Chapter 19 – The quest for independence

As I’ve mentioned before, just after getting out of inpatient therapy, my family and my CNAs were doing virtually everything for me. Any idea of independent living was just pure fantasy, and I couldn’t even see the road to get there. I didn’t really search the internet for videos of people living independently, which probably could have helped. I don’t really know why I didn’t, or still really don’t, aside from one guy’s transfer video; a technique I promptly stole and have received a significant amount of compliments and praise for, always giving due credit to LiveToRoll on YouTube. Part of it is that a lot of ‘disability’ videos make me cringe; not entirely from the content, sometimes the comments section is a showcase of disability or inspiration porn. For example, without naming names because they all seem like good people, but couples seem to bring out the worst in people. The majority of the comments are along the lines of “you are such an amazing person for loving that disabled person!” And if that is the majority of your audience, you should probably not continue to play into it. Also, it’s hard to watch entire families treating the person in a wheelchair like a child and seeing them just accepting it or playing into it. That is to say, it’s not for me personally, I’m just a cynical piece of shit. Maybe there is something to it, like watching a dog with three legs play, it’s cuter than if it had all its legs? Maybe some part of the social human instinct to protect the vulnerable members of the group?

In any case, my road to independence began with simple actions, driven by that overwhelming anxiety I get when someone is doing something I feel that I should be able to do. Ever have someone tie your shoes as an adult? Or feed you something in a non-romantic fashion? Just stretch that feeling through the entire day. It started with just trying to hook one of the straps from the sling on the lift when I was being transferred. Then, I would try to get two, then three, then all four. Almost everything went in these tiny little increments. Every now and then, I’d have big leaps if I could figure out a trick or technique or found a particular tool that made things significantly easier; like if you had been trying to pick a lock for hours and then someone hands you the key or you see that a window is wide open. Generally, the things that had to be done on a daily basis out of necessity [getting dressed, going to the bathroom, showering, eating, etc.] came first, mostly because I had the most opportunity to practice them.

One of the most important things that I learned is that with just about everything, the first series of attempts would generally be so pathetic that the task would seem impossible; being able to laugh at myself was really helpful, if not critical, in pushing forward through the failure. As an example, when I wanted to learn to put on a pair of socks myself, after hours of therapy sessions and days, weeks, or months of trying one trick after another, I finally had a system down and they filmed me doing it for an independent living video series. That video is 15 min long and shows me getting one sock on. Now, with less set up and a more widely applicable technique, I can get both socks on in under two minutes. Actually, I can get fully dressed in the time it originally took to get one sock on, which represents an enormous time and energy saving.

I think my isolation has allowed me to try more shit and improve those small-scale skills, like opening packages, cooking, and organizing pills. When people are around or someone is watching, you become acutely aware how long things are taking and there is an awkwardness and discomfort that rapidly grows. For example, let’s say we are going outside and I need to zip up my jacket, when I was first learning, it would take multiple tries and a significant amount of time. If I am alone, I just focus on the task and try until I get it, but if someone is there, each attempt ramps up the anxiety, knowing they are waiting and that if I asked for help, we’d be done in 10 seconds. The thing is, everything takes an excruciating amount of time to learn and practice to get to the point where things are impressively slow if you are able but impressively fast if you are crippled.

Being able to do everything myself has two major benefits. First, because I am in control and I am the one responsible, any frustration can be laughed off or dealt with internally, which also meant that I could redo or fiddle with it as much as my anxiety demands. Second, it meant I wouldn’t get fucked over if my CNA can’t or doesn’t show up. I have had quite a few times when this has happened, mostly coming down to snow or ice storms making driving too dangerous, but on occasion just because people are irresponsible. If someone doesn’t show up and I can’t do everything myself, I would be stuck in bed, hoping my catheter bag doesn’t get too full, hoping I don’t shit myself after taking a laxative the night before and having my body trained to go at that time, and hoping I don’t need to eat more than the emergency bag of skittles on my nightstand for blood sugar crashes. You can imagine that in a snowstorm, when you aren’t expecting conditions to improve, those aren’t issues that get better as time passes. Also, being able to do my own transfers means I don’t have to get in and out of bed on someone else’s schedule. Not having to do everything on a variable schedule, completely out of your own control is a pretty great motivator.

