that day, Emily, my nurse, and Mary, my physical therapist, came and helped lift me using the ceiling crane, into a manual wheelchair so I could be pushed around the campus. I wasn’t used to the transfer yet; the sling that goes behind you resembles a cartoon tooth, with the two legs of the teeth that are usually below the gum line going underneath you and up between your legs and then everything is attached to hooks up above. Not only does it feel pretty sketchy at first, but you also have the oxygen tubes leading to the trach and the feeding tubes that need to be kept out of the way and the oxygen source needs to be switched, which, at the time, seemed more significant than it actually was. However, this transfer would happen hundreds of times over my stay at Craig Hospital and even after with a portable version of the lift, and most of the time it was more amusing than anything else. I don’t know if it was just because enough time had passed and I was a bit stronger physically or if it was because of the chair’s ability to tilt back, basically dumping blood back into my head, but it was my first time being up in the chair and not feeling like I was constantly fighting to maintain consciousness.

 

Even though I could look out the window from the wheelchair, see everything that was going on outside, and feel the sun on my face, there’s something to the way sound travels outside that elevates all of your other senses; think of it like the difference between viewing a city through a window vs from an open balcony. Also, being outside and not feeling like I was on a physical timer, shifted the experience from one fraught with anxiety and sustained effort to a much-needed escape from existing solely within the walls of the hospital. Because of the portable oxygen source and other medical and safety concerns, you have to have a certified nursing assistant (CNA) with you to go outside. On my fourth day in the hospital, I finally got to go outside. They wheeled me out between East and West buildings of the hospital where there was a small courtyard with a fountain and a garden. The white noise from the fountain was just the right thing to mask the city noises. Also, being early September in Denver meant that it was pretty much the perfect temperature outside, and I could just sit with my eyes closed, let the sound of the fountain wash over me, and escape for just a few minutes before heading back inside.

 

As part of the orientation process, you receive a binder filled with information on spinal cord injuries. Not just some normal binder, but what felt like the largest size binder you could reasonably be expected to find without venturing online… ok, maybe not, but that’s the impression I got. It was an intimidating amount of information that covered just about anything you could possibly want to know [that we have reliable answers for]. There were different passes that let you get further away from your room with each successive level, and in order to obtain these passes you had to meet certain medical criteria and get through a given amount of the info in the binder. The first level pass basically allowed you to roam around the hospital outside of your room without a chaperone; they basically just need to make sure you aren’t going to just expire randomly and that whoever you are with knows how to problem solve any of the myriad of things that could come up, medically. I don’t have too many memories of the information in that binder, but I do remember a lot of it being quite helpful. However, one particular topic that I do remember quite vividly and that fundamentally changed me was pressure ulcers.

 

Now, thankfully, the first hospital I was in was knowledgeable and diligent in the prevention of these pressure ulcers, and because of this I was made aware of the topic. Reading through the materials those first days at Craig Hospital, it definitely seemed like something important, but a lot of things fit that bill at that time. It wasn’t until we got our video system working and I watched a video on pressure ulcers that shit got real. My sister and dad watched the video before me; my dad, who’s a doctor, didn’t seem particularly fazed, but my sister definitely did not seem entertained and gave me fair warning. I was expecting red patches or bruising with the top layer of skin broken, maybe a little bit of bleeding. I still have trouble getting over what I actually saw; gaping wounds, as if someone took an ice cream scoop and created a chasm, often exposing the bone beneath. Google image search “pressure ulcer,” if you ever wonder why I am constantly squirming around in my chair or doing weight shifts. If I feel the slightest bit of pain or discomfort, I start moving around as if they will amputate my leg if I don’t. Given the fact that my leg doesn’t work, it seems slightly odd to worry about, but if there’s one thing a handicapped person doesn’t want, it’s to become more handicapped. There is also the fact that there is the very real possibility that even a small pressure sore becomes fatal; the immune systems and healing ability of spinal cord injury patients can be significantly compromised… more on that later.

 

In just the 5 or so days that I had been at Craig Hospital, I had become much more tolerant of sitting up, so the thought of getting to try a power wheelchair was actually really exciting. Up to this point, I was entirely dependent on other people to move about, or even just to turn and look somewhere else. Also, the power chair had the ability to tilt the seat back and raise the legs, as many do, which let me do weight shifts where I could periodically take weight off of my butt for a bit and, as a bonus, it would dump blood back into my torso and head. It’s a wild feeling, it feels like someone is pouring energy back into your body; thinking and breathing become much easier, like having a portable charger for your energy, which still steadily drains when sitting upright. On that day, I was craned into my temporary manual wheelchair using the sling hanging from those ceiling rails, and they rolled me up to the 4th floor gym of the west building. As you pass through the double wide doors to the gym, the room opens up to reveal a number of islands of therapy mats on height adjustable platforms as you look forward or left. To the right, there was an open area with what looked like a set of gymnastics parallel bars, which are used to help people relearning to walk, along with a few other pieces of equipment. All along the far wall are windows which reveal a view of the Rocky Mountain front range south of Denver; looking out that window slowly turns from a temporary escape from the hospital to a painful reminder of a relationship, forever altered.

 

Anyway, I was rolled into the gym and we tried to find a spot where I could check out the view but also be out of everyone’s way. There were quite a few other patients in various states of disrepair, all either waiting for or working with their therapist(s). Sometimes it was one on one for the sessions, but other times there were whole teams of doctors, nurses, CNAs, and therapists working together to accomplish some goal. For that session, I was with just my OT Janessa, who is amazing and made even the most difficult and ego destroying tasks, something to just work through and giggle about. She was there to help setup and adjust the powerchair for me, which was a much more involved process than I could have imagined. First, there are obviously the dimensions of the frame. Along with that there are the dimensions and type of seat cushion and seatback, and there are a lot of choices. It doesn’t end there either, you have to choose and fit things like the foot plates, head rest, lateral supports, arm rests, joystick, guides for your legs, and on and on and on… If anything is off by enough, it can lead to discomfort, pain, pressure sores, or even just the general feeling that you don’t want to be in the chair. I found that with certain parts, such as the foot plate, if they are even slightly off, I notice a dramatic difference in my comfort; I can be a bit of a princess and the pea at times.

 

Being in that chair, however briefly, marked the first time I had really done anything for myself since the accident. I mean that quite literally, food, fluids, sitting up, turning, moving, going to the bathroom, etc. I was just a passive observer for it all. However, now that I was in this chair, with just a push of the joystick, I could move myself around the world again. Unfortunately for me, I would have to get out of the chair and give it back until the next day, when they could administer a little test to make sure I could control the chair and wouldn’t just come in like a 400 lb. wrecking ball.

 

The test to check my ability to control the chair, or lack thereof, was pretty simple from what I remember. We started by moving around the open space in the gym and then made our way through a series of doorways and hallways until we reached an empty hallway in front of some patient rooms. Once there, a series of small cones were set up on the floor as a temporary slalom course, and I was supposed to weave the chair between them without running them over. I was outrageously nervous despite the simplicity of the task. I think it was, in part, because I felt like they would take the chair away if I didn’t do well enough… which is literally the point of the test. I also thought that anything less than perfection was unacceptable, but also because it was just something that I thought that I should be good at, and I’d be embarrassed if I wasn’t. With a neck brace on, as soon as you get close to the cones they disappear from view, which fairly accurately represents trying not to run over people’s feet when you can see neither their feet nor your wheels. Either I put too much pressure on myself or the pressure is what made me perform, but I did fine. I zipped through the cones, staying close while avoiding running any of them over and got approval to use the chair. That would be my ride throughout my stay at Craig hospital until I began to trial other chairs when it was time to prescribe one for me. They don’t typically order chairs for people too early because it’s entirely possible you won’t need them. For example, while I was there, they ordered a power chair and a manual chair for a girl, but by the time they were scripted, approved, built, and shipped, she was walking and definitely didn’t need those chairs. Fun fact, those power wheelchairs are outrageously expensive, like, $24,000+ expensive.

 

One afternoon we were sitting in my room going over some random scheduling and logistics. My sister had handled just about everything outside of the hospital after my accident; from contacting my school, talking to my landlord, making sure bills were paid, acting as the point of contact for everyone, etc.  My dad handled basically everything on the medical side of things and also made sure everything was covered financially. Things weren’t quite so black and white, but combined, they made sure that I didn’t have to worry about anything outside of my immediate vicinity. I was only half listening to her run through everything that was supposed to happen that week, when I heard,

 

“… aaand I signed up for a dying class later this week…”

“…excuse me but… uhhh, I’m dying!?”

 

I knew things were bad but I was not aware things were that grim… Also, is whoever named the class, the same person who named an Alzheimer’s benefit event “A Night to Remember”?

 

As it turns out, I had definitely misunderstood what she was saying and she was signed up for a “dyeing” class. While I was in the ICU and at Craig hospital, she had been stress-knitting; I came out with no less than six new hats, two new scarfs, and a new pair of socks. However, she had also been buying ugly cashmere sweaters and unraveling them to repurpose the yarn. In this process, sometimes she would dye the yarn a different color and had simply booked a spot in a class in Denver to learn how to do this properly; not, as I had thought, a spot in a class to deal with my death. A misunderstanding that still brings me joy to this day.

