Chapter 20 – The not so little small things

I was never a very food motivated person, and I really don’t like eating in front of people. That’s not to say I didn’t like food, it’s just that at most points it felt like more of a necessity than something I was eager to do. Things did not exactly improve after my accident; the effort and energy it takes to cook as a quadriplegic basically acts as another little deterrent from eating. In a twist of irony, when I am the hungriest, I have the least amount of energy and therefore basically no desire to expend the energy necessary to make the food I need so that I have energy. One shitty strategy I have is to eat a bit of candy to get the quick boost of energy without risking feeling full from it. It works pretty well unless I forget to make real food afterwards, in which case I am usually in for a very uncomfortable crash in blood sugar. I don’t know if it’s different because I am a quad, but if diabetics deal with that same feeling regularly, hats off, it feels aggressively draining; I have never experienced exhaustion that felt quite as malicious as that.

Another thing about eating, or digesting food to be specific, is that it causes your body to redirect blood flow to the digestive tract, lowering your blood pressure. A number of studies have shown that after you eat, blood flow increases to the digestive tract over 20 - 40 min. and remains high for 1.5 – 2 hours [Waaler and Toska 1999]. The amount of blood flow seems to be proportional to how much you eat, so the more you eat, the higher the blood flow goes. For me, this means that when I eat, my already iffy blood pressure begins to drop. A lot of the time, I have to stop eating and squeeze my stomach, breathe deep, and really concentrate on not blacking out. Buuut, if I eat quick enough, I can avoid feeling like shit while eating and actually enjoy the food. So, a lot of the time, eating is a game of shoving food into my face as quickly as possible, before my body realizes I’m full and it’s time to start digesting.

I have tried the whole meal prep thing so that I could have healthy meals ready to go, but I don’t know what I am going to want to eat later that day, much less what I’ll eat throughout the week. Things just tend to go bad before I get to them. I end up going with foods that can be kept for a longer period of time like frozen foods like pesto we make and freeze, Trader Joe’s frozen meals, dry goods like crackers, cereal, rice, and things that are vacuum sealed. Thankfully, there is a decent variety of healthy-ish food options that are available.

I say that sitting here at 6’ tall and weighing a whopping 128 lbs., my doctors are urging me to bring that up to at least 135 lbs. The additional weight might help provide me a bit more padding over my bones, helping to prevent skin issues, as well as just helping me have more energy. Gaining 7 lbs. doesn’t sound difficult to most people, in fact it just seems like you could stop thinking about it, blink, and wake up 7 lbs. heavier. But for me, every part of eating is relatively unpleasant, except for tasting the food, which I do love. I have to force myself to eat 2 semi -full meals a day; though, my portion sizes are more suited for a child. To give you an idea, if you gave me a single large American portion, not ridiculous or gluttonous but large, I’m pretty sure it could last me for at least 2 – 4 meals. We recently calculated the calories I ate in a day, it was a measly 1,100 calories. I am physically capable of eating more but it becomes pretty uncomfortable; every movement becomes unpleasant, especially my weight shifts, which involve me folding forward and putting my chest on my knees, and the additional abdominal pressure makes breathing a little more difficult than it already is.

All of that is to say the whole process of eating has become slightly less pleasurable, which is a shame because a lot of interaction and bonding occurs around food. Cooking with or for people, going out to dinner, eating food someone made you and being able to enjoy it, etc. all represent a lot of my favorite memories; completely unrelated to whatever food was involved, it was the people and shared experiences that really mattered. Even so, when your relationship with food is so tumultuous, it bleeds into all parts of the experience and can ruin things.

On the other end of things, the thought of shitting myself takes up a ridiculous proportion of my mental space. I can feel part of my bowels so I can kinda feel when I have to go to the bathroom. However, I have full feeling of my asshole, which is just super weird. I can't voluntarily control any of the muscles involved in going to the bathroom so I have to follow a fairly strict plan.

