Wheelchair DNA

I know I’m verbose because I don’t even like reading all that I’ve written sometimes. Keeping this in mind, I’m going to give a high level summary of my three months in Germany. If you give me the time of day, this is what I’ll tell you when you ask about Germany.

I want to write a continuation of part 3 with much more detail, but that’ll take longer. So here you have a summary of the entire 3 months.

Once I got to Germany, my mom picked me up from the airport and we used public transit to get to the hotel. My first injection would be delayed by one day, relieving none of my anxiety. I didn’t know what to expect, which is daunting for a lumbar puncture. The injection went swimmingly and a few days later I was on my way to Bochum – a medium town that has so little tourism it gives you the feeling that you’re really seeing Germany and how the people live. Getting to the Airbnb wasn’t hard, but getting in was very difficult. There are 3 steps to get into the building and some random people off the street had to help my mom and I get me up. I knew about the stairs, and you’d believe me that it was the best option. All the hotels were far too expensive and all of the airbnbs had steps or some type of obstacle. I messaged the owner of this airbnb and he was beyond helpful – sending me pictures of the doorways with their dimensions and after my arrival getting a piece of plywood that I used as a ramp for the remainder of my time in Germany. This really was the best option.

The reason I went to Bochum is because that’s where Cyberdyne is located. I won’t go into the details of how the physical (physio) therapy industry is entirely other, but trust me, it’s different. At Cyberdyne, they offer an exoskeleton designed for walking-recovery. Cyberdyne is recommended by Anova (where I got my stem cells). They are very far from one another. Some days the trip from Bochum to Frankfurt was 3 hours and other days 11 hours. Still, much better than navigating the beast of the physical therapy industry. The exoskeleton moves only when given signals that come from electrodes placed on the hips, glutes, hamstrings, and quadriceps. The first day I went in was an evaluation to see if I can use the exoskeleton (called HAL). I did not qualify. I had NO signals. What made this difficult is that I had my Airbnb for 3 months in Bochum, an otherwise uninteresting city with limited options for physical therapy. There was no way of knowing I wouldn’t have signals and honestly I learned my lesson about hubris. It never occurred to me that I wouldn’t qualify. In most things I’ve been exceptional and lucky. I learned my lesson.

For the next month I tried to figure something out and I felt for the first time what it’s like for people who struggle to get things done as days become weeks. For the first time, I really really felt a loss of motivation. Luckily, Cyberdyne reached out to me about an opportunity to come back and try something new to everyone. Connect the electrodes to my arms, move the robot, and get the walking motion. Cyberdyne is a Japanese company, and from some part of Asia there was a case study showing the possible efficacy of using arms to get signals to appear in the legs. We gave it a go. It was hard to get the rhythm but after a few weeks I figured it out.

A few weeks later, when doing a routine leg-signal-check, we found that the signals were good enough to start connecting the electrodes to my legs. This was an important moment for the obvious reason, but it was even more important for the not obvious but easily understandable reason of my mental health. At this exact moment, I didn’t believe that anything would happen. In fact, my thought was this “we’re about to test my leg signals and prove that there is no case study efficacy because this just isn’t going to work.” And then it worked. I would’ve liked to have a positive mindset and I’m not confident you’ll understand how I felt exactly, but it wasn’t a good feeling to do so much, go so far, and have objectively made no progress. But now there was progress and I felt better. I wanted more, so I couldn’t say I was ecstatic because it almost felt like too little too late, but I didn’t look my gift horse in the mouth.

I admit, a lot of the signals came from my hips, which had a lot of movement from my abs/obliques. Whatever, who cares, it’s a start. I was able to get the exoskeleton to walk pretty well. Over time the signals got stronger, mainly my hips and my hamstrings. This meant that I could lift my foot to move it forward but the extension of my leg (coming from signals in my quadriceps) was not so good. My leg still extended, but I’m not sure if the movement came from the momentum of my leg/hip swinging forward, OR maybe the signals were very very small. Either way, once my leg came forward, it did not stay straight, so I couldn’t put any weight on my feet. There were two milestones while using my legs that are of significance. Using A1 for signal detection and walking at a speed of 1 km/hr for a few minutes. The signal detection is B10 the worst (what we tested in the beginning) then B5 B2 B1 A10 A5 A2 A1. A1 being the best/most ideal.

Objectively, there was progress because we lowered the signal from A10 to A1. This is as far as I got before coming home. Now that I’m home, I’m doing physical therapy three days a week, maybe four. The physical therapy I’m doing is at NeuAbility, which sends electrical signals to my legs instead of receiving them. This means my muscles are contracting, whereas at Cyberdyne my muscles didn’t contract. Cyberdyne can be thought of as ‘active’ because it’s based on signals coming from me, and NeuAbility is passive because if I were to not focus on my leg moving, the muscle would still contract. Now we’re trying to think about how to measure progress. What objective and measurable thing can we do to track progress? No clue. This is only important until I gain motor control. Once I can move some part of my leg, then we just measure that and hope to watch more muscles move over time.