A little over 3 years out of the hospital and I would say I was functionally independent. I still had a CNA coming every day in the morning, but they were essentially making sure that I was still alive and then doing the things that would be the most time consuming or exhausting tasks, like making the bed, filling bleach bottles, doing the dishes, and cleaning the bathroom. The key was, if they weren’t able to make it for whatever reason, I could still do everything and make it to appointments, work, etc. without having to call in emergency backup; when the wheelchair repair people or doctor has only 1 appointment available in the next month plus, being able to get up at the time I need to and being able to make that appointment becomes that much more important. Relying on other people to show up and be on time for something important to you can be stressful, and it’s that much worse when that is the case for everything in your life. The best part about it still might be just feeling like a person again, the increased isolation is also a welcome reprieve after years of forced socialization; most of the people were amazing, I am just a hermit. Like a tardigrade in its tun state getting rehydrated and coming back to life, if the process happens too quickly, the very thing bringing you back to life becomes the instrument of your demise. For tardigrades, it’s all about how to get water back into the cells, while slowly removing the protein-based support structures, importantly, in a way that doesn’t damage the cell. An extra appropriate analogy because, like the tardigrade, after experiencing massive trauma, it’s important to slowly replace the support structures that have been keeping you alive; and you could just remain in your tun state, but if it’s not necessary for survival, it doesn’t really seem like living.

After taking the summer after that first semester off for therapy, I signed up for the next round of classes. It took a week or two to become “comfortable” with classes again; but, with a little routine for the start of new classes, each successive semester went a little bit smoother.

Before classes started, I made sure to print out the disability accommodations forms for each professor and make sure to email them and set up a time to talk to them about the logistics for their specific course. I would also make sure to go through the disability resource office to get any digital copies of books that I would need; though, I eventually found it easier just to use physical copies than to use the digital versions. During the semester, I would contact the disability resource office about a week before each test to make sure that I had a room and a proctor. Everything else was worked out with the individual professors. I think most professors are afraid to do something wrong or be seen as being unfair to students with a very visibly handicap and I’m sure it could be taken advantage of. Sometimes they are quick to drop tests, quizzes, or assignments when there was a logistical issue due to my disability rather than finding a way for me to complete them. I would have to almost insist that it was ok and I could find a way to complete the work. Obviously, I don’t intend that to sound like a criticism of the professors; it’s a nearly impossible situation for them to figure it out on their own and there are a million ways they could end up offending the student. The safest option for them is to just not ask the student to try to work around any difficulties, rather than ask a question or make a request that someone might get offended by.

I would prefer to be treated normally but I recognize the difficulty for other people to just guess how someone they don’t know will react to a given statement, request, or question. I always feel that if the person’s intentions are good, they should be able to ask whatever. I remember a guy at Trader Joes who saw me and just bluntly asked, “what happened?” with a smile on his face. There are plenty of people that would be offended by that for a number of reasons, but the way he asked and his disposition came off as positive and curious, with no sense of malice or pity, and I was happy to answer, but I definitely see how someone could be extremely offended. In any case, the professors’ trepidation in interacting with disabled students is understandable, but really annoying, to me.

Sometimes, the logistical barriers bordered on ridiculous. For example, one semester I needed to take the nuclear and particle physics class but the only time they held the class was at 9 am. The thing is, because of CNA scheduling, I had no control over what time I was going to be getting up. That semester things just didn’t line up and I couldn’t make it to the class. I didn’t give up there, though I feel it would have been completely justified; I talked with the professor and he agreed to just send me all of the PowerPoints for each class along with the lecture notes he was working from. A few weeks in and I felt like I was drowning, everything on the physics of particle colliders seemed really unclear and I felt properly dumb. However, when I talked to a friend who was also in the class, he told me everyone in the class had the same feeling. Apparently, there were two professors for the class and the first professor, who was covering that material, was just confusing the shit out of everyone. Without being able to be in class to ask questions as they came up and without being able to hear the extra things that the professor was probably explaining in class, things were significantly more difficult… I think. Teaching myself nuclear and particle physics based off of lecture notes, shortly after becoming paralyzed, causing a complete shift in my learning style, only worked because I never stopped to think “is this doable?” Without attending a single class, I somehow ended up with a B+, which isn’t ideal, but given the circumstances and how incomprehensible that first month of material was, I definitely wasn’t too upset. I mean I’d be lying to say I wouldn't still feel shame if I didn’t get an A; my expectations hadn’t readjusted to my situation. To be clear, I was never a straight A student, I never put in the requisite effort; but now I was putting in extreme effort and not getting the grade I think I’m capable of getting.  