I take stool softeners at night and then wake up at 5 am to go to the bathroom. I used to sit on a wheelchair that goes over the toilet and has a big cut out in the middle. Picture a 4-legged chair with caster wheels on each leg and a more extreme version of one of those padded toilet seats. I use a tool to put a suppository in, which induces peristalsis to make everything move and then 20 min later I use a different tool that looks like a small finger to do digital stimulation to get everything really moving. However, that stim is irritating and can cause hemorrhoids, which I can unfortunately feel every bit of. For the longest time, I had to have a CNA do the whole bowel program for me, but instead of that tool, it was just their finger. This was unpleasant at the best of times, painful other times, and kinda terrifying on those rare occasions when you would hear something coming out shortly before hearing “uhh… that was all blood,” at which point you have to debate if you finish the bowel program and risk more bleeding or stop and hope you don’t just end up shitting yourself later that day because you didn’t finish, all while anxiously wondering how much blood you can lose and be ok. It’s like my body tried to be more like a tardigrade and poop out colorful crystals that look like star clusters under polarized light microscopy [in my opinion, prettiest poop in the business], instead, I just shit blood.

In the beginning I had a CNA that came every day for 2 hours in the morning to help me get up, go to the bathroom, shower, and get dressed. Imagine having a 2-hour window in the morning to use the bathroom and if you have to go again at any point outside that window, well, sorry, you just have to do it wherever you currently are. At work? Giving a presentation? On a date? Out hiking nowhere near a bathroom? Too bad, shit yourself where you stand/ sit. How would that change your social life? What other things would you change in your life?

Initially, I could only really sense that something was happening just before it happened. At that point, the goal was really just detecting that something had happened and getting someone to help so that I am not sitting or lying in it for a prolonged period of time. Fun fact, when you shit yourself as a quadriplegic, there is virtually no point in trying to do anything other than just sit or lay in it until help arrives because anything you do will basically make things worse. For me, it seemed to be a two-phase reaction; anxiety, frustration, and helplessness dominated everything from when I felt it coming until a while after it happened, those feelings eventually faded into shame, anger, and defeat. It’s ironic how much I would panic given that there was absolutely nothing I could do except wait and see. I think part of the panic comes from the thought that there might be a chance that some superstitious move you make, or don’t make, could stop the impending doom. Another part comes from knowing that I will have to call someone to help and there is no telling if they are available or how long it will be until they are, and even when they get there, there is still an hour or two of… disaster mitigation? All of this with the hope that the person helping will do a thorough job cleaning you, your clothes, and the chair or bed you were in. As an example, I once found a CNA rinsing soiled clothes in the kitchen sink instead of the bathtub, toilet, or, oh, I dunno, ANYWHERE else! PS they were also apparently not planning to bleach the sink afterward.

After leaving the hospital, I lived with my dad and sister, who had dropped everything to come take care of me. Having them around meant that the wait for help was minimized, and I could not be more grateful, but as I slowly transitioned towards independence and they returned to their lives, I had to start relying on a CNA staffing company to send someone out. Depending on the company or the people that worked there, it either caused a little anxiety or all of the anxiety.

Now, the feeling I get when I have to go is really similar to the feeling of having gas or irritated hemorrhoids, so trying to decide if I should expend the time and energy to transfer to the commode chair always causes a lot of anxiety and because of the hemorrhoids I am pretty much always thinking about it. Imagine stopping everything you are doing and using a ton of energy and time only to fart. Over the last 5 years I have managed to work out a way to get undressed, transfer into my commode chair, and go to the bathroom. It started with having to transfer into bed and then from the bed to the commode chair, but each transfer not only requires a significant amount of energy and concentration but also requires me to basically fold myself in half, which is a less than ideal position when you are about to shit yourself.  All of the things that are required between feeling like I have to go and actually being over the toilet and can go, feel like if a normal person had diarrhea but was required to do a Pilates routine before using one specific toilet at home and only that toilet. This makes me not want to leave the house because if I am here, I can go to the bathroom and avoid disaster or having to call for help.

Shitting yourself while seated and not having the ability to stand makes cleaning up a nightmare so I do everything possible to avoid it. But that process of going to the bathroom takes 1 - 2 hours and is outrageously exhausting.

It also fucks with what little sleep I do get because I wake up multiple times a night having to debate if I need to get up or if I can go back to sleep and not shit myself. That said, at the time of writing this, I haven’t shit myself in 5+ years; which I was/am mildly proud of, especially after I heard comedian Burt Kreischer [Burnt Chrysler] describe how often he shits himself… it’s a lot, like, more than you might think is possible for a fully able adult.