This is the end of the abridged story of my time in Germany, focused solely on the medical side of things. Of course a lot more happened, some of it I can’t tell you, some of it I will.

Thoughts:

The big question I’m asking myself is how long do I go without seeing progress until throwing in the towel? And then I’ll keep going for a month just to be sure (exhibit A: when I nearly gave up with Cyberdyne). If I see progress, linear or exponential, the time it takes is not an issue. But I need to see progress. I also want to do many other things in life, I wont hesitate to throw in the towel, accept my fate and go on with the rest of my life. It would be silly of me to cancel my plans to live abroad because I want to keep doing physical therapy despite not seeing progress for a year (for example).

Overall, I think it was good. I don’t regret doing it. I wish I could’ve done it sooner. I will admit that although it was good overall, I had more than my fair share in beatings. Mental guerrilla warfare. Many battles were lost and the war isn’t over. I am hopeful, I am optimistic, I think there’s a good chance I will walk again and I’m coming back swinging. I am the man in the arena.

But just because I’m hopeful and coming back with fervor doesn’t mean I don’t struggle immensely. I’ve always had a plan for my life but I stopped planning after stem cell, I just didn’t know what would happen. And now, in addition to the hardships endured using a wheelchair, I’m also confronted with the struggles that everyone has. You know, the purpose of life stuff, it’s not easy because if I want to move a mountain one stone at a time, I need to find the mountain and then the stones.

Walking will make my life so much better. I’m working on it.

I’m here to tell you, without a doubt, that I want to write more. I think I actually need to, even if I don’t publish it, my mind is emulsifying under the pressure of thought. It’s nothing special, but since the entire world exists in my mind, it feels important. Once I start writing, thoughts become words. And words. Those are real. There’s the part of us that “hears” our thoughts (the ‘self’?) and then the thoughts themselves (a river). When my thoughts become words, no longer am I just watching the river of consciousness flow past but instead filing up my cup and offering the world a drink . Once I do that, the pressure will release.

Soon. I hope.

As a recap, there are four gyms within walking distance. I could take a bus/tram to a gym further away but that’s far from ideal. The first gym is a university gym and only for students, the other gym is really hard to get to and only allows a 1-year membership, the third gym has two floors with all the free weights on the second floor (only accessed by stairs). The fourth gym I had yet to check out when I wrote last. My mom and I went to AI-Fitness (all-inclusive), the last gym to look at, and with high hopes. Getting there was easy, mostly flat, and it felt promising. Unlike the other gyms, this was a stand-alone building with a parking lot, which was comforting because it reminded me of America. Upon first glance, this one-story gym looked clean and promising, so the first thing I do is ask if they speak English,
“of course“
that hasn’t been my experience but alright, the next question is about whether or not I can sign up for a few months or if I have to do an annual membership,
“yes, you can sign up for a month-by-month membership.“
Great, now it’s time to do a tour and I can do that on my own because I’m very familiar with the gym environment. After looking around enough, my heart drops at the sign of stairs going into a basement, and would you know it? The free weights are down there, along with the men’s bathroom. At this point, I’ve just given up the idea of having a good workout until I’m back in Colorado. I had a good look at the machines in the gym and they aren’t sufficient, so by default, McFit will be the gym I go to because although the gym is 2 floors, there’s an Edeka below with a bathroom and it’s closer. But that has to wait, because the next day (Thursday the 10th), I’m going to Frankfurt to spend the night and get my second stem cell secretome injection Friday Morning.

(interlude, I guess)
Before getting into all that, there are a few observations I want to discuss. A lot of people smoke, much more casually and it’s accepted in places like bars whereas smoking in American bars is illegal. Any progress made for healthier lungs has been reversed with all the secondhand smoking I’ve done here. I already breathed through my nose, but now I do it fervently with the absolutely tragic consequence of smelling the pungent, sticky trash (when there isn’t smoke in my face). About half of the time I’m outside, I’m looking down to make sure I don’t hit a bump or go over something like poop or gum, since this is conscious observation, what I’ve noticed is a lot of glass. A lot. I don’t live in the city city of Denver, so maybe it’s just as bad back home and I’m unaware, but I’m willing to bet that per capita there’s more glass here nested in the bricks/cobble that is all too well spotted with what used to be gum but now looks like someone was dripping tar. While I go along these gum & glass ridden sidewalks, instead of a Starbucks at every corner, it’s ice cream. There might be the perception that Europe, including Germany, is healthy because of all the walking and lack of an FDA equivalent that lacks itself, but with all the smoking and ice cream I think we’re about even.