 

On the topic of misunderstandings, it had been about two weeks since I had tried to speak using the Passy-Muir valve back in the ICU. In that time my family and the hospital staff had created a board with all the typical complaints and requests you might have. So, when something was wrong, they could just run down the list and look for a positive response to one of the options. I guess it might be similar to playing Pictionary, but instead of drawing anything they just stared at you. If the standard list didn’t work and I needed something else, the alphabet was organized in small groups of letters. I would pick a group of letters then the individual letter, and repeat this process until I had spelled enough of the word or phrase for them to guess what I was trying to say. It was finally time to give the valve another try and see if I could ditch the board. There is a video of this attempt, the video lasts all of 7 seconds. I was very convinced it wasn’t going to work, or had at least tempered my excitement from the last time, which is all too apparent from the look on my face. Given the length of the video, you might be inclined to think it didn’t work, but in reality, I was just caught off guard when I was able to speak that I had no idea what to say. The first thing out of my mouth was just a protracted “uuhhhhhhhh…” à la Tina Belcher (Bob’s Burgers).

“So, what do you want to say,” my sister asks.

 

After a few seconds smiling, looking up at the ceiling, all I could come up with was, “I have no idea.” Over two weeks of not being able to speak and I still had nothing of interest to say.

 

The issue with the valve is that it makes breathing slightly more difficult and I didn’t have the stamina to deal with that long term. It’s like having a pin hole in your beach ball, it’s fine in short bursts but eventually it will be too deflated to be useful. This means that you have to work up to using the valve full time and also that they would take it off at night. That little valve basically represents your ability to speak, your voice; it’s a really strange feeling having someone physically disconnect your voice, place it in a box, and put it in a drawer across the room.

 

Idle conversation, or talking just to talk, has never been my thing. Will I occasionally just say boring inane bullshit from time to time because I feel awkward? For sure, but it’s as painful for me to hear come out of my mouth as it is for you to hear it. So, it didn’t matter that it had been weeks since I spoke, I didn’t have anything to say, but when I was in pain and could finally describe exactly what my problem was, it was absolutely the greatest thing. I can’t speak highly enough of the nurses and CNAs who manage to figure out what patients are thinking or feeling consistently without anything more than yes/ no responses and eye contact. Fucking amazing people, they deserve better pay and treatment.

 

We, as a society, do an atrocious job of both adequately compensating healthcare workers and protecting them from the physical and verbal abuse that is levied upon them on a daily basis, especially the nurses and CNAs who interact with patients the most. We have this habit of just labeling these types of people heroes and then calling their sacrifice noble instead of actually compensating them. Think of all the jobs labeled essential during the Covid-19 pandemic, how many of those jobs offer a comfortable lifestyle financially?  But we called them heroes as they shouted for better pay and some protection.

 

In any case, the goal is to work up to a red cap [I’m not 100% sure if this is what they are called or if it was purely descriptive], which just seals off the tracheostomy tube, meaning you now have to inhale and exhale through your nose and mouth. It’s typically one of the last steps before the tracheostomy is removed, after gradually decreasing the size of the trach tube. Even with the red cap, they still take it away at night for a while before you are allowed to keep your voice 24/7. I still have that cap and the box they would put it in, my voice in a box. The thought crossed my mind that maybe they just took it away to get some peace and quiet… eh, even if, they deserve some peace and quiet… not that they actually got any.

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Kenji Kanagawa Kenji Kanagawa

Craig Hospital inpatient

When I got to Craig Hospital, I was still bedridden. I had my neck in a fancy adjustable neck brace called an Aspen collar (brand name) and had the tracheostomy tube going in my throat just below my Adam’s apple. As mentioned before, I had the feeding tube going in my abdomen just above and to the side of my belly button. I also had a PICC line in my left arm, which is just a long, thin, soft catheter that goes in a vein in the arm and ends at a large central vein near the heart, and is used to deliver medication for long term patients. I could use my biceps and shoulders to perform a sort of half ass wave, imagine a very drunk Princess Dianna if she just had no fucks left to give… At that point, I don’t think I had any sensation in my legs, or at least I hadn’t become aware of it yet, which may sound ridiculous, you would assume that any sensation would be detected immediately, and I’m not entirely sure how to explain how things like that can become lost in the lack of feeling. I think part of it is that I was hyper focused on the things that I definitely could feel or control, my brain hadn’t calmed down enough to have the mental space to detect subtle sensations.

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Kenji Kanagawa Kenji Kanagawa

Chapter 8 – The Harsh Realities of the ICU

At one point, I was back in the doctor’s garage getting rolled on my side, something about a bowel program? At this point I was really just a consciousness, ever so tenuously attached to a malfunctioning meat suit. Attached to all of those tubes and hoses that were feeding me, breathing for me, and monitoring me, I was just along for the ride. Oh wait, no, I think I can feel my ass hole? Is something… Going in? Is this that spinal cord test again, like the first time I broke my neck? Did I consent to this? My instinct is to recoil and pull away, but I can’t move. Oh man, I think I’m shitting myself. All you can do is let go of the idea that you have control over anything at this point, and you have to just ride it out.  The idea of being a completely passive observer, where the only expectation of you is that you stay alive wasn’t the worst all negative, provided it wasn’t going to be permanent. In this case, everyone else involved was just happy that I was finally shitting again; with all of the opioids I had been given, it had been days since anything had come out, something I was blissfully unaware of. It’s hard not to feel shame or embarrassment even though there is absolutely nothing you can do about it, which applies to a multitude of different situations beyond just shitting yourself as a paraplegic or quadriplegic.

 

The majority of what I felt during my time at the ICU was sheer panic. At that time, everything seemed terrifying, even being left alone for a few minutes felt like playing a high-speed game of Russian roulette; with the silence growing louder and louder with each passing second. Part of this stems from the fact that on numerous occasions, I found myself choking on my own spit or secretions; and while you are laying on your back without the ability to move, turn your head to the side, or breathe forcefully, it felt like the discount version of waterboarding. I say the discount version because, at one point when I was convinced my airway was clogged and I was going to choke to death, my dad calmly pointed out that if I calm down and try to breathe more steadily and deliberately, I can get enough oxygen to not pass out until they could come suction my lungs. One of the most difficult things I had to learn while in the hospital was to relax and trust everything to people who were virtually strangers. The hard truth is, even if things are really bad, it is exceedingly rare that they would tell you, unless they need you to do something; in any case, the anxiety or panic will pretty much never be helpful, and when you are a new high-level quadriplegic [high-level refers to the position up the spine, the higher you go, the less function you have], it’s not like you are even capable of doing anything other than calming the fuck down. It’s rarely pretty, but sometimes you have to stare at the back of your eyelids and just let go, floating into that dark space, while you just concentrate on the most basic survival needs and let Jesus take the wheel… provided that Jesus is a Latino guy with a medical degree.  

 

In terms of waterboarding, I’m pretty sure no matter how much you relax, it doesn’t ever become manageable, which is knowledge I gained over all my years of not being in the military. Not to just casually mention my lungs being suctioned, this procedure, which I would become uncomfortably comfortable with over the next few months, involved taking a catheter and attaching one end to a catch can connected to the vacuum line from the wall and the other end would find its way down my throat and into my lungs. Whoever was doing it would then fish around in my lungs for a bit, trying to suck up as much as possible. Normally, as you breathe, the air is warmed and humidified by the nose and mouth. Without these perks, the lungs become irritated and secretions become thicker and more difficult to clear. This type of suctioning would happen pretty frequently, to the point where eventually I was able to “breathe” while it was happening. 

 

Sometimes I was fully aware of where I was and my situation, while other times I was off in some dreamland, with my brain grasping at little bits of reality and then weaving them into its own little story. A red light here, a mention of Thai food there, and suddenly I was in that Asian high rise; an inclined hospital bed and a screen and I was in an arcade. In one of my more lucid moments, I remember being awake at night in the hospital with my friend Tyler who was keeping me company. She was one of the first people who got to the hospital after my accident and was there throughout, keeping me company and helping with everything. That night, I’m not sure if it was because I actually felt hot or was just desperate to feel something, a theme that would only grow from this point, but I remember desperately asking for an ice bath. There was something particularly relieving about feeling or having those ultracold cloths on, it was like they were physically wiping away the anxiety and panic.

 

One odd side effect of breaking your neck is that you can lose the ability to sweat, meaning you have no effective way of dissipating heat. In retrospect, a fair amount of my anxiety was probably me just feeling too hot, but not being able to recognize the sensation yet. There are a whole variety of things that I can’t feel or sense directly but that set off reactions within my body that I am able to sense; however, it’s incredibly difficult to reverse engineer the cause of these disparate, ill-defined, and fleeting sensations. Try to imagine all the feelings that are involved when you are too hot, except your brain doesn’t register any of it as “hot,” you are just suddenly an ever-shifting combination of uncomfortable, anxious, exhausted, irritated, etc. This would be the beginning of a long series of discoveries on my body’s inability to regulate temperature, and the particular sensations and indications I would get that my body temperature was leaving the ideal range. But more on this later. 

 

I had a number of visitors who came and saw me in the ICU. To start, I wouldn’t really call Tyler a visitor; she was there from the start, and was there for hours helping with everything… The best way I could describe it is to say that if someone is there with you and the doctor says they are taking you for some medical procedure, they typically tell visitors to leave, and allow a different group of people to be waiting for you when you come out. That’s not to say that I appreciated the visitors any less. It was good to see friends and get little updates about the outside world. I can’t speak for everyone, but if you’re dealing with someone who is antisocial by choice, it’s okay to show up to show that you care and then leave. I appreciated the visits, but also quietly appreciated the brevity of the visits. Besides, most people were clearly uncomfortable, which is totally understandable

 

My friend Alex and his girlfriend were actually the first two at the hospital, he must’ve been the only person I could even think to contact who might be able to get a hold of my family. I’m pretty sure he was the one who contacted Tyler. Even though my memory is generally not the strongest and that time was particularly confusing, I still remember all of those visits. While I was in the ICU, and all throughout my recovery, the outside world just kind of melted away. Things that weren’t directly in front of me were dropped lower and lower on the priority list. Not because of some conscious effort but because I simply had too much to process. I imagine it’s similar to a baby with their lack of object permanence, except they probably don’t feel guilty for all the neglected relationships and friendships. However, having visitors was always a mixed bag; it was great to see people and get the distraction, but it also came with the anxiety of not wanting to shit myself in front of them (something which was beyond my control, aside from deciding not to see them). Also, there is something particularly sad or painful about seeing the pity on their faces. It also seems like it’s something next to impossible to hide; it’s on their face, in their voice, in their body language… Maybe I just imagined it all? Not likely, I’m sure if I saw my own reaction as I look back on the pictures from when I was in the hospital, I would recognize that same sense of pity. And why not? It was a pitiful sight.