It's not just my ass hole that I can’t control, I can’t control any of the muscles below my chest; because of that, my blood pressure tends to be pretty terrible. The signals from the brain telling blood vessels to constrict to raise the blood pressure don’t make it to the vast majority of the body. When trying to figure out how to explain it to people, I always think about pilots performing high G maneuvers and how they describe both the sensation as the G’s increase and the blood is pulled down away from the brain and the procedures to counter the effects… cause ya know, that is a super familiar analogy to people. Basically, it’s as if the force of gravity on your blood has been ramped up, pulling your blood down to your abdomen and legs, sapping your brain of that sweet sweet oxygen. For me, on the lighter end (BP: 90/50), my brain becomes foggy, my muscles burn out quicker, my personality gets stripped back to “basic operational human,” and my voice weakens to a strong whisper. If I then exert too much energy, talk too much, forget to drink enough fluids, sit in the wrong position, or even look too far off to the side, my blood pressure can drop further (BP: 60/40). When that happens, my hearing starts to fade, the lower frequencies fade first, making everyone sound like they inhaled a bit of helium, darkness begins to creep in from the peripheries slowly taking over my vision, I begin to struggle with even the simplest of tasks, my breathing becomes more labored and deliberate, and all I can do is hope I don’t pass out.

OK, that’s not entirely true; I have a medication I can take to raise my blood pressure but it takes time and effort to get to. Also, when my blood pressure is artificially jacked up like that, my nerve pain tends to get pretty intense. So, I get the pleasure of choosing between being drowsy and in a little pain or being fully alert and in a bunch of pain. There are also binders and corsets for people with spinal cord injuries, ranging from simple elastic bands to full on braces with rigid supports, all designed to essentially squeeze your abdomen to hopefully increase the blood pressure, while providing varying degrees of core support. They essentially take the place of the abdominal muscles that have decided that their only function should be to randomly fire to throw you off balance and topple you over or just randomly cause pain for no reason. They work fairly effectively, except that they have a tendency to slowly start riding up until it is no longer squeezing your abdomen, meaning your BP begins to drop, and as an added bonus, it starts to compress your chest, making breathing quite the task. In my mind and experience, all of the solutions tend to just shift the problem around rather than offering effective solutions. It all feels like smashing your toe with a hammer because your knee hurts; sure, now you aren’t thinking about your knee but is your current situation any better? Or just different but equally shitty?

All of it means that I try to drink a lot of fluids and then just fight through any effects from low blood pressure. Sometimes I have noticed that if I am exerting myself and my blood pressure drops, if I push myself until I am nearly blacked out and then allow myself to recover, my blood pressure seems to be easier to maintain, or it takes more to make me black out. This was something I tried after remembering all of the air combat training I received in my years of watching YouTube videos of Red Bull air race pilots and Air Force fighter pilots. I distinctly remember one of the pilots describing their warm-up routine and how they would perform a sustained high G turn until their vision was nearly entirely blacked out but also explaining how that would make them more resistant to those effects on subsequent maneuvers. Now, I am by no means equating my experience with theirs, I just find it entertaining how you can find inspiration in the most unlikely places sometimes.

Basically me…

You will often see me sitting with my left arm folded across my stomach with my right elbow over top, arm bent with my right hand under my chin, using that left forearm to squeeze my stomach in, acting like a temporary binder. Imagine a cross between the left arm of a skinny person who is self-conscious of their weight and is covering their stomach and the right arm of Auguste Rodin’s The Thinker. In the morning I take the medication for blood pressure just to get through my morning routine, which feels like completing an obstacle course. For driving, I have a belt that goes around my stomach to make sure I don’t get into a situation where I am blacking out in traffic and can’t immediately exit and park, but also can’t use my arm trick because both arms are needed to keep from crashing into the people around me. I have worked out little tricks that work for me in different situations, they are by no means perfect but they are effective enough. The most difficult times are always social situations where I need to talk to answer questions but have low blood pressure; it’s not that they require the most effort, necessarily, it’s just that speaking is difficult and drains my energy quickly, I have basically no patience, I find it increasingly difficult to process what anyone is saying, and my facial expressions tend to make people think I am angry or upset when in reality I am just fighting that monster in the dark, trying to yank me from the conscious world. I mean, there are definitely times when I am frustrated when someone asks what seems like a stupid question when I clearly can’t speak, but those times are rare and the minor frustration I feel is always over represented by my unrelated facial expressions. It’s painful to see people clearly upset, hurt, or insulted by it, but the effort it takes to be sociable in those situations is usually overwhelming.