Thursday we walked into the city center and through a very cool food festival complete with ceramic dishes, full-size meals, and everyone dressed like it’s at least 1 Michelin star. Too much commitment for me, thanks. I prefer food trucks. We weren’t there for the food anyway, we were only walking through to get to the main station and on the train. This time because I gave them the heads up there was no fuss, we met one of the DB (Deutsche Bahn) workers and then get on the train for a calm 2-hour ride to Frankfurt. Whenever I buy train tickets, I buy the option that is not only for the train itself, but for local transit in the beginning and final destination. When my mom was first here, she was on one of the local trains without a day pass or anything and when they came by to scan the passes, she got a ticket instead. As a good human, I follow the recency bias to the T and now get day passes or whatever is needed when we use local transit. However, when I was here with my brother for a week in June (for the liposuction), we used all modes of public transit available and no one checked – maybe we got lucky all week. But no, it wasn’t luck. When my mom and I got off the train in Frankfurt Thursday afternoon, we took the underground train to the city for dinner and 2 guys went around asking to see the transit pass, both of them skipped me. They saw me, and even said hi, but that’s it. They assume I have the disability card that gets me and one other person to help me a free ride (I should, but don’t have this). Lesson learned – travel with me ;).

The rest of the day Thursday was marked by nothing, we just found a restaurant, ate, and then went to the hotel to rest for the injection coming up. I was not nearly as nervous as I was the first time around, but to replace the anxiety came the anticipation that accompanies “knowing what’s coming.” It’s hard actually to truly remember any pain, for me at least. I know the liposuction was painful at times and wildly uncomfortable (I wasn’t fully sedated), but if I had to do it again, it would almost be like experiencing it for the first time. Thus was this injection, I knew it wouldn’t really hurt, and imagining a needle in my back hurt more, it was like the pain of someone tapping your forehead repeatedly, not quite the same as breaking an arm, but painful. To begin, I’m lying on my left side on the table in a gown with an open back. The most painful part came when my doctor made the marks on my back with what felt like a calligraphy pen, ouch. We joke around for a bit until it’s time to put the needle in, then I’m quiet. As the needle goes in, I only feel it on the skin level, nothing deeper, and it’s not bad at all. I can feel it the whole time so I try not to move because if the needle hits a nerve it could make my leg jump and make it all move more. Finding the spot to inject takes a little educated guesswork, the first time I got the injection, my doctor hadn’t got the right spot until the second attempt, this time it was on the first attempt. As she’s injecting the stem cell secretome, I can feel a cold rush on my left hip and thigh, similar to how you can feel hot tea in your body on a cold day. They took a picture and that was it. I went to lie down for an hour, then got up, washed off the orange stuff from my back (anti-bacteria stuff or whatever it’s called), and then we left. An honorable mention while on the topic of this injection, you may recall that I had my doubts about the first injection given that I have yet to feel any difference, the injection took 2 attempts, and the doctor asked me if I felt anything during the injection and I didn’t (I took this as a bad sign), well, I asked about this. I asked if it’s even possible for an injection to “miss the mark,” the answer is no and that’s great, except now there’s no scapegoat for why I don’t feel anything yet. Worry not, I will continue to justify why I don’t feel anything with any and all reasoning I can find to keep my hopes up.

As we now know, I take risks. When getting underground for the train, there are two flights of stairs & two escalators. The first one leads down to a platform that’s useless for most of us, and then the next escalator leads down to the train platform. Upon arrival at the main entrance at the ground level, the down escalator was working but not the one back up. Not a problem because I’m going down and we do just that. It’s a short short distance to the next escalator and finally, I’m met with bad luck, the second down escalator isn’t working, and I can’t go back up. This royally sucks, but it’s really not that bad since going downstairs is fairly easy. Without hesitation, I go down the stairs with my mom behind me and a random guy that came to help although not much help was needed. It’s been worse actually. There was one time when I was at university in the electrical engineering building and the elevators are known to stop working, so sure enough they did. It was late at night and I was on floor 6. I went down all of them, on my own. I broke a sweat and my arms were a little sore from grabbing the handrail with intent, but it was manageable. Nothing beats the determination of a university student who just wants to go home after being on campus all day.

(Interlude again? Or whatever)

One of the most important things that happened was getting an email from Nils (at Cyberdyne) about a physiotherapy place. I had previously asked him if he or anyone at Cyberdyne knew of someplace I could go for physiotherapy because it’s tough to find it here. It seems different from how it is in America because some places, when looking through their webpage, seemed more like a beefed-up personal trainer. Whatever it is, none of the places I found seemed equipped to help me move my legs – I don’t care how, but I want them to get some movement. Nils, hero of the day, sent me an email about a place that has SCI experience and that they’re available on the 28th, I’m guessing he talked to them about me or something because his email was informed in that way. I got a doctor’s note and emailed them the following Monday (2 days ago as I write this), I haven’t heard back but I’m hoping the 28th will still work. The day after getting that email from Nils, hero of the week, I get another email from him that says there’s a new thing they could try: instead of connecting the electrodes to my legs to give the exoskeleton a signal to move, we connect the electrodes to my ARMS. I would do a sort of swimming motion with my arms and have the exoskeleton move, trippy. We scheduled to do this next week but I got an email today that one of them will be on vacation, so it’s pushed out. Obviously I’m happy, I can’t look a gift horse in the mouth and wish therapy were sooner. But I do wish it were sooner, it’s like riding a snail into battle.