 

Previously I wrote about experiencing diet waterboarding, as it turns out, I also remember very intense and clear flashes from an experience that could only be described as medical grade waterboarding. I remember hearing the description of what was going to happen and having a slight sense of panic, “you going to do what? Get the fuck out of here… oh shit, oh god… errrr, fuck… ok, no choice, here we go?” For whatever reason, I demanded that my sister record the experience on video; an idea the medical staff were, justifiably, not gung-ho about. They prepped my sister on what was going to happen, and instructed her to, by no means, intervene at any point, regardless of how bad things looked. Which seems like a fair warning given the nature of the procedure.

 

They were essentially going to perform a lung lavage to clear the secretions that were building up in my lungs due to the pneumonia I contracted between the two surgeries on my neck. To do this they would inject saline into one lung to break up the secretions and then suction it out with the help of a bronchoscope, think tiny camera on the end of a 2 ft long hot dog, sans bun of course. As you can imagine, alternating between having salt water sprayed in your lungs and having a 2 ft long hot dog camera/ vacuum shoved down your throat and into your lungs is… well, brutal. Going back and watching the video, there is a point during the procedure where my eyes open wide and I begin to struggle a bit more, I’m fairly certain this corresponds to one of the flashes of memory I have. It seems clear that I’m more awake than I am supposed to be when the doctor asks if they’ve given me the maximum amount of fentanyl already. And yep, had the maximum but the procedure was going to continue; a situation which caused visible guilt and empathy on the faces of the doctor and nurse... I still struggle to not cry thinking about the procedure. I have been told that I was definitely not supposed to remember any part of the experience, and given how poor my memory is, it seems odd that my brain would just say, “nah, that’s a memory I’ll hold on to forever!”

 

When tardigrade go into their cryptobiotic tun state, they drop their metabolism to 0.01% of normal and reduce their water content to 1%, which they accomplish with the help of specialized proteins [intrinsically disordered proteins (IDPs), tardigrade specific proteins (TDPs), and a damage suppressor protein (dsupp)]. In that tun state, their tiny little brains are shut off, meaning they don’t register the abuse they endure in that time. All of that is a complicated way of saying, that was a moment I could have been more of a tardigrade, in a literal sense.

 

On the opposite side of things, you would think that getting to go outside would be a positive experience; and it definitely was nice soaking in the sun, feeling the warm breeze scented by the autumn grass, and seeing the mountains again. As cliché as it all sounds, being out there did make it feel like it was easier to breathe, “feel” being the operative word, as my actual blood oxygen saturation levels were probably steadily declining… 93, 92, 90, 88... It’s an odd dichotomy to have a place where you want to be so bad but to feel like that place is steadily draining your life force. It felt reminiscent of an old piece of electronics, where you would unplug it from the wall and take it outside and you just watch as the battery slowly drains away before you have to go back inside and plug it in. After only a few short minutes, it was time to plug Kenji back in. In any case, there was also probably something to being able to see the outside world but to know that I was never going to interact with it in the same way again that made me want to go back inside after a while.

 

Even when I wanted to do something like go back inside, I wasn’t really able to communicate any of it. Because the tracheotomy is located below the vocal cords and a cuff is inflated to not let air past, air couldn’t pass over the vocal cords to vibrate them, meaning I was unable to speak. Wouldn’t you know, somebody thought of that issue and created what’s called the speaking valve. These speaking valves are simple mechanical one-way air valves which are placed over the tracheotomy hole after deflating the cuff. They allow you to inhale through the valve, but stop the air from going back out when you exhale, which directs the air over the vocal cords allowing you to speak… at least, that is how they were supposed to function. My first experience with one of these valves was during a PT or OT session where, with an abundance of assistance, I was sitting up in the bed, which is a position with a fairly definitive timeline, much like being outside, I was unplugged from the wall again. When my therapist explained what the valve was and how it worked, I was pretty excited to be able to speak again and communicate things like “oh hey, my head itches like crazy, please scratch it,” rather than just sitting there hoping somebody randomly guesses that your head itches. *Extracurricular activity - next time your face or head itches, don’t do anything about it, is it going away? Is it getting better? Will it ever get better? *

 

Anyway, back to the speaking valve… She placed the speaking valve on my tracheostomy tube, I inhaled, preparing to finally speak again. She instructed me to try a hum, it seemed like a foregone conclusion that I would be able to just speak like normal… “um, Ma’am, I think you underestimate me.” Oh how wrong I was, I suddenly realized I couldn’t exhale, I didn’t have the force from any of the muscles in my torso to push the air out. Also, given that I had just inhaled, inhaling again wasn’t really an option. Had I not experienced the myriad of different ways of not being able to breathe, the panic would have been much worse, but the sharp drop from thinking I was going to speak to knowing I can’t breathe still set off those panic bells. It wasn’t meant to happen that day, they said they would try again, but I’m pretty sure I refused all subsequent attempts while at the ICU.

 

I remember overhearing some of the staff talk to my family and telling them about Craig Hospital in Denver. Nothing they were saying was really registering and I wasn’t putting forth the mental effort to try to understand. A while later, a woman arrived who was the patient intake coordinator, she sat down and explained what Craig Hospital was and why it might be a good fit for my rehabilitation. She brought a brochure with her that had pictures of the hospital campus, former patients who had recovered, and other random information about the hospital. I remember having mixed feelings about seeing people who had recovered. On one hand, it offered that bit of hope that you might also make this dramatic recovery. On the other hand, people love to show off those who made a full recovery and look at the rest of us like we're just not recovered enough. My doctors had given me a very realistic picture of what had happened to my neck and how that was possibly going to play out. I was well aware that I was likely never going to walk again, but also knew that I would only really find out over time. Throughout my entire experience, I don’t recall anyone ever saying “you’re never going to walk again” or “you will walk again,” which is honesty something that I, personally, greatly appreciated.

 

It was clear that Craig Hospital represented my best chance to recover as much as possible and make the best use of what ended up coming back. Something about the brochure made it seem like Craig Hospital had a ‘community college with dorms’ vibe. The schedule sounded pretty aggressive in terms of what time you had to wake up, eat breakfast, and then start therapy and classes. It’s funny that something like waking up early could almost deter me from the rehab that might help me walk again. Obviously, my family had done a ton of research and basically the entire hospital staff recommended Craig Hospital; however, for me, it was as if I chose what college to go to while blackout drunk, based on a single brochure.

 

After the first of the two surgeries, I had a feeding tube running up my nose, down my throat, and into my stomach. I was too out of it to really be paying attention to what delectable slurry was going in there or with what frequency, but I do remember the sensation of having a tube permanently taped to my face, which, as you can imagine, was rather unpleasant. At some point it was decided that it was time for a more long-term solution before I transferred to Craig Hospital, and given that I wouldn’t be able to eat or drink anything as long as I had the trach in, this meant surgically placing a feeding tube straight through my abdomen to my stomach. I’m not sure if this was even a thing that I needed to decide or if it was just a given that it was happening but I definitely didn’t have any objections.

 

If I remember correctly, my surgeon was an Asian woman, in fact, I feel like the majority of people involved in the surgery were women. I only mention this because I have always felt more comfortable with medical professionals who are not straight, white, males. Part of this comes from a general discomfort with being around groups of guys. The chameleon nature of my personality meant that I would try to blend in, usually overcompensating, and it was extremely uncomfortable. That’s not to say that I am any different than any of the guys I’m talking about, I just mean that when I am in a group of guys my personality shades in a direction that makes me uncomfortable, in an attempt to seem normal. I honestly believe that I am capable of significant empathy and “good,” as well as [shameful/ embarrassing/ horrible/ shocking/ dreadful] depravity and “evil.” It’s probably why I’m almost always confused when people say “I just don’t understand how they could…” in response to some terrible incident. I might think something is fucked up, but I typically still understand the motivations involved… though, I guess that is all dependent on how you define “understand” in this context.