After an arduous 3 years of classes, on and off, I finally met all of the requirements for graduation. Most of the final credits were for BS general credits that didn’t transfer from the 2 years I spent at Sophia University in Japan. My friend Autumn flew in to go to my graduation, something I wasn’t even sure I wanted to go to.  The whole public spectacle of graduation ceremonies just didn’t appeal to me, but I felt like it was something that I should just push through and do; partially for my own benefit and partially for my family and Autumn who hung by and supported me through everything. At that point, the diploma almost seemed like something they were receiving for all their work and sacrifices. I didn’t even bother doing the whole cap and gown thing, instead I wore a black silk kimono with my family crest on the chest; it was very half assed, but very few people question you when you are in a wheelchair; I could have shown up wearing floaties and face paint and no one would have said anything. At the graduation, we had the fun task of figuring out how to get into what is probably the least accessible room on campus, and we had to figure out how to get to the ground level of the stepped lecture hall if I wanted to actually get my diploma during the ceremony. I was already a crabby asshole and having to find the cheese in the maze was just making it worse. Thankfully, someone noticed my confusion and guided us down a path that I would literally have never found, down to the floor level of the room.

We got in a bit late, but I got a few friendly nods from a few of my professors who were presenting. I almost didn’t turn in my name card to be included in the actual ceremony because we were late and I already didn’t give a shit from the frustration of just getting inside; thankfully, Autumn wasn’t having that shit and ran my card up there as the ceremony was going on. When it was my turn to “walk” and receive my degree, I started rolling my way up to the front. I was really nervous that I would start spasming or my hands would lock up and I would struggle to actually take the diploma. I didn’t care how I would look in those scenarios but I know it would make other people uncomfortable and incite pity. Well, I didn’t spasm or lock up, but as I rolled up to the front and the normal applause began to taper, there was a sudden crescendo in the applause as the audience realized that a handicap was graduating. I almost laughed out loud when I noticed what was happening. I wonder to this day if they realized at any point what they were doing or had done. People who had done some seriously impressive things got much less applause. I took no offense and it all just made me giggle, and continues to do so to this day; for that reason alone, going to graduation was a great decision. Also, technically, I can say I “walked” at my graduation.

Sometimes I think I might be making something up… until I find video evidence.

My plan after graduation was to take the GRE general test and physics specific subject test all three times it was offered in the year, once in the spring and twice in the fall. Before graduation, I started the process of signing up to take the test, something that should take 15 min. I quickly realized that this was not going to be an easy process. They had a section on the website that was dedicated to disabled students and accommodations, which was a really encouraging sign; however, reality would quickly set things straight with no remorse. As expected, you have to get approval for each specific accommodation that you will need. This involves filling out their registration form and an accommodations request form; additionally, you have to prove how disabled you are by obtaining documentation from your doctor. As you can imagine, despite never being worried if I would be approved or not [this is certainly not everyone’s experience], none of this is very quick and just adds another piece of proverbial straw for you to carry. During this process, I had to talk to a woman on the phone to work out how and where I would take the test, given my specific accommodations. Originally, it looked like I would be taking the test at CU Boulder, just a few miles from my apartment; however, that location doesn’t offer the test for students with disabilities, I’m sure there is a reason, I’m just not sure how angry it will make me to hear. To take the test with extra time, breaks, etc. I would have to drive an hour and a half to the opposite side of Denver to a different location, oh and the extended time meant that I would have to be there much earlier. The problem with that combo was that I can’t just ask my CNA to show up at 4 am and I wasn’t super keen on skipping the bowel program and just hoping that I don’t shit myself during the day long test 1.5 hours away from home. Taking the GRE was becoming a logistical nightmare.