After the whole escalator ordeal, we went to the Frankfurt main station, we had the train back to Bochum later but went earlier to pay for that ticket my mom got a few weeks ago. We went to the information desk and they pointed us to another information area, and they pointed us to some building outside of the station. It became frustrating that we couldn’t just pay for the ticket. It was useless looking at the little card they gave us with a small picture of a map to show where the building is, we walked way too much and couldn’t find it. I scanned the QR code on the card to find out I could pay online the whole time, so that’s what I did. We got some food and then came back just in time for the train. The Frankfurt main hbf is a nice big station and looks pretty cool, but it smells like piss, it’s a bad first impression for anyone coming to Frankfurt by train.

Saturday and Sunday were especially unspecial, not much happened. We went to the gym Saturday to sign up but no one was there, so we went back out into the city but it started raining. Not the light rain, but rain you could have a shower in. We found our way to TK Maxx, bought some body wash and toiletries, then went out to eat. It was fairly warm despite the rain, so we found a place to sit outside and eat. The rain had stopped and I decided it was time to get a few more clothes, my decision was influenced by an upcoming date on Monday and I didn’t want to wear a gym shirt that says “STEEL” or a work shirt.

Monday was the day of the gym, finally. We went in, found the woman working there, and said we want to do a membership for a few months. Unfortunately, after all the turmoil of choosing this gym, since it’s the least inaccessible, a German bank account is required to sign up. Of course, I don’t have one and I can’t get one, so she messaged her manager to ask about what other forms of payment would be accepted, so I just stayed quiet, off my phone, and waited. In situations like these, I find it best to be quiet and let them go through the stages of thought. Eventually, the best thing she could do was give us a free month, but no more. Even though the next week I’ll be gone doing a little traveling, I didn’t want to delay and it’s not on me to negotiate when this free month starts. In negotiations or anything of the sort, the one who cares the least has the advantage.

So, I had a quick workout, went back home to shower, and then back out to a cat cafe. It reminded me of the cat cafe in Appleton, Wisconsin. In Germany we say Katzentempel, and it’s vegan, so I had to choose between fake meat, veggies, or a smoothie bowl. You should know what I chose. Later that night I called my brother to talk. It’s not surprising how important socializing is, but it is surprising to feel it for yourself. Here in Germany, there is no small talk, there is no chatting to people, I just go about my business and don’t talk unless it’s with my mom. So, it was nice to talk to someone I could land a few good jokes with and talk at a depth I haven’t been able to, it helps that my brother and I are very similar.

Tuesday and Wednesday happened but only if you measure time by the calendar and not by how you feel. The two days collective felt like a few hours, so I’m skipping these for brevity, since that’s obviously what I’m going for here.

Going to the stadium (Thursday):
I shower and get ready just in time for when Pierre came to pick me up. He had messaged me the day before asking if I wanted to go back to the Veltins stadium (where we saw Shalke 04 play) for a stadium tour. The tour is a sort of warm-up to a little ceremony for a volunteering group his daughter is part of. It’s just him and I in the car, his daughter is taking the transit to the stadium with a friend, so I employed my best non-boring small talk. Every so often one of us would get stuck in translation but it was casual talk that allowed me to also observe where we were. There aren’t as many round-a-bouts as I expected and it feels like all the cars are the same – smaller, hatchback, and kind of ugly. In between the smell of smoke, I picked up a smell that I couldn’t quite pinpoint, so I focused on it for a few minutes until it came to me – crayons, it smelled like the waxy paper of crayons. It took a while to notice, but Pierre and I had somehow matched with purple shirts, dark blue jeans, and Adidas sneakers. This is a crazy coincidence because I only have four shirts. We got to the stadium 45 minutes early and walked around – he smoked and I only breathed out of my nose. When the time came, we went into the little museum that showcased the home teams’s trophies and history. It was hard not to look at the dates and think of WWII. More and more people came in and they were mostly girls, I guess the volunteering has predominately girls (high school age). Nothing about it except that it put me in an awkward demographic of being the only person there that’s not a parent and 7-9 years older than all the kids. Not to mention I was the only one there who didn’t understand anything that was being said. Mac Miller once said ” It’s more when I’m standin’ in crowds that I’m feelin’ the most on my own,” nothing describes it better. I’m normally extroverted, but I’ve learned now that being extroverted is only possible if there’s a society you can extro your vert upon. After going through the little museum and Pierre explaining to me the history and such (he’s a huge soccer fan), the whole crowd of kids/parents split into two tour groups. We went out to the spot where the field was and Pierre gave the translation that the field (on tracks to go in and out of the stadium) was like 1.5 or 2 meters thick full of soil, electrical, and mechanical components weighing an easy 11k tons. We then went inside to see the stadium and whatever else, I’ve never been on a tour where I can’t understand anything, so I just have to look around on my own until Pierre gives me the cliff notes. We got to the part of the tour where there are only stairs to go down to the actual arena floor, I knew there would be some stairs but not this many. It was uncomfortable because at the bottom of the stairs were all the kids that would be watching some random American get carried down and then back up. I didn’t care enough since it was not a tour for me, I don’t even like soccer that much, and I didn’t want to have these guys carry me up and down 2 sets of stairs. So, I stayed up and went into the conference room where the players are up on a podium table with microphones and such. The other tour group was there so I thought I would join them for wherever they go. They began to leave and headed downstairs. Fine by me, I get to do my own thing now. I stayed in the conference room for a while thinking I would just stay there, then two girls from the group came back in and asked me to take a picture of them up at the conference table. I only knew this is what they said because they gave me a phone with the camera open and made some hand gestures. I didn’t know anything they actually said, but I tried to be quiet or only say something in German so they don’t think I’m not-German (just for fun). I take the picture and have the most legitimate exchange in German that I’ve had:
Danke (them)
Bitte (me)
Tchüss! (Both)