 

[Now, for a little tangent,] I concede, the real champions of blending in are cuttlefish, which use 3 types of cells to change color: Pigmented Chromatophores, little elastic sacs called cytoelastic saccule, which are filled with pigment granules. 18 - 30 radial muscles are attached to each chromatophore and are able to change the size and shape in order to control translucency, opacity, and reflectivity. This allows for active conscious control of color displays [yellow/orange (the uppermost layer), red, and brown/black (the deepest layer)].; Iridophores, chromatophores that utilize structural color to produce iridescent colors. Rather than producing color by selectively absorbing certain wavelengths of light, iridophores use stacks of plates of guanine based crystalline chemochromes to create a diffraction grating. The orientation of the stack, the thickness and tilt of the plates, the spacing between each plate, as well as the number of plates in each stack determine the perceived color. The iridophores are also able to polarize the reflected light, which they use for mating displays and possibly communication. Cephalopods have a rhabdomeric visual system, meaning they are visually sensitive to polarized light; and Leucophores, which are also structural reflectors but they utilize a guanine based crystalline purines to reflect light. However, their organized crystal structure works to reduce diffraction; this means that the leucophores act more like mirrors, reflecting the color of the light source. Towards the surface, they reflect mostly white light, but as they travel deeper and more frequencies of light are filtered out, that shifts toward the red end of the spectrum. Cuttlefish are also able to change the texture of their skin and are much smarter [research suggests they can count] and more interesting than chameleons. It’s all a bit ironic how complex their color display is, given that they are actually colorblind... wait… what the fuck was I talking about? Oh yeah, the other part of my comfort in having an Asian female surgeon comes from knowing that she probably had to work harder, be smarter, and do better than her straight white male counterparts to get to where she is.

 

I remember being rolled into the operating room, at this point a familiar feeling, and watching as the “dentist office spotlight” slid overhead and dominated the view. The anesthesiologist walked me through the procedure for adding the anesthetic to my IV to put me to sleep. Injection went in. Counting back, 10, 9, 8, 7, …, 6, … 5, …, 4, 3, 2, 1… wait, was I supposed to make it to 1? A few surprised looks and a few giggles. OK… Let’s try that again, Injection went in. 10, 9, 8, 7, …, 6, … 5, …, 4, 3, 2, 1…  Big grin on my face… ok, I know I was supposed to go out on that one. I’m not sure how many times we tried but at some point, I asked if I could just stay awake and get local anesthetic, which honestly made me giggle; the thought of medically numbing an area I already can’t feel. After I explained that I had been awake for a previous knee surgery that I was allowed to watch, and a few “you sure?” questions from concerned faces, they decided to let me stay awake. I recently read an article that strongly suggested marijuana users tell their surgeons because a study indicated that they may require up to 10x the amount of anesthetic to “stay asleep” during the procedure; that… is a lot… but could explain a few things.

 

Nothing of note really happened during the surgery, I couldn’t watch directly this time so it was mostly small talk. Had they not been so nice, I probably would have quickly regretted asking to stay awake. I’m not entirely sure why but the experience always makes me smile when I think about it. I much prefer the entertainment and education of being awake during the surgery to just waking up and fighting through the fog with everything being done. 

 

I guess I should mention that part of the reason for being in the ICU for as long as I had been was because I had to have two surgeries to fuse my spine; one going in through the back, leaving a long scar down the back of my neck, and one going in through the front, leaving a much smaller scar on my throat, just below my Adam’s apple. However, in between the two surgeries I managed to catch pneumonia, which meant they would have to wait until it cleared before they could continue. Now, without the ability to sweat and control my body temperature, the swings between freezing and burning felt aggressive. Additionally, the combination of a complete lack of use of any of the muscles in my torso and the tubes in my throat made clearing anything in my lungs next to impossible without significant help. Pneumonia, being a lung infection, causes inflammation in the lungs, fever, chills, and crucially, causes the air sacs to fill with liquid or pus. This usually causes a cough, but when I went to cough, I would simply get a tiny breath outward that was entirely ineffective at helping me stay alive.

 

There were two main methods that I remember being used on a consistent basis to get me to clear the buildup in my lungs. The first was the catheter snaking down the hole in my trach and into my lungs that I mentioned before. The other, somehow, felt more aggressive than the suction and is called a quad cough and involves someone timing a forceful push on your abdomen to simulate the actions of the abs and diaphragm to squeeze a bunch of air out quickly. It rarely worked on the first try, meaning you had the pleasure of having someone rapidly rearrange your internal organs multiple times in short succession while you attempt to time a cough to clear your lungs so you can breathe again. The methods both relied on the secretions in your lungs to be fluid enough to be removed, which was not always the case. When things were really bad, they would do the aforementioned lung lavage but in between those times, one of the therapies they used was chest physical therapy. For me, this meant I was put on a special bed that vibrated rather violently to use percussion to shake the secretions in the lungs loose. When you picture your neck as a bunch of random bits loosely held together, the shaking was not only uncomfortable but also turned the anxiety knob up a notch. To make things worse, because this was all in service of clearing that crap from your lungs, the whole thing comes with the understanding that they were also going to suction your lungs afterwards; so, the unpleasant experience was always just the appetizer for an even more unpleasant experience.

 

When I finally stabilized after the surgeries and all the preparations were complete, it was time to transport to Craig Hospital. I’m not sure if they were just the only ones available or if it’s standard for the transport, but I was getting transported by the helicopter paramedics, which I found endlessly fascinating. Instead of wearing the normal paramedics uniform, I remember they were wearing dark blue jumpsuits with orange lettering with a military style flag patch on the arm. Across their backs, orange letters spelled out “fight for life.” They transferred me to their super fancy yellow stretcher which had a little platform over my feet for all the monitoring equipment and rolled me outside to the kind of old school looking dulled orange ambulance. On the way out I remember them showing the items that they had taken and held for me when I came in, including a couple beers and a 1.5-foot-long machete, which I used to carry with me everywhere. It was a black machete strapped to the side of a black hiking backpack, it seemed less weird than it does now that I’m writing it out. Once we were in the ambulance, I remember starting to play that little game where I looked out the window and tried to guess where we were. The only problem, we were starting in an unfamiliar place and going somewhere I had never been. I basically had no idea where we were at any point, and to be honest it wouldn’t be until months later that I had a sense of where I was geographically. For me, in situations like this, where something extreme is happening locally, my world shrinks and everything outside gets excluded from processing. On one hand this definitely helps isolate issues and helps you hyper focus; however, in addition to ignoring people, places, and events outside of that bubble, it is severely disorienting when trying to leave and re-expand that bubble to include the entire world again. I don’t remember a whole lot from the ride, probably because I didn’t recognize anything beyond, “oh hey, that’s a tree.” It felt like a much milder version of that kidnapping victim who is locked in a trunk and is trying to figure out where they are based on the subtle clues: 20 minutes on the highway, exited the highway, turned right, smells like fresh asphalt, 5 min straight… OK, by my calculation, we are… still in Colorado? Maybe? Once we got to Craig Hospital, it was straight inside and up to the room.

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Kenji Kanagawa Kenji Kanagawa

Chapter 7 – Disorientation on a whole new level

I woke up in a hospital bed, in a high-rise building somewhere in southeast Asia. To my left was the entrance, I couldn’t see this area too well, the majority of what I could see consisted of a rather boring neutral colored wall. To my right, however, I could see a little step up leading to a balcony with a sliding glass door. Out of the window was the skyline of some major Asian city, which I could only determine from the particular architecture and building tiles used. How did I get here? What the fuck is happening? Where exactly am I? I start to hear familiar voices… Through the fog I could hear my sister and my dad. I could feel my shoulders relax, metaphorically speaking, because not only was I paralyzed, but I was on a metric fuck-ton of painkillers and sedatives.

 

Well, it turns out I was still in the ICU at Boulder Foothills Community Hospital and not in some Asian high-rise apartment. Why did I think I was in Asia somewhere? Well, I remember overhearing a conversation between my dad and my sister about going out to get food. My guess is that they discussed Asian food and my brain built a whole scenario around the availability of that food. The cityscape I was seeing? Well, that was either a view out the window of the hospital or I was simply looking at all of the monitoring devices and flashing lights of the machines I was connected to.

 

Every time I woke up, I had no recollection of the things that had happened before, so certain realizations happened multiple times. My already shit memory had been further reduced to that of a goldfish… though, for scientific accuracy, goldfish memory is not as notoriously bad as has been popularized; rather than three seconds, they have memories which can persist for at least six months.

I closed my eyes, relaxed, and let the sedatives take over as I slipped down another level away from reality. When I opened my eyes again, I was being moved; there were people all around, something significant was happening. I couldn’t quite focus long enough to figure out who was doing what and why, so I pulled back and just tried to take in my surroundings. Whose garage was I in this time? I got the distinct impression it was the doctor’s house. Also, this is definitely not the first house we had been to. Somehow, moving from house to house didn’t seem so unreasonable. I mean, where else would we be? I was just glad the garage door was open so I could see outside. Was this all just my brain trying to escape the setting of the hospital, presenting me with the reality that was more familiar or comfortable? A couple months later, on the bus during my first field trip from the hospital, I got to talk to two other guys who were recently paralyzed and we all realized we had the same house to house or garage to garage hallucination. As it turned out, we shared a lot of very similar hallucinations.

 

When I was younger, I did my fair share of hallucinogens, including LSD, LSA, psilocybin [mushrooms], peyote, DMT, and so on and so forth. I was 11 years old in a cabin in the woods on a school trip [pun intended] the first time I remember hallucinating. Because of my anxiety issues, I was taking Benadryl [diphenhydramine] to help me go to sleep during the 6th grade camp trip, a week of activities somewhere in the woods of Missouri. The thing is, if you take a bunch of Benadryl and you don’t fall asleep, reality just seems to slowly morph into a dreamland. In the middle of a rather violent pillow fight that felt more like a fight where pillows were present than a “pillow fight,” I realized something was off. A short while later when we were outside, the sensation grew; now my body felt tingly, not a physical sensation, but more of a mental or visual sensation; like a mild form of synesthesia, where certain senses get crossed and someone may see sounds as colors or ascribe certain shapes to different tastes. At the time, I had no idea what was happening but I just knew that I couldn’t tell if I was awake or asleep. Everything was too clear and too full sensory to be a dream; but at the same time, this was definitely not a reality I was used to. It was certainly no mind-bending trip, everything just felt… off. Ironically, that growing confusion caused an anxiety attack and I was sent to see… the nurse?