Now, you could apply to grad school without GRE scores and explain your situation; but breaking your neck in the middle of school makes you miss internships due to time constraints and being paralyzed, and grad schools are rightfully unimpressed with you not having completed any internships and really don’t care what you overcame just to graduate. I’ve tried to find internships or entry jobs so that I can build a stronger resume but a lot of those opportunities are targeted towards current students, not a 35-year-old budget Stephen Hawking. Another thing is that the amount of effort it would require to pursue this path has made me question how much I really want to do it. Sometimes you see something and feel an attachment but when you find out the mountain you have to climb for it, that shiny object starts to look a little tarnished; other times, you just don’t care what the obstacles are, you are going forward “full speed ahead, damn the torpedoes!” My particular hill has caused me to pause, not turn around, but just made me really assess if I think it’s worth it. I’m currently sitting at a crossroads of trails atop a false peak, looking at what I’ve accomplished, and the path forward, but also a myriad of other trails leading in all directions, unsure what particular brand of adventure I want to embark on.

And don’t get me wrong, it is not impossible to continue as a physicist and succeed, there is simply a higher bar of entry, a more expensive cover charge; but if you are willing to put in the extra time and effort, I believe you can succeed… provided, I guess, that you would have succeeded if you weren’t paralyzed… it’s definitely not going to make things easier. 

Maybe one day I’ll find the motivation to go back and get my PhD.

After I graduated and realized how difficult it was going to be to even take the GRE just to apply to graduate schools, the pressure was on to find a job or just something legitimate to do with my time. I started out relatively slow and deliberate, applying for jobs that I actually met the qualifications for and that seemed like a good fit… which, as someone with no experience or internships, who’s in a wheelchair, and is fresh out of school, is not many. However, after a few demoralizing months, I was speed loading a shotgun and just shooting at anything that moved; Lockheed needs a new CEO? I’m in. SpaceX needs a janitor? Let’s go. Lead weapons designer at Raytheon? You betcha. Principal dancer for the American Ballet Theatre? How the fuck did I end up on this job listing? But yeah, why not? I can think of an extensive list of reasons why not… I think LinkedIn caught on to how wide my search had gotten and thought, “oh, this guy will do anything,” as evidenced by the multiple recent emails from them seeking a lactation specialist in Denver.

Part of the challenge in finding a job is that just about every job you find has “ability to stand,” snuck in the requirements somewhere. There are actually a lot of those little “standard” requirements that you barely read because they seem so trivial, but feel like specific attacks to individuals with disabilities. I just saw a job for an assistant at an organization built around supporting the disabled community, but you need to be able to stand, and lift 50 lbs. repeatedly… why? What the fuck are your accounting assistants doing? After seeing that type of thing on virtually every job listing, I decided to switch my focus to finding a remote or work-from-home position. I honestly started by just Google searching “best remote position companies” and seeing what types of positions were available. I didn’t really expect to find anything related to my degree and mindlessly searching through all of the jobs the top companies typically offered was starting to become mind numbing.

Thankfully, I came across a company that offers freelance work editing and formatting scientific papers written by authors whose first language is not English. Given my degree in physics, numerous friends whose first language isn’t English, and years teaching English, it seemed like the ideal fit. The first step in the application process was an editing test somewhat similar to the grammar portion of the SATs; What is wrong with this sentence? Where does the punctuation go? What punctuation do you use here? I was not expecting to get past that phase; even though I had taught English in Japan for a number of years, I had mostly taught conversational and spoken English. To my surprise, I saw an email from them a few days later inviting me to complete an online orientation, after which I would be able to start accepting jobs. It almost seemed ridiculous how quick and easy the process was once things got moving, given the year of rejections from hundreds of applications [literally hundreds].

Here's the thing, the Covid-19 pandemic forced companies to reassess if jobs could be done remotely. As soon as the pandemic hit, it was fun to watch companies pull a 180 on their position on what jobs actually required you to be in the office; it was a little bit of, “ohhhhhh, iiiinteresting… I swear, some dummy has been telling people with disabilities that these jobs definitely couldn’t be done from home…” Also, I don’t want to make the job search seem so bleak; if you show the dedication, talent, and ability, companies will overlook a lot of those “requirements.” Circumstances have forced companies to relax some of the more idiotic requirements for positions that might have previously disqualified a large portion of the handicap community. Of course, due to the same circumstances, there are more people competing for those positions; but it's all about the ability to compete. There is obviously still a bias in the job market against those who are handicapped, but that is where persistence becomes key; you have to make them recognize your worth, make it so they have no choice but to hire you. The dumbest part of it all is that so much of it can come down to who you know and who likes you, all you can do is be as personable as possible. Ideally, you make such a good impression that even if the job you are applying for isn’t a good fit, they remember you if and when a more appropriate position comes up.