I then proceeded to sneak around the whole stadium, going to the upper floors where the box offices are (private viewing rooms for the game, usually with catered food), I checked all the doors but they were all locked. Just going into places that look like I normally wouldn’t be allowed such as the kitchen and whatever. It was fun to feel rebellious. By luck, I went back down to the conference and found my original tour group. They were just leaving to go to the ceremony. Good timing.

We got to the ceremony room, it was just a fancy area with some tables for the ~50 of us, a little podium for speakers, and the catering team that works at the stadium complete with their work uniforms – an Addidas jersey. We all know how boring a ceremony can be when people speaking get caught up with what they want to say instead of what people want to hear (the latter is much more concise), there is another level. I did not understand anything, and multiple people spoke for a total of 1 hour or more. The mayor of Gelsenkirchen was there, which is very cool, she was late because her house, as well as others, had flooded the night before from the rain that was so powerful it would make you just watch it from your balcony in awe. Without hearing her, I could feel the politician in the way she spoke and had the room a little more captured (or maybe I imagined this, I was very sleepy). At some point, I smelled curry and I was not surprised given my experience of finding curry offered everywhere. This inclination was confirmed when I went to the bathroom and could still hear the woman talking through a speaker in the bathroom. I pulled out my phone and tried to translate what I was hearing and sure enough “Today we have salad, bread, and currywurst. Self-serve…” It turned out to be curry ketchup (a real thing in bottles at the store) with chopped-up… hot dog things? Didn’t seem like a proper bratwurst, probably not my best introduction to currywurst. After eating, I awkwardly said some form of goodbye to a few people and then Pierre dropped me off. It was only when I got into the Airbnb that I realized I left my phone in his car.

The next day, I left for a little trip around Europe.

PS: I read a lot of biographies or non-fiction, and it’s amazing how many quotes there are. Sometimes the biography will use excerpts from someone’s journal, and whoever wrote the journal had written many parts of a conversation on such and such day. I definitely can’t do that unless I write it down at the exact moment, and even then it might not be verbatim. So I think all those quotes are inexact. It’s never been about the words anyway, it’s about how you feel that’s remembered.

PPS: I still don’t notice any difference, which is beginning to concern me.