 

My first intentional trip was in high school one summer. I was at work as a lab assistant in a medical lab when I got a call from my girlfriend at the time asking if I wanted to trip with them after I got out. I wasn’t sure, I was actually pretty apprehensive, but I agreed and planned to meet them in Forest Park, a huge park in the middle of St. Louis; As every St. Louisan will tell you, “It’s bigger than Central Park in New York.” When I got there, without much further consideration, I ate a few tabs of LSD and sat back and waited for the show. However, 30ish minutes later, when I thought the acid wasn’t working, I ate 1/8th of an ounce of mushrooms; I realized shortly after swallowing the mushrooms that the LSD was working just fine and I was in for a double feature, one that would involve me walking through the woods having a conversation with the Good Luck Bear [A stuffed Care Bear]. I’m not sure what they said to me but I remember just thinking, “nnnnope…” and flinging them deep into the woods; something I kinda wish I could do when sober talking to actual humans, not just stuffed animals.    

 

The difference between the plethora of times I took hallucinogens and the hallucinations I had in the hospital, was that I was only sober for brief moments during my two-week stint in the ICU. All of those anchor points to reality just melted away and my brain was left scrambling trying to make sense of this new reality, where anything was possible. Having video and pictures of those times is helpful, but the hallucinations from the ICU seem just as real to me as those actual images. In a paper in the Journal of Psychiatry & Neuroscience, Dr. Patricia Boksa highlighted that one possible mechanism for hallucinations [mostly auditory] was an increase in activity in a particular region on the brain, creating internal stimuli, coupled with a reduced ability to distinguish internal and external stimuli. Basically, your imagination or internal dialogue ramp up, but the line between your imagination and reality becomes all woobley, to put it technically.

 

Whenever I took hallucinogens, I always knew where the hallucinations were coming from, but in the ICU that line just disintegrated; my brain quickly went from Piet Mondrian to Jackson Pollock.

 

One night I woke up in what looked like a high-tech gaming arcade, with banks of reclining chairs adorned with overhead screens facing another beige wall which had a door on the far-left side and a glass window in the middle. The hallway just beyond it was lit up with that slightly off white from fluorescent tubes, and occasionally I would see a doctor or nurse passing by. My brain must not have enjoyed trying to justify so many doctors and nurses being at a gaming arcade and so I remember coming to the conclusion that I must be in some sort of overflow room of the hospital. I slowly started to realize that I had spit building up in my mouth and due to the tube in my throat I was unable to swallow. While I was awake, I would simply try to get someone’s attention and they would suction the spit out of my mouth. However, this time, I wasn’t supposed to be awake and so there wasn’t anyone around to help. I started running through the options of what I could do, only to realize I didn’t really have many; I couldn’t spit forcefully, I couldn’t turn my head to the side to spit because of the neck brace, couldn’t swallow… Even with the machine breathing for you, spit slowly building up in your mouth begins to induce a sense of panic. After hitting what I thought was the call button for the medical staff [who knows if it was real or something I made up] about a million times and failing to get anyone’s attention, nearly in tears, I went with the only option which was basically to weakly spit it out and let gravity drag it shamefully down my face.  Which isn't really a big deal when you are also probably regularly shitting yourself, but when one of the last bits of control you have, not drooling down your face, is taken away… it doesn’t feel great. It feels like a little twist of the knife as I could only feel a very small portion of my body, 90% of which was just the sensation of pain, and now I had just turned at least 5% of the remainder of conscious sensation to “oh… gross…”

 

Another night, I remember waking up at some point, my sister was asking what I wanted her to read to me. She ran through a list of options, likely what was available on the Kindle. I was in such a panic that anything even remotely complicated or new felt like it induced more panic, which may be why “they” say that people with high anxiety tend to rewatch or re-read content, satisfying that craving for familiarity and predictability. Then, she mentioned Roald Dahl’s The BFG, The Big Friendly Giant, and it immediately triggered something in my brain. “That one! That one! That one!” My brain screamed, but I’m sure it only came out as a mild whimper and a head nod, as that is all I was actually capable of. Something about the familiarity of the story brought me back to my childhood and made me feel safe; all, I’m sure, in some way linked back to my mother reading me the story when I was a kid.  This one moment, surrounded by delusions and hallucinations, stands as a moment of surprising clarity. I know that I had a painfully clear understanding of my situation and where I was, and I can still feel that sense of panic and helplessness. I remember my sister getting to different parts of the story [particularly the frobscottle soda, with its sinking bubbles that I think could probably be made with Xenon gas, as it is quite heavy and unreactive] and my brain being able to latch on to something familiar, something comfortable. I’m sure I was in and out of consciousness over the course of the story, but the overall calming effect was significant.

 

I opened my eyes and it was dark in the room, there was no real context for where we were, but I got the sense that I was in… the hospital? Though, if this was a hospital, I started to question what all those animals were doing on the far wall. There were at least two sugar gliders, a raccoon, a rabbit or two, and other small to medium-size Rodentia, all just hanging out on top of a cabinet against the far wall with the sugar gliders climbing up the netting against the wall. I remember watching them for a significant period of time, I don’t know how or why, but in some way, they were vaguely comforting. They weren’t doing anything in particular, and I couldn’t interact with them, but I felt better with them there, maybe I just didn’t want to be alone. At the time it just seemed logical, they were meant to be there.

 

I remember turning my head just to the left… well, as much as I could while in that neck brace, and in the other room there was Boulder native climber Sasha Digiulian. She had somehow injured herself and was there for rehab, my dad was out there helping with her rehab so she could get back to competition. My attention would go back and forth between the small community of animals gathered in my room in the distant vague notion of my dad helping somebody in the other room. Obviously, neither she nor the animals were ever there, and while my dad is a doctor, he certainly does not specialize in sports medicine or rehabilitation. However, in a strange twist, exactly 5 years after I was in the ICU there, to the day, she ended up having surgery at that very hospital for an injury.

 

At this point the darkness was starting to lift and I was at least aware that I was in the hospital, but my brain was still struggling against the sedatives and painkillers, trying to keep up with reality. The whole thing felt like trying to read station signs from a speeding train. Next time you’re in the car on the highway or on a train, look around outside, you can see where you’re going and things seem to approach a comprehensible speed, think about all of the things that you can see, read, and just understand. Now, turn your head so you’re looking directly out the side window of the car and put your hands up as blinders to block your peripheral vision. How much can you see, read, or understand? All you can see is that moment, no concept of past or future or logical progression. Things just became a blur of meaningless half recognizable flickering images.

 

Lying on your back in the hospital, there isn’t much to look at. On the ceiling, there were these large silver railings that act as the overhead supports for a sling that allow the hospital staff to lift the patient and slide them around the room, typically to transfer from the hospital bed to another seat/bed.

 

It was one of the only things I really had to look at, but I just kept asking myself, “why are there so many hamsters running on top of those beams? Where did all these hamsters come from? Was nobody else in the hospital concerned with their presence? Unfortunately, when lifting your arm is the only movement you can accomplish, your face is packed full of tubes, and you are heavily sedated, communicating your concern for the number of hamsters is somewhat difficult. All I could do was stare at my sister, who seemed to be able to preemptively understand what I was trying to communicate most of the time, with a look of “what the fuck dude? Hamsters? Nothing? We’re just not gonna do anything about the hamsters?” I must’ve been aware that I had a trach tube in and aware of the large hole in front of the C collar, because I remember being particularly worried about getting hamster hair or droppings directly into the hole in the front of my throat. I remember being perplexed that no one had bothered to cover the hole, but I didn’t have the ability to get either hand up past my collar bone, so there was nothing I could do about it.

 

Continuing the animal theme… I can’t remember exactly who brought them, but I found myself in the company of a stuffed owl and a stuffed penguin from the gift shop. Now, had I not been fueled with IV sedatives and painkillers at night, they would’ve made the perfect companions. Instead of being the proverbial safety blanket they were intended to be, they turned out to be agents of pure terror; the two sets of giant white eyes, unblinking, staring at me from the far side of the room, encapsulated by the two shadowy silhouettes. Every time I would open my eyes, there they were, just waiting for me to go back to sleep so they could continue whatever maniacal plot they had in the works. And it wasn’t as if I could just turn my head, the C-collar had my head locked in place, leaving those piercing eyes constantly in my peripheral vision m  , à la A Clockwork Orange. Needless to say, at some point I apparently demanded they be placed face down, which I’m sure confused and amused those involved.

 

My hallucinations would gradually decrease in severity and frequency as I was slowly weaned off of the sedatives and painkillers. Thinking back, those hallucinations were as real, if not more real, than any other “memory” that I had at the time. Many times, I have a clearer, more vivid memory of the hallucinations than I do of what was really happening.

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Kenji Kanagawa Kenji Kanagawa

ICU

I have spent countless hours in tears trying to write everything that follows. Overwhelmed by both ill-defined pain and sadness, as I try to sift through foggy memories, which feel dissociated from time. Why am I crying this time? Am I sad? Angry? Or do I just feel some sort of hollow pain, like my chest is caving in? It’s complicated because the same memory can cause a different emotional reaction every time it comes up. Sometimes, your understanding of a situation changes over time, shifting your emotional response to the memory; other times, you simply focus on a different aspect of the memory, triggering a different emotional response. In reality, those memories carry a constantly evolving mix of emotions, where generally positive memories can also be the harbingers of anger, sadness, or pain. Conversely, generally negative memories [such as those from a bad relationship, injury, loss, or misfortune] can have positive elements inseparably threaded within them, creating a bit of an emotional schism. The more you talk about it and work through it, the more you start to understand what specific parts of the memory trigger the different emotional responses; that’s not to say you will ever be able to fully make it make sense, but that’s why you get a therapist. It’s like having a positive memory about an abusive ex; at first it just feels fucked up and confusing but eventually, you hopefully get to the point where you understand what it was that they did that made you feel happy so you know what to look for in a more deserving partner and also understand that that ex is a POS not worthy of your time. In my case, it’s about allowing myself to find and enjoy the little happy moments, experienced during a highly traumatic period of my life.     