Finally finding a work-from-home job editing physics and engineering papers was a huge relief. Not being able to make money was becoming demoralizing. It’s not that I want to be rich or anything but having to solely rely on my family and Colorado Medicaid for everything was just eating at me. I still receive financial help from my family and Medicaid [being paralyzed is expensive, have I mentioned that before?] but being able to work and be productive has been invaluable. Also, the job that I ended up landing on was perfect given the variability of my health and not knowing how I will be feeling or if I will be able to work. I can rest when I need to and work when I am able. The work from home aspect means that I don’t waste time and energy transferring chairs, driving, and all the other logistics involved with leaving the house and being around people. I get to look at a list of available assignments and decide what I want to accept based on pay, assignment length, subject field, etc. Each assignment typically takes 1 – 3 days, depending on the word count and how poorly it was written. No disrespect to the authors, writing a scientific paper in a non-native language is massively impressive, it’s just that sometimes it’s reeeaaalllyy difficult to read or understand and then rephrase.

One of my favorite parts is the fact that I essentially get paid to read scientific papers on topics such as designing AI systems to evaluate burn victims, evaluating exotic materials for high-power lasers, and the use of deep learning in a myriad of different applications. Most are topics that I wouldn’t necessarily have read or come across on my own and it serves as a great little view into a number of different fields. It’s basically window shopping for science; you get a quick glimpse of one little bit of a field but soon move on to the next item or store, with most things you see being uninspiring and quickly forgotten. Sometimes there are papers that are incredibly interesting that really catch your attention; the one problem there is that you can’t talk about the paper with anyone because of the confidentiality agreement you have to sign.

At this point, I’m still really enjoying my job but I am definitely looking out for what is next, whether that be going back to school, starting my own editing business, or switching jobs entirely. As with most things for people with paralysis, the options are limited, and a lot of the things that I want to do most are not really viable options at this point. Unfortunately, most involve a certain level of dexterity or strength – welding, composites work, fabrication, soldering, etc. Even so, I think if there is something that truly captures my attention, I will find a way to be involved in some capacity, and I might just stumble across an unexpected gem that I would have been happy to do when fully able but might never have tried. Maybe that’s just blind optimism, but I’m fairly certain blind optimism will get you farther in life than perpetual pessimism, so on we roll.

In terms of my social life after getting out of the hospital, I did a really poor job at keeping in touch with people and pushing or asking to hang out. I hung out with people a few times, but I got tired of being the reason we couldn’t do something or couldn’t go where people wanted. I remember a lot of times where people were going back to someone’s house that wasn’t accessible and just understanding that basically meant goodbye; or hearing people get excited about an idea, only to feel that awkward moment they realize it’s not accessible, I always just want to bow out, knowing how excited they were about it; or people would come to hang out but something about the brevity and the slight hint of discomfort that always made it feel identical to a hospital visit. In the end, I started to see everyone I used to hang out with less and less until it almost felt like it would be weirder to talk to them than not. I’m not trying to say people disappeared on me, I was difficult to be friends with before getting injured and things after just required more effort, something neither of us wanted to put in. I’m sure it’s more of a sliding scale where some people put in the effort but I disappeared and others where I put in the effort but they disappeared.  

My best and oldest friends were already in different cities, states, or countries; the only thing that really changed with those relationships was the decrease in the occasional chances we did have to hang out when we found ourselves in the same city. I had a few friends from St. Louis come and visit at various times, and one of my best friends in the world, Ati, came to visit me from Japan. Along with those old friendships, I’ve made a few new friendships and rekindled a few old friendships as well. Let’s be honest though, there were more rekindled friendships than new ones, I’m not social enough to meet enough new people to find ones I would enjoy hanging out with. I meet plenty of people I like but I just get a strong feeling we wouldn’t be friends; I don’t think I have been wrong often. Also, it takes a lot for me to feel comfortable around people; though, given the right person, just being with or around them somehow makes me feel comfortable being social [Adam, Jeff, Will, and Ati]. It’s almost as if even if the entire group turns against you or hates you, as long as my friend is there I couldn’t care less; of course, that didn’t really impede my never-ending quest for the approval of people I don’t know and generally don’t give a shit about. I probably came off as an extrovert when Adam or Ati were around [I saw Ati, Will, and Adam basically every day for a few years, seeing Jeff was more of an event or occasion], and through that situational social confidence, I made a fair number of other friends; looking back, I think I can trace the vast majority of friends I have to situations I was in because of just those two friends. That is how it has always been, I’ve pretty much always had one core friend and the majority of my social interaction branched out from them.