Getting to Cyberdyne (physical therapy) was a small task but not easy. After getting off the tram and figuring out which way to go, the next issue was finding this place. There were no signs or anything obvious to tell us that the buildings we walked by had anything to do with anything. We were early though (German punctuality) and after a few minutes of crossing the street and going up and down, we found the front doors with a small sign that said Cyberdyne. I really had to go to the bathroom as soon as we went in, why I didn’t go is beyond me. I waited for some odd reason, I guess just to settle in first and say hi. It was quite empty and had an echo. There was one other family there, seemed like they had just finished a session because the guy in a wheelchair went into the bathroom. I waited for a while until realizing he was going to take a long time, so I went into the women’s bathroom since it’s just a single-person bathroom anyway. By the time I came out, I was a few minutes late for the appointment (American punctuality) but it was no rush and we got started right away. It felt weird to talk to them while everyone else could hear my echo. It makes a genuine conversation hard when you know you’re being listened to, but I told them about why I’m there and how I got here. The reason for me to choose Cyberdyne is simply that it was recommended by Anova (the stem cell place). Finding physical therapy that has experience and equipment to help me walk again is an endeavor nothing short of finding a good place to eat in Denver, and besides, they have a robot exoskeleton, that’s enough for me. What I didn’t know is that the possibility of not qualifying for using the exoskeleton, evocatively named HAL, was legitimate. In my first emails with Cyberdyne, they mentioned an initial session to see if I qualified but I thought it was just routine and to make sure that HAL wouldn’t be too big or small. It turned out to be much more than that. The first thing they did was check if I had any degree of muscle control, and at the beginning, I said “You can just put down a 0 for everything” but we tested it anyway. The guy would have a finger on my leg, and I would try to move it while he checked for any twitch of the muscle. We went through all of it, and they were all nichts, null. Maybe it was the empty room and echoes, but it felt more somber after each 0 was put in the chart. I was told that HAL is not a passive therapy, it detects signals coming from the legs, amplifies them, and uses them to move the exoskeleton. Despite the foreshadowing of all those zeros, we put some pads on my legs (quads, hamstrings, glutes) and connected them to the device to see if any signals could be detected. There’s A1-A10 and B1-B10, A1 means the signals are very strong so it doesn’t have to be as sensitive while B10 is very sensitive. We were at B10 and the only signal we got was small. We even connected it to the exoskeleton to see it jerk around while I tried to extend or curl my leg. The whole time the guy is saying “Come on! push.” I very much was, and I damn near pooped trying, but of course, he couldn’t tell, and neither could HAL. The only conclusion, then, is that I don’t qualify. There is no passive mode to just have the exoskeleton move my legs and give me some electric juice to the muscles, no, it has to start with me. As we took off the pads, Nils was telling me that it won’t work and we can’t do it, he’s very sorry and so on. I thought maybe I should cry because this is actually devastating, and Nils looked like he might too. But I couldn’t, I couldn’t even think of what to say so I was silent. This probably made him feel awkward or something because as a good friend would do, he kept saying the same type of stuff a few more times to fill the room, touched my shoulder and said sorry. I don’t remember what I said but I think it was something like “Well, it’s alright, let’s get these pads off.” I don’t like this at all, it’s a terrible situation but I’ve dealt with plenty. I know it’ll work out but I also know that it won’t happen by itself, I’ll have to make it happen. This is a lot more work than I wanted and does throw me off quite a bit. I booked my Airbnb for the whole three months I’m here, and even if I truly knew that there was a legitimate chance I wouldn’t be able to use the HAL, I would’ve had to buy the Airbnb anyway because if it had worked and I only got this place for a week, then how would I find a place to stay for the remaining 11 weeks on short notice? So now I’m kind of stuck in Bochum and need to find a new place to go, but at this exact moment, we’re leaving Cyberdyne to finally get to the Airbnb.

We went up and down all the wrong roads before we found the front door to the Airbnb. There are three steps to get in the front doors to the apartment building and the unit we’re in is on the ground floor, all one level. I knew there would be steps but I thought they would be easy for some reason, they were not. They never are. Luckily, some people nearby had come to help, but the feeling of urgency that came with all the hub-bub made it harder still because they didn’t come and ask how they could help, they just started grabbing and lifting, which is apt to make an uncoordinated mess, but I did get up the steps. I don’t remember what I did for the rest of the day. Pretty sure I slept and then ordered pizza once I woke up. It was a large, but not an American large. I knew that those stairs were not going to be feasible for the next 3 months to get up, so I reached out to the host of the Airbnb and asked if it’s possible to get a piece of plywood or something fairly cheap to use as a ramp, and the next day he came by with some other guys and we figured it out. Our host has been really great. When I was first finding a place to stay, I needed to know the width of the doorways to make sure I could at least get in the unit and at a minimum to a bathroom. Airbnb doesn’t allow people to send pictures before making the reservation and I was at a loss for how to send my email because Airbnb prevented that too, but a few hours later he must’ve searched my name and found my website because he was emailing me pictures of the doorways with the width.