 

Regardless, each time, I have to fight to breathe normally and stop the tears because, as it turns out, voice-to-text programs have a hard time understanding a literal sob story. To my benefit, as quickly as I’m overcome by those negative feelings, they fade away and I can suddenly see things as more logical and manageable. The thoughts, memories, and feelings that, just a minute ago caused me to cry uncontrollably, now seem to make me laugh. There seems to be two predominant sides to my personality throughout recovery: the sad, scared, and damaged person who doesn’t know how long we can last; and the happy, optimistic, and logical person who can endure just about anything. Now, it wasn’t always just one or the other with a distinct switch between, but rather two sides of my personality playing tug-of-war for control over my outward personality.

 

Anyway, it’s time to do my best to morph into my tun state [cryptobiotic state used for self-preservation], shutting down all but the most essential functions, and see just how much of a tardigrade I can actually be…

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Kenji Kanagawa Kenji Kanagawa

Chapter 6 - One trivial decision

I remember sitting on the couch watching League Of Legends [a computer game] on my laptop and debating if I should just stay home or if I should go down to my spot, just up Boulder Creek past Eben G. Fine Park; It’s almost comical how vividly I can remember that moment, given how bad my memory can be. After a short, somewhat awkward, period of deliberation I said, “fuck it, I’m going down there,” and I loaded my backpack with some extra clothes, my camera bag filled with cans of beer, and my ultralight packable hammock, hopped on my bike and took off towards the creek.

Within minutes, I was on Boulder Creek path cruising up the two-lane bike path. To this day I can still remember the smell of the trees, the grass, and the creek and still distinctly remember that particular weight of the pedals on my fixed gear bicycle; perhaps because it was one of the last times I would remember having actual control over my body.

Given that it was late August and the students of CU Boulder had yet to return (Boulder is a town of about 100,000 people, 30,000 of which are students who leave during the summer) there were only a few people up at the park, and even fewer people as you continued up the creek and into the woods. My favorite spot was just past a small sandy area where larger groups of people/ families typically hung out. The spot was just past all of the commotion, but before the area where younger groups hung out, smoked, and drank.

To hang my hammock up I would climb up a small tree that laid against a large (oak) tree which was probably 2.5 – 3 ft in diameter, and I would sling the webbing for the hammock around the tree, hoping to catch it with my other hand as it came around the other side. Once I had attached that side to the tree as high as possible (about 15 feet up) I would clip one side of the hammock to that webbing and clip the other side to my belt loops so I didn’t lose it while climbing the other tree. I would then climb down and traverse my way up a set of three smaller trees to be able to loop the other side of the webbing around the medium-sized tree about 10 feet from the first.

This is where things would get sketchy. I would then have to climb above the level of the hammock, hang on to a smaller branch, and lower myself into the hammock below, which when no one was in it, wasn’t more than 6 inches wide. I had done this move dozens and dozens of times and had become quite comfortable, possibly overly comfortable, with the maneuver.

Once inside the hammock, everything felt quite stable and the thought of somehow accidentally ending up not being in the hammock quickly faded from my conscious thoughts. I always wanted to be social and hang around people, only to quickly realize that I don’t like people and these interactions make me uncomfortable. My hammock spot perfectly reflected this mentality. I was essentially positioned just in place to people watch large groups and have other people pass underneath my hammock, unaware I was even there. Every now and then, someone would look up and realize I was there and might make a comment in passing, just brief enough of an interaction to satisfy my ego, while not long enough for me to get significantly uncomfortable. Besides, I had noticed that the type people who looked up and noticed me were already more likely to be people I despised a little less (for example, one guy, impressed with my spot, climbed up to check it out, and as an offering for the intrusion handed me two tabs of acid, wished me a good day, and disappeared off into the woods - a very “Boulder” interaction/experience). The hammock was set up high enough to where, on multiple occasions, people would hang their hammock underneath me without ever realizing I was there; once, people double stacked their hammocks under me and didn’t notice I was there until they managed to climb into their hammocks and look up.

The temperature on that day was just on the borderline of T-shirt weather and sweater weather, where, as long as you are moving it felt like the world was specifically designed for you to wear T-shirts but as soon as you stood still for more than two minutes your body constantly received tiny little signals that something was off “are you cold? No, it’s fine, right? No, I think you might be cold...” Laying in my hammock, facing downstream, my gaze would go back and forth between the book I was reading (deep down things - Schumm) and the handful of people who had set up shop in that small sandy area. Honestly, I was mostly just watching the dogs run up and down the banks of the creek. After building a light sweat setting up and getting in the hammock, I had been reading for 10 or 15 minutes when I started to notice the breeze was perhaps a little too refreshing? I was starting to get cold, something I had prepared for (thinking back to my days of NOT being in the Boy Scouts, the motto “always be prepared” was burned into my memory). I reached into my backpack and grabbed my gray wool sweater, which in retrospect looks good and fits well, but was objectively a bit uncomfortable. I turned sideways in the hammock to let my feet hang down, making it easier to put on my sweater. I laced my arms through the sleeves, pulled the sweater up to my shoulders, and went to pull the sweater over my head and pop my head through the neck hole.

That’s about point when shit hit the fan, I heard a large tear, as my stomach hurriedly made its way into my throat. Fuck, I was in freefall. They say time slows down when things like this happen, but I think it’s just our brain expanding the memory, because as soon as I realized I was falling my body had been folded in half from sliding through the hole in my hammock and my feet had exited and rotated my body 180° and the earth punched me in the back of my head. I went back and calculated that, as it turns out, I was in freefall for almost exactly 1 second and reached a speed of just over 21 mph. Even with my background in physics, the idea of me hitting the ground at 21 mph seems much less significant than getting hit in the back of the head by a planet moving 21 mph [they are functionally equivalent]. Perspective is a hell of a thing.

I had landed in a spot just next to a medium-size boulder, in a little ditch where a tree had been uprooted. I could feel small twigs and rocks sticking in the back of my head but couldn’t really assess the full extent of what had just happened. I saw a younger hippie guy walking by and tried to call out, but there was that familiar inability to breathe or make sounds. Honestly, thank God he didn’t hear me or see me (I don’t actually believe in God) because moments later a woman and her daughter popped into my field of view and she introduced herself to me as a nurse who is on vacation here with family. To this day I don’t remember her name but wish more than anything I could tell her thank you. She kept everyone away and wouldn’t let anyone move me, despite me stating numerous times how uncomfortable of a position I was in. The only reason I have any function below my neck, given my 0 years of medical experience, is because she prevented anyone from moving me and further damaging my neck.

She asked what she could do and what I wanted to do next. At this point she had been sitting with me for a few minutes, her daughter was holding my left hand, which I couldn’t feel at all. It became fairly clear that not only could I not move anything except for my right arm, I also couldn’t feel anything. The obvious answer was to call 911, the realization had already set in that I really fucked up this time. Oddly, there was very little panic, mostly because I had been diagnosed with severe panic disorder and the number of other anxiety related issues. My anxiety seems to work a bit like flying a small plane in a storm, in that the higher you go the more severe things get, but at a certain point you burst through the top of the clouds and things suddenly calm down, providing an odd moment of clarity. I remember the nurse asking me what I wanted to do more than once and just being shocked no one had called 911 already; I still had the awareness to turn on customer service mode and politely ask for someone to call the paramedics.

I’m not sure how much time passed before they arrived, that portion of my memory is definitely a little bit suspect. I remember detailed flashbacks in chronological order, but how much time passes between those moments is entirely unclear. Two minutes, five minutes, half an hour, have we been waiting for four hours? In reality, it was probably only about 15 minutes. I think the paramedics showed up expecting some sort of mountain rescue for a fallen climber. I remember the sticks, rocks, and roots sticking into my neck and the back of my head and wanting desperately to move. The nurse, to her credit, reassured me that it wasn’t causing any significant damage but moving me could be really dangerous. Her daughter sat, holding my now useless hand, trying to reassure me things would be ok.

Throughout all of this, the nurse and her daughter, as well as the paramedics, asked me a number of times who they should contact. At this point I guess I should explain that at that time my dad was living in France, my sister was living in Tokyo, and my mother had passed away a number of years before due to ovarian cancer. It almost made me giggle thinking about how to explain to them how to get a hold of my family. Honestly, I don’t remember who I told but they managed to send emails to my sister and dad telling them that I’ve had an accident and was in the hospital/going in for surgery. Probably not the email you want to receive at some ridiculous hour in the morning or having it be the thing you wake up to.

With all the contact information out of the way it was time to get down to business. At some point I remember being wheeled through the hospital after having x-rays taken, with the surgeon standing over me giving me the rundown on the extent of the damage. I had sustained burst fractures to the C5 and C6 vertebrae and a Jefferson fracture of the C1 vertebra, though, I think the Jefferson fracture is just a burst fracture of the C1 vertebra. If you imagine the C1 vertebra as a ring of bone at the very top of the spine surrounding the spinal cord, I basically snapped that ring in the front and back. It may seem strange to say but I got lucky, I should probably be dead this point. Which, makes me all the more grateful for the anonymous nurse and her daughter who quite literally saved my life by doing nothing and making sure nobody else did anything. To whoever you are, wherever you are, thank you, from the bottom of my heart, thank you.