Adam, recoiling from the sight of his hat. My actual hat that day…

I met Adam because I was with my best friend just after high school, Will, at his friend’s house for a party and I was asked to pick Adam up from work to bring him to the party. Fun fact, he got fired from his job the next day because he left his work clothes in the car and my dad took the car to work the next day; the most appropriate way to start a friendship that would lead to its fair share of debauchery. I met Ati at a Japanese language school in Tokyo; we were in the same class and he seemed like just as much of a closet degenerate as me, and a few of us would hang out in the smoking section behind the school between classes. The usual suspects back there typically included me (half German half Japanese born in America), Ati (half Indian half Spanish), Thomas (French), Abdo (Moroccan), Pen Sheng (Taiwanese), Alex (German but lived in America), Tan (Singaporean), Antonio (Croatian American), Daniele (Australian), and a few others I’m probably forgetting. At some point, the topic of weed came up, a very no-no substance over there, and it quickly became apparent which of us were probably going to be good friends. We did a lot of stupid shit together and through that found out that our personalities just matched. My favorite fact about Ati was that the guy could speak like a half dozen languages but none of them completely ‘fluently’; before even learning Japanese, he still managed to become good friends with people without ever being able to have an actual conversation with them.

Things have changed, I’m out here in Colorado, not very comfortable with traveling yet; Adam lives in Arkansas with his amazing wife Maddie and their amazing daughter; Jeff is on the West coast working on multiple fronts; and Ati just opened a bar/ restaurant in Tokyo and is still running his import company (Spanish wines and Indian mangos). The same goes for all of my old friends, everyone has found themselves in random locations, dispersed by the random events of life. I’m sitting here writing this after the Covid-19 pandemic, where self-isolation just felt like the logical progression to my social life, basically turning me into a full-blown hermit. However, as an actual introvert, it seems like the world has finally shifted towards making my disposition the expected norm. All my life, introverts were expected to go out and be social, despite the inevitable discomfort. During the pandemic, everyone was supposed to stay home, not gather in groups, etc. essentially become introverts, and the kicking and screaming by grown adults became almost comical; like, calm down, it has been one year, plus if you could control yourselves this could have been a much shorter endeavor. That is all to say that even though there was a precipitous drop in the number of friends I have, the quality of the relationships that have endured or that I have formed after, has increased.

I met my friend Jeff through my sister while in Japan, but he is currently out in California and Oregon; he is basically a slightly different version of Adam and Ati. They are definitely different personalities, but their energy and vibe are basically identical. It’s funny how similar their vibe is despite having wildly different backgrounds [Ati – Spanish/ Indian, Jeff – Iranian/ American, and Adam – German/American] but it definitely explains why I like them so much and why I get along with them so well, despite my penchant for being alone and avoiding people. I really failed to keep in touch with all three, but as with Adam and Ati, I could go years without talking to Jeff and then just pick up right where we left off when we do talk. I had a ton of fun running around Japan with him; I also learned an immense amount about life from him, in all different situations. Honestly, I think I was kinda jealous and I wanted to be like him; he is attractive, great with people, really smart, successful, etc. I recently got to talk to him and catch up and it reminded me how much I enjoy talking to certain people; even after 5+ years of not communicating, it was like we had talked last week.

 Jeff, the day I met him & visiting him in Portland

I have heard a lot of SCI patients say that all the people cheering for them while they were in the hospital quickly disappeared after they got out. For me, the isolation is not really a negative but hearing other people’s stories and hearing the crushing sadness in their voice as they try to navigate the shame and anger associated with having your friends disappear when you need them most, is difficult to digest. Also, for me, I think that I hate myself on some level and I end up projecting that on other people and thinking they must hate me too, which makes me not want to bother them and I withdraw from interacting.