Thursday I stayed in and looked online for a new physical therapy place, plus it was raining a lot, so no reason to go out. The ramp/piece of wood was delivered Friday morning and it’s a glass of ice water in hell. Something I should mention now is I play close to the fire and somehow I haven’t gotten burned. It’s not great and I’m not bragging, but I have an unshakeable belief that somehow things will end up going my way or I can always figure it out, and so far, I have. This is why I go to the trains and tell them I need assistance about an hour ahead of time, not 48 because I’ve always gotten on my train. And why I book an Airbnb with steps at the entrance. Probably one of the “dumbest” things I do is never bring my shower chair with me. You should know what a shower chair is, it’s in the name, and the one I have is $600 and MADE for traveling but somehow completely missed the dunk. Not that it doesn’t work as a shower chair, that’s pretty easy to do, but it’s not travel-friendly. It’s just too bulky and heavy. So, in lieu of my minimalist tendencies when traveling, I prefer to just rely on my luck and problem-solving skills. The hotel in Frankfurt had a shower chair (lucky me) but the Airbnb didn’t (time to get creative). What the Airbnb does have, though, is a plastic chair. A one hundred percent plastic dining chair, which is perfect for a shower and happens to fit squarely in the tub. Problem solved. Friday was also a day of laundry, where we found out just how spoiled we are in America to have a dryer. Air-drying clothes is fine, but we need to plan ahead because it took the whole day. Between laundry and cooking food, our Airbnb host, Pierre, messaged me about going to a soccer game, the first home game for Schalke 04, a widely known team with electric support. He told me about taking me to this game when I first booked the Airbnb a few months ago but now the time had come. I’m not sure why he did this, maybe because I’m staying for 3 months, I’m cool, or he does it for any guest, but he and his daughter (he’s married, but his wife maybe isn’t into it as much as they are) picked us up Saturday afternoon and we went to the game. He paid for our tickets, and the cool thing was that my mom got her ticket free for being with me, and my ticket was reduced from about 40 euros to 10, and parking was up close and reduced. He went through a lot of effort to call and figure out where to park and how to get the handicap tickets and all that –  truly went out of his way to give us this experience. Great guy. During the drive there, he told us all about the history of the team, we walked around the stadium and then found our seats. The stadium is massive, there were small fireworks set off in there, and what I found to be interesting is that the field is on tracks and is pulled outside of the stadium to keep it fresh. It’s called Veltins-Arena if you care to search it online. I enjoyed it but my face didn’t show that, I struggled to turn on the more sociable part of myself that night. Maybe because I slept all day until 4pm or maybe because I was still thinking about what the hell am I gonna do with this physical therapy situation. I couldn’t get myself to talk or chat much, it’s not easy when I’m not sure how much I can say before there’s a misunderstanding, along with just not feeling social. When I was entering the stadium, they had to do a bag check and such. A woman was saying something to me and I just stared at her. I probably looked like an actual idiot because she still didn’t know I don’t speak German, so I stare, she repeats herself, and I stare. Pierre’s daughter eventually came up and said “[inaudible, inaudible, inaudible] americano, [inaudible],” and then told me “She’s saying to put your ticket in your pocket, so you don’t lose it.” Ah, right. Then when the guy had me put my arms out to be patted down, they made my day by saying “Very muscular, like Ronnie Coleman.” Normally I would’ve said “Yeahhhh budddaayyyyy,” but instead I just awkwardly gave some form of thanks and went off. The area I sat at was just an open aisle with numbers like a parking lot. I’ve never seen this many people in a wheelchair out in public and it made me wonder, do they all struggle as much as me or do they know something I don’t? I once wrote about how the wheelchair makes the world smaller, and it really does, it’s like a videogame with half of the map locked. America is the best country for accessibility, and in Germany, or even Europe at large, is just luck. So, do all these people in a wheelchair (not all necessarily spinal cord injuries) absolutely struggle to go out and do anything? Because it’s only ever by luck I find a bathroom I can use. The game was loud and fun, and even though I haven’t seen much soccer, this game seemed off. There were moments in the game where the players weren’t running, loitered behind, seemed confused or lost, and the goalie was shouting at them to go move up and play! We still won.

It’s widely known that Europe has a much better work-life balance with a lot of people getting three or four months of vacation annually, another part of this relaxed culture is that Sundays really are for resting. Nearly everything was closed except a few donner places, it was also raining heavily. Needless to say, but I’ll say it anyway, I stayed inside Sunday and slept. As I should with the stem cell secretome floating around in my spinal column hard at work (I hope).

Since I sent out emails to physical therapy places on Thursday, Monday is the day I expected to get replies. I got one from Nils at Cyberdyne saying he doesn’t know of any but will ask around. Other than that, nothing. I’ll have to call these places and hope they speak English. In the meantime, some other things need to get done such as looking for a gym and shopping. Monday, like any other day, I woke up around noon and we left around 2pm, on our way to the gym, oddly called McFit, it was passive-aggressively uphill a majority of the way there, making me wonder if I’d want to do this every day as it’ll only get colder. This is one of four gyms I would eventually check out, and there are only four gyms to check out in Bochum for reasons of location and accessibility. McFit is the closest gym to me, and I know I’ll get a lot out of it since working out is therapy (plus a good way to meet people). The gym is 2 floors and above an Edeka (like Kroger). The signs all pointed to an entrance that was just the stairwell, which was discouraging. We went into Edeka and found elevators for the parking garage, went to the 2nd floor, out into the parking garage, and found the entrance for McFit. This was a relief because Google Maps said the gym is wheelchair accessible, so we went in to ask about the rates and have a tour. It turns out that the second floor – the free weights – is only accessed by the stairs. We took the elevator up to the next floor and confirmed this. This will not work, except as a last resort. We went to Edeka below to find toiletries, we got shaving cream and hair oil, but no nail clippers. I needed nail clippers badly. From there we went into the city center, which is walkable and exactly what you’d expect in Europe with all of the main shopping and big buildings in this one area. In Europe, there are apothecaries (Apotheke) with a green cross (+) and it’s an American equivalent to a little pharmacy. We went there first because surely they would have nail clippers. After searching around this little store, we found some at the price of 24.10 Euros! Almost made me a devoted nail-biter. We left as fast as we could and found a Starbucks because I had to go to the bathroom, although it’s a reliable place to find a public bathroom, the accessibility is not reliable. I could hardly get in and shut the door behind me, and it wasn’t a one-person bathroom – there was one stall and one urinal –  but I couldn’t get to the toilet, so I just had to stay at the door (I had no choice), and hope no one tried to come in. No one did, and I was fine until trying to get out and I nearly got stuck doing a 20-point turn except that I can do little jumps with the chair. A woman walked by while I wiggled my way out of the narrow corner of the hall and that was a little embarrassing, I think it was because I fell in love after only seeing her for a moment, but I’ve fallen in love 3 times on a short tram ride before and at least 57 times since being here, so I’m over it now. The next two stops were Saturn (it’s like Best Buy) to get plugs and then TK Maxx (TK, not TJ) for a nail clipper set (5.99 Euros). Around the corner from there is another gym, UniFit, gym two out of four. As soon as we enter, the floor is aggressively angled down like a big ramp, so going down is fun and fast, but not up. Once down, we find the front desk, I ask the woman if she speaks English,