Snap back to reality, it’s decision time.

“You have two options: you can go in for surgery now or you can wait and allow the inflammation to possibly go down.”

All I could think was, how the fuck am I supposed to know the implications of either option? What a bad time to realize you are unprepared for a pop quiz. Though, my life of procrastination and inability to properly prepare for anything scholastic had trained me well… cheat off of the smartest kid in proximity (or perhaps a more politically correct twist might be, have the smartest kid in the room tutor you).

So, I turned to the surgeon and asked, “What would you do?”

“I’d go for the surgery.”

I guess the surgeon going for the surgery seems fairly obvious. But then again, to assume anything is actually obvious is a great way to fail the quiz. Also, thinking back, it’s a bit funny to have someone who just dropped 15 ft. onto their head, make such a critical decision, but I’m sure they had evaluated my competence at some point...

“OK, let’s do it then.”

Fade to black, falling into the rabbit hole (abyss)…

It wasn’t until 5 years later that the idea that I could have died during the surgery to repair my spine would even register. I think my natural sense of invincibility from my childhood (I was convinced I could step into the street because I could stop the oncoming truck or climb into the lion pen because they would play with me; I’m sure most parents of boys are familiar) was reinforced by my extensive medical/ accident history; leaving me to essentially never question my own mortality. Not even when my mom died in front of me, did I ever think about my own death. I definitely joked about not making it passed 30 years old on a regular basis, and despite only making it 18 days past my 30th birthday before breaking my neck, dying just didn’t occur to me when it came down to it.

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Kenji Kanagawa Kenji Kanagawa

Chapter 5 - Prom

I never really felt like I fit in anywhere or with any particular group of people. I floated around from group to group, every now and then finding a good friend who I would then spend the majority of my time with. Even so, I felt like an outsider, I felt like everyone else was so authentic and had their own personalities and here I was, just a fun dip stick without the powder. I felt like this my entire life, like I was just trying to figure out how people work, the majority of which I did through imitation. To this day I find it incredibly difficult not to pick up/mimic the habits of those around me, an ingrained skill I learned as a child to seem like an actual person. I had major confidence issues (I’m not sure why I feel as if I’ve conquered these or have the right to boast about them being in the past) and so when prom came about, the thought of asking someone to prom and forcing them to either reject me or go to prom with someone they didn’t want to was mortifying and I’m pretty sure I didn’t ask anyone. The whole neck brace thing didn’t exactly fill my teenage self with confidence either.

My friend Jeremy always had a way of making me feel like I was less weird or that I was actually tolerable as a person. We would hop in his silver Volvo S60 after school and just drive around for hours listening to music; I can still smell the “new car smell” air freshener spray that permeated the cabin. He had one of those old zipper cases that hold 64 CDs, filled with everything from electronic music to musical soundtracks; the soundtrack to Batboy the musical is still burned into my memory…

“In a cave many miles to the south

Lives a boy born with fangs in his mouth.

Sleeping until the fading light,

Flying through bloody dreams;

When he awakes the summer night is filled with screams.”

The adventures were always aimless, but I have so many good memories from them. It was Jeremy who eventually convinced me to go to prom in his group, with his girlfriend, and a few other people.

I remember getting dressed that day and trying to put on a tie only to realize that there was no way a tie was going to fit under the neck brace that I had on. I already felt weird enough not having a tux, but given that I had broken my neck and all subsequent accidents, I just didn’t care enough to get one. I figured I’d go without a tie, but a family friend [the mother of the first person I slept with] offered a bolo tie, which I figured was better than nothing, I may have (definitely) misjudged that decision. The combination of that suit, bolo tie, glasses, and neck brace felt oddly reminiscent of an 8th grade science project I had cobbled together from shit around the house the night before it was due because I had done fuck all preparation.

To be honest, thinking back, I’m not sure what my motivation for going was. I looked like shit, felt like shit, and was going alone. Maybe it was one of those things where when you look at a car crash and you simultaneously slow down and start to steer toward it because you’re looking in that direction. Or, more likely, I was having one of those delusions where I thought someone would fall in love with me at the dance. I think I was secretly hoping for a “(s)he’s all that” moment where somebody sees past my glasses and neck brace and I turn out to be a supermodel, which, spoiler alert, much to my chagrin, did not happen [neither the recognition nor turning into a supermodel].

Despite all of the circumstances that framed what could have been a disaster of an experience, I remember having a pretty good time, or at minimum, I only remember the good parts. Part of the reason I had a good time is just that those types of events are not very important to me; but the real reason it was a positive experience was because I was surrounded by a bunch of other weirdo friends, who can make any experience a good one. It’s like getting injured and being in significant pain and one of your friends hits you with the perfect joke that just makes you want to stab them, not fatally, but a healthy little stab… “how dare you make me laugh when I am in this much pain!?” I’ve taken skateboards and full beer cans to the face but I remember bleeding with a smile because of my dumb ass friends. Going to jail sucks… going to jail with a friend!? … still sucks, but at least you’ll get a few more giggles out of it.

Looking back, my favorite people in the world were and are the weirdest people; by being unique, they offer the most interesting stories/ experiences/ perspectives. The more “normal” a person is, the more carbon copies of their personalities you can find. I have a lot of weirdness in my brain, but very little gets out, and that’s boring; don’t be like me, let your weirdness out, the world needs more of it.

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Kenji Kanagawa Kenji Kanagawa

Chapter 4 - Car Accident

After breaking my neck, I didn’t just quit baseball, I continued to attend the practices and games and hung out with my teammates. As far as I knew, I would be playing with them again next year, my senior year. Little did I know, this accident and not playing baseball this season ended up having a dramatic effect on the course my life would take. Anyway, on this particular day, I think it was the first day of the conference tournament. Our team did well during the regular season and we were ranked first and therefore got to play the eighth-place team from JFK high school. We were out at their field playing an away game, I had driven separately from the team so that I could leave early to go to a doctor’s/psychiatrist appointment (don’t remember which). Just like the year before that, we were losing, and things weren’t exactly looking like they were going to turn around. At some point I recognized that my moral support was providing fuck all tangible support to the team and I decided I could leave. At this point, I should mention that I’m pretty sure I’d taken one of the painkillers for my neck, but in no way felt slowed or impaired. I hopped in my dad’s 2002 Subaru WRX, in that world rally blue that is just burned into my memory from years of watching rally and countless hours spent washing the car… I loved that car.

In any case, I took off heading down Highway 40 towards the Washington University medical campus. Throughout the drive I found my consciousness being dragged down, out of the world around me, and into the realm of sleep. I would snap back to consciousness, only having lost a few seconds, but going 70 miles an hour down the highway, it is definitely not ideal to lose a few seconds (at 70 mph, you traverse just over 102 feet each second). Instead of stopping, I figured I could push through, like I’d done a number of times previously. Now, you can probably guess what happened next… My brain shut off for just the right amount time, at just the right place on the highway, and I woke up to the road gently sweeping right as I continued straight. I’m not sure if I woke up just before or as a result of hitting the highway median, but I was sure as fuck awake now. The left side of the car leapt into the air, climbing the highway median as I was ricocheted back towards the center of the road. The car came slamming down destroying the suspension components on the left-hand side of the car (wheels, brakes, wishbones, suspension… all obliterated). Given that I was going about 70 miles an hour, the car continued to slide across the highway for a while and as I rotated around, I distinctly remember seeing the car that was driving behind me slowing down and the driver, wide eyed, just watching the disaster unfold before them. It must’ve been a hell of a show for them… honestly, it was objectively entertaining on my end - minus the horror that is wrecking your dad’s car due to unadulterated stupidity. I ended up sliding all the way to the far-right side of the highway where my car came to a stop just after the on ramp from Kings Highway. I’m pretty sure it was the driver who was behind me who stopped and called 911.

Thankfully, I had crashed on the highway, probably within 500 yards of the hospital, so it didn’t take long for the ambulance to arrive. When the paramedics got there and began checking me out, the first question was obviously, “where did the neck brace come from? Did you already have this with you?” At which point I had to explain that I had broken my neck a few weeks previous, also doing stupid things. As they continued to check me out, they notice my broken thumb. Oh, I guess it would be good to explain that before breaking my neck I was playing catcher for my friend Matt, who had an arm like a fucking cannon but basically saw the world like he was underwater, and I would call for a pitch, he would not his head in acknowledgment, and then throw whatever pitch he felt like because I probably just looked like a squiggly amoeba at the other end of the gym [the world is a sadder place without him, fuck]. Well, I caught an unexpected curveball on my thumb rather than in the pocket of the glove and it snapped my thumb in two places [I’ve broken my fingers countless times so this didn’t seem like much of an incident]. However, the paramedics noticed the thumb brace, which honestly looked like one of those old-school rollerblading wrist guards, and began inquiring about that, at which point I had to explain it was also due to an unrelated incident. They giggled a little bit. Next, they came across the scratches on my back and began to ask if it was from the shattered glass during the accident. Now I have to explain the fact that it is from shattered glass and an accident, just a different one because I’m an ass hole. At this point the paramedics are legitimately fighting back laughter but when they see that I’m totally fine (from this accident at least) they began to have a good laugh about it. This is the scene that my mother and sister arrived to; me, sitting dejected in the back of an ambulance with the paramedics laughing and the car destroyed.