I have a really strange relationship with the handicap and paralyzed community. To start, I really don’t like many people in general, so if you narrow things down to a small subset of the population, the chances I get along with someone are slim. Also, I sometimes see a handicap person walking or a paraplegic doing some task, and I think, “fuck you…” no Kenji, that’s not what we say… “fiiiine, it’s impressive and I’m happy for you [eye roll].” As I’ve said before, I’m a piece of shit. I really do wish just about everyone the best, though some people are just trash, but I have to have that moment to override the shitty knee jerk reaction I have. I think it just means I’m a childlike P.O.S. restrained by a rational internal babysitter. Sometimes I see someone with more function than I have, do something that I am also able to do and I get mildly upset that people are giving them props or praise. However, that same thought process often prevents me from showing what I can do. I’ve wanted to make how-to videos for independent living, but I don’t want it to come off as seeking praise or showing off. I basically need someone to drag it out of me even though I really do just want to show off sometimes; there are other times when I really want to do it for more benevolent reasons, but it’s not always the primary motivation.

There’s also the fact that I get properly jealous when I see paraplegics doing all the tricks and maneuvers you can do when you have arm and hand control, like wheelies, going up and down stairs, getting up from the ground, using escalators, etc. I really have to work to get past the pain and frustration that comes with seeing someone less disabled than I am. Imagine wishing or dreaming to be in a position that other people might consider killing themselves before being in; I dream of just having arm and hand function again. There are almost always two general versions of an activity, one for paraplegics, one for quadriplegics, and seeing a more entertaining or interesting version of the majority of activities you want to do is demoralizing at times.

I often get pulled in two directions when I see someone less disabled… though, it probably also applies to a wider range of people in a more advantageous position than me, the slightly less disabled are just a particular trigger for me. On one side, I generally want other people to be happy and thrive, and it genuinely makes me happy to see people win; on the other side, there is an ugly jealousy fed resentment, lying in wait for my mental babysitter to fall asleep. It’s never really about the other person, they just happen to be a convenient representation of something that life has taken from me; I don’t necessarily think about it like that, but it’s complicated. I could easily sit and be bitter about it, allowing the darker side to subtly take root and permeate every aspect of my life. For me, anytime that feeling starts to come up, I have to remind myself that: a.) I’m not a victim and there are a plethora of good things and people in my life, and b.) whoever I’m thinking about is a real person, and if they were in front of me, disqualifying them as a representation of an abstract idea, I would most likely only be happy for any success they may have.

And while I do my best to control it, sometimes it feels like the only way to actually get rid of that feeling is to be completely okay with my situation, which I don’t know that I am even capable of. Occasionally, I will allow myself to vent and just absolutely trash someone in my mind, provided I don’t make it personal; knowing that as soon as I’m done, all of that negativity just fades and I can be a “normal” person again. It’s a lot how my sister and I argue, a whirlwind of opinions, points, feelings, and a healthy dose of “fuck you,” followed by a brief pause, before one of us apologizes, or sometimes not. We both did debate and mock trial in school, and I think it conditioned us to argue vehemently for a set period of time and then basically forget that the argument even happened. Also, my physical expenditure isn’t really a great outlet for anger or frustration.

Speaking of physical expenditure, I don’t really have an exercise routine; I never really have. The closest I ever came was either doing push-ups and shadow boxing with weights when I was in Japan or attempting to curl as much as possible out of curiosity when taking a break at the climbing gym. The two ways I end up staying in any decent shape now is by doing everything possible myself until I am exhausted and by being stupid. Allow me to explain. My stupidity never feels quite as apparent as when I realize I’ve been rolling around on tires that are basically flat. But, to be fair, I guess it works like a progressive workout. It’s kinda like someone pours a little bit of sand in your shoes every morning; not enough for you to really notice, but over time it starts adding up. Eventually, even grabbing a drink from the fridge 10 ft. away feels like a task and you don’t know why it seems so difficult. Then, one day you look down and notice all this fucking sand in your shoes, you then pour it out, and when you go running you feel like Usain Bolt or Eliud Kipchoge. Essentially, physics was very gradually increasing the rolling resistance of my chair by letting an imperceptible amount of air out of the tires each day. At some point I start questioning if I am sick or just generally deteriorating because everything feels more difficult, even non wheelchair related things; which is really not surprising given that I use my arms for everything, including moving around, so if you make a large part of their job more difficult, it affects everything else as well. The good part is, you just inflate the tires back to the appropriate pressures and off you go. It takes a day or so to remember how well the chair rolls, where I overshoot doorways, run into walls, and randomly roll away from where I meant to be. Like Popeye with his spinach, my arms would instantly feel 100 times stronger. I usually just whiz around the apartment with a dumb smile plastered on my face, ever so pleased with myself for solving an obvious problem with an obvious solution.