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Kenji Kanagawa Kenji Kanagawa

Chapter 3 - Glass Window

A while after the accident I was with my best friend Jeremy, and we were with a few other people at our friend Julian’s apartment. My memory in general is pretty bad but I think this was the first time I had been there. I only mention this because I typically have very good memory of the physical spaces where I’ve been. I can remember the layout from a hotel we stayed at in Asilomar California once back when I was probably no older than 12. In conjunction with this, I typically had very good spatial awareness. Well, as it turns out, if you’re in a bunch of painkillers for the muscles in your neck, then you smoke weed, all while your head is locked in one position from the neck brace you’re wearing, all that spatial awareness and memory of space goes right out the window… Speaking of that, at some point while we were hanging out I stood up, most likely because I felt like, maybe, if I didn’t move or change positions, people would detect how uncomfortable I was, as if that makes sense. In my awkward swaying about I failed to notice the vase on the ground behind me. It wasn’t long before I had tripped backwards over the vase, with my legs taking those last quick desperate steps trying to get back under my center of gravity, all with the grace of a penguin running backwards. Try as they might, my legs were not able to save me, but instead propelled me backwards straight through the front window of his apartment. Luckily for me the blinds or the screen or just dumb luck saved me from falling all the way out of the window. I was too fucked up to really process what was going on. I was aware that I just fell and I just broken a window, but the concept of personal responsibility had either not developed or was entirely not present at that moment. Thinking back, I don’t think I ever took responsibility with his parents or paid for the window. I’m definitely not proud of who I was. In the end, I walked away from the incident with a few scratches on my back and my ego knocked down another few pegs.

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Kenji Kanagawa Kenji Kanagawa

Chapter 2 - Hospital

I remember gliding out of the back door to the gym by the coach’s office, the gimmick of being in a c-collar strapped to a backboard began to wear off and the reality of my situation started to set in. It was like the door to the building had one of those air curtains at the car wash, but instead of stripping all the water off it stripped away the novelty of the situation and left me exposed. I didn’t think anything was seriously wrong, but I did understand that the trip to the hospital by ambulance, x-rays, and everything else would be tedious and expensive. I figured I’d be out of the collar and back at baseball the next day, as did pretty much everyone else, I think. The paramedics carried me out of the door, set me down on the gurney, and rolled me out to the ambulance. I remember the experience being surprisingly smooth, it felt like I was just floating. Once inside, I remember staring out that tiny little window trying to guess where we were based on the little things that would flash by. A particular statue, the street sign, even just a familiar set of trees. My dad worked in the medical labs attached to the hospital and I had worked there for the two previous summers, so I had made this drive countless times and could generally recognize where we were. I guess that was the only thing I felt like I had a sense of control over because the urge, no, the absolute necessity to figure out where we were at all times was all-consuming. To the point where I have no recollection of what the paramedic looked like, if we made small talk, or anything about our interaction… I know there were two of them, but that is more likely a logical deduction rather than an actual memory.

I remember my mom meeting us at the hospital after I’d been checked in, and taken for x-rays, and we were just waiting for the doctor to come back with the results. I had to explain what happened, but I’m sure none of it was really a surprise to her. I used to joke that my parents had a three-ring binder for my medical history, while they just had an empty manila folder for my sister (who by all accounts, was basically the perfect child, never got hurt, never got in trouble, smart, worked hard, never drank, never tried drugs, etc. basically my polar opposite). However, thinking back, this really wasn’t a joke, my parents really did have a 3-inch-thick three ring binder packed with hospital bills, notes and bills from doctor visits or visits to the orthopedists, etc. As always, she made me feel okay about the situation. She definitely allowed me to feel the guilt/ stupidity from what I had done but just enough to learn, not enough to damage.

The doctor walked in, accompanied by five or six residents who were following the doctor for rounds. He explained he had to do a few tests to check sensation and function and asked if it would be alright if the students were allowed to watch, which I agreed to without really understanding what was about to happen. After a few checks of my extremities/reflexes, I was then asked to turn on my side pull down my pants, and I soon found myself frantically trying to decide where to look as the doctor’s finger was all the way in my ass hole. I had obviously consented and he definitely explained what was going to happen, but I was certainly not prepared to have a finger in my ass, much less with a full audience of on lookers. Thankfully it was all over quickly but, as usual, I still didn’t know where to look. Not because of what just happened, but just because eye contact with people felt like holding a heavy weight at the end of your outstretched arm; with effort, it was possible, but it definitely began wearing on you quickly and was generally unpleasant.

I think everyone was expecting that I would be totally fine, there were no external signs that there was anything wrong. Which is why it was so surprising to hear the doctor said that I had a tiny chip missing from the C6 vertebrae accompanied by a tiny hairline fracture. Nothing serious, but definitely a little bit surprising and something that would mean I’d have to wear the neck brace for a number of weeks while it healed. As with most things the first five minutes the prospect of wearing a neck brace seemed interesting, maybe this would get people to engage with me? Will I get more attention now? But again, the reality quickly set in as to just how annoying wearing that neck brace would be.

As a side note, as someone with mildly obsessive tendencies, I spent an inordinate amount of time as a child avoiding stepping on cracks to avoid breaking my mother’s back. Well, obviously I misunderstood the fine print somewhere because I sit here, having broken my back… twice… thumbing through life’s manual wondering “where the fuck was this clause!?”

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Kenji Kanagawa Kenji Kanagawa

Chapter 1 - First Break

I guess I should start with the fact that this was not the first time I broke my neck. When I was 17 and a junior in high school in St. Louis Missouri, we were running baseball drills in the second-floor wrestling practice room. Both the walls and the floor were tiled with that awful 2-inch-thick vinyl padding, which gives you just enough confidence to be a real dumb ass but not enough padding to save you from yourself. Falling directly in line with that, my friend Dan R. and I had drifted away from the baseball drills we were supposed to be doing and were doing that half ass wrestling where nobody really goes full out. At some point I found myself in a body lock with his arms around my hips lifting me up. That should’ve been it, that should’ve been game over, his win… But no, I had to try to get out of it and try to rotate. Problem was, I didn’t know what he was doing and he didn’t know what I was doing and I quickly ended up upside down with him dropping me back down to the ground. BANG! I landed on the back of my head with the rest of my body coming straight down, slamming my chin into my chest and folding me in half. The world went silent for a moment, followed by a loud ringing noise, which slowly faded to reveal the sound of my own labored breathing; thinking back, the sound was oddly similar to the sound in movies and TV they use right after a bomb goes off and the character can’t hear. I laid there, not knowing what to do, or even if I was actually hurt. I’d been hit in the head a fair number of times in my life, I was a fairly injury prone child, but I had always remained conscious. This time felt different, I felt like I might’ve lost a step, I couldn’t quite breathe, and the back of my neck felt like I had been in a car accident (something I have experienced as both passenger and driver an odd number of times).

So, there I was, laying on those gross gray mats, with my teammates standing around trying to figure out what we were going to do. We couldn’t just go to the coach and say, “hey we were just fucking around and maaayyybe just broke Kenji’s neck???” Given that you had to take your shoes off to enter the wrestling room, and just outside of the room was the staircase down to the main gym floor, we thought, maybe we can drag my body down the stairs, stage the scene, and tell the coach someone was throwing me my shoe and I fell down the stairs? Over the course of freaking out and debating what to do, my hearing had come back, I was able to breathe again, and I seem to be able to move okay. I decided to gingerly walk down to the coach’s office and own up to what happened, but to try to leave Dan out of the story somehow. Well, after telling him what happened, being a responsible adult, coach Craig Sucher recognized the fact that I could have a spinal cord injury and brought me to the small nurse’s office, just off of the main gym. After hearing what happened and how I came down, the nurse called the paramedics; better safe than sorry.

The paramedics arrived and put my neck in a C collar as they examined me and asked me questions. They basically thought there was no chance I broke my neck; I would only be speculating as to how they came to that conclusion but I assume it was the fact that I had no obvious neurologic symptoms. But, just to be safe, they put me on the backboard, up on to the stretcher and out to the ambulance as groups of kids leaving school and heading into the parking lot watched on in curiosity.

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Kenji Kanagawa Kenji Kanagawa

Disclaimer

This is not going to be an inspirational story, and I should warn you that I am a terrible advocate for the community. I’m more of a discount Stephen Hawking, if he traded intelligence for function; not as smart, not as crippled [see: evidence of first statement].

It’s hard for me to write a lot of this without sounding like I am complaining. I promise I am generally happy, but these struggles are inseparable from my experiences. Also, you should know that the majority of the time that I am talking shit about other people, it is typically because I see something in them that I recognize and dislike about myself. That said, sometimes people are just awful and it has nothing to do with me also being awful. That said, there are obviously lots of amazing people out there and I will do my best to highlight them; some by name and some by category, neither more or less important than the other.

I can only tell you what happened to me and how I dealt with it. Along the way, I hope some part of my story is relatable to you or that you find some utility in what I found helpful. If nothing else, I hope it at least entertains you. But, if you are looking at getting insight on how to engage with the handicap community or be a good role model, I’ll have to point you towards some of the truly amazing people out there who are actually doing things to help people in the handicap community and inspire them like Quinn Brett (@quinndalina), Eric Hjelnes (Craig Hospital), Shawn Fluke (@livetoroll), Jo-Marie Lawrence (@jomarie_lawrence), and so many more. Originally, I began writing this just to work through some of the more difficult memories from the hospital and try to parse out where the blank spots in my memory were. After some incredible encouragement and support from a few friends, I ended up writing far more than I ever expected, and now, here we are.

These are simply the ramblings, thoughts, and experiences of a highly isolated individual. I don’t speak for the handicap community, not even if I claim to at some point.

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