In any case, as with most things, it’s about progress, not perfection. As embarrassing as it may be to fail or to identify your flaws or shortcomings, it is by far the best way forward if you are dedicated to learning from your situation and you adjust your expectation from perfection to progress. Like a nice leather jacket, the more shit you go through the more character you pick up, provided you do the appropriate after care. You don’t need to have scars or go through adversity to have character, but people who make it through adversity typically do so by growing as people, so definitely don’t be ashamed of your scars or of who you used to be.

About two years after I had left Craig Hospital, I was back for my annual reevaluation, where they test your sensation and muscle presentation, order new equipment if needed, and generally record your progress over the years following your injury. It involves A LOT of poking and prodding; they poke you with a series of filaments of increasing diameter and stiffness, poke you with q-tips, poke you with needles, poke you with hot things, poke you with cold things, poke you with fingers… However, for this particular part of the re-evaluation, I was upstairs in urology getting my bladder checked out.

Having a catheter in my bladder at all times means that I am more susceptible to bladder infections or UTIs and because my bladder never fills, it has a tendency to shrink and become hardened from spasms. It was during that meeting where they told me about the possibility of switching from the permanently indwelling suprapubic catheter to intermittent use catheters by getting what is called a Mitrofanoff procedure. For this, a surgeon typically goes in and creates a tunnel connecting your bladder to your belly button using your appendix. This allows you to insert a catheter into a nearly invisible hole on your belly button to empty your bladder; it’s maybe more difficult than you might think to snake a catheter the normal way when seated and fully clothed [this is apparently especially true for women], made exponentially more difficult if you don’t have the requisite hand function and dexterity to hold on to the catheter. It’s not to say that it’s impossible, it’s just that mistakes are costly, both because catheters aren’t cheap and because pee is not something you want to be making too many mistakes handling. Having the Mitrofanoff not only means that you have easier access but it also means that you don’t have a catheter permanently sticking out of your stomach and no bag of pee strapped to your leg or hanging from your bed. It basically leaves you looking like you no longer have one more than the normal number of holes for a human. For those who are curious, depending on how you define a hole, a human should typically have 7 through-holes [I have 9-ish… not to brag] and millions of blind-holes… for the most part, depending on piercings, accessory ostia, etc. Watch Michael from Vsauce on YouTube for a better explanation.

However, it’s not necessarily a wholesale upgrade from a suprapubic catheter; there are a number of possible drawbacks alongside the known or guaranteed drawbacks.

First, the known drawbacks:

Rather than using one catheter and 4 leg bags a month you need to use a new catheter each time you pee and there is no guarantee that your insurance considers peeing to be essential… seriously.

You have to use a clean procedure multiple times a day, and with no hand function these are not particularly easy, though definitely possible with practice.

For me, trying to accurately determine when I need to pee based on sensation is difficult because the signals are very similar to a few other stimuli such as pain, needing to poop, being cold, etc. This just adds more stress and one more thing to worry about, guessing wrong and peeing myself… very Miles Davis.

And the potential drawbacks:

It can cause mucus production at the site if they have to use part of your small bowel as the tunnel if the appendix won’t work for some reason. You have to agree to this option beforehand and won’t know which they use until you wake up from the surgery.

The procedure may require routine follow ups to clean the passage

When I weigh the suprapubic catheter against the Mitrofanoff, I haven’t been able to convince myself that the benefits of the Mitrofanoff are worth the surgery and that things won’t actually be worse. So, for the time being, I’m sticking with what I’ve got until something happens to tip the scales in my mind. The urologist really cemented my approach when he mentioned that he wants me to be sure it is what I want, enough that I am basically saying yes to the back-up option. They don’t want you to be the person who says yes, assuming that everything will go well and they won’t have to have the second option, only to be upset when that’s what they get.