 “A little.”

 “I want to come to this gym.”

 “The gym is only for students.”

Alright, well back up that ramp and cross off this gym from the list. From there it was back home to finally shave, clip my nails, and write. At the end of the day, still no replies from any physio places.

Tuesday was a strong start at noon with two goals, go to the train station and tell them I need assistance for trains I’m taking to Frankfurt and back, and find more gyms. Yes, this time I actually came in and told them I need assistance 48 hours ahead of time, and the woman helping was very nice, but she took a long time to make this adjustment compared to when I come in last minute to tell them. Oh well, the real reason I came in is because I wanted to buy a Bahn Card, basically a one-time payment for a card that’ll give me a 25% discount for the next three months. The tickets for myself and my mom, from Bochum to Frankfurt and back, is ~$350 total, now multiply that by eight. This 25% will help a lot. If I were a German citizen, I could get a disability card and she could travel with me for free, but the world we live in is all about documentation, and unless I can prove with a piece of paper that I’m disabled, Germany won’t recognize it. Even if America had something like this, Germany wouldn’t recognize it. So, legally, I’m not disabled. Maybe the law will manifest itself and the stars will align (in the form of a council convening) and it’ll help me walk again. It reminds me of when I’m at a restaurant and ask for something off-menu but still with the ingredients I see on the menu and they all but have a breakdown, as if we’re not human. Maybe we’re not. Not anymore.

Now I had everything figured out, including the irrefutable truth that the only way to get the assistance needed for the trains is to call someone in the Deutsche Bahn service center or run the gauntlet by showing up an hour early and pressing them. Next up is checking gym three of four, it’s right around the corner, up a hill, and then up some stairs to get in. Damn, alright, continue up the disrespectfully steep hill, and now where to go? All I see is the end of the building, oh wait there it is, down a steeper hill leading to a parking lot and then into an elevator just to go back up. We go in, and sure enough, they only do 1-year memberships. We left within a minute. At this point, I should be convinced that I better just call before going through the 7 tasks of Hercules, but I don’t have much else to do, so whatever. Paying a 1-year membership is not out of range, financially, considering I really need to exercise (along with physical therapy), but the up down up down to just get to the gym is too much considering all of what I’d be paying. I now have to put all my hopes into gym four of four. The rest of the day we went around the city center and bought a sandwich that looked innocent enough but to our surprise had curry sauce in it. Not that it was bad, but Germans love their curry, there’s even curry ketchup in the stores. We also checked out a second-hand store because eventually my two t-shirts, two pants, and one hoodie won’t suffice, but I’ll wait for now.

Stop reading here.

Now it’s time to go a little deeper because I’m writing this for me and if I don’t talk about how I’ve been feeling, I might implode. As of my writing this sentence, it’s only been a week since I landed in Frankfurt, but emotions stretch time – slow it down in moments of surrealism and speed up in moments of thrill. After realizing I would need to find a new physical therapy place, time has slowed down. Each day dragged on as I helplessly search and send emails to any feasible physical therapy location nearby, hoping I can find just one that has the experience and equipment to help me. There’s a strong feeling of wasted time, I just got a stem cell injection for Christ’s sake, why am I doing nothing all day? I need to be working on what I came here for. But I’m not, and just like when a kid skips school and the parents say, “If you can’t go to school then you can’t go out and play,” I’m not in physical therapy, so I can’t do anything else. I could, but I can’t bring myself to. Without work and the gym, I have no reason to get up. I often think I should start a little project – programming or something – but no, I don’t know what to do. I can’t bring myself to care about anything else, there is no passion, no motivation, it’s all but been beaten out of me (I believe it may be too early to say this). It’s easy to be motivated when working towards something, like when I was in rehab just after my injury, but I can’t even say I’m working towards it, I’ve just gotten the injection and laid back like how people think that things will just happen, but no, people happen to things. When we do go outside to walk around and explore Bochum, there is no feeling of travel. No urgency to see what the city has to offer and pack the day with museums, parks, and memories because I live here now and I’m not on vacation. When I was in Germany with my brother for a week when getting the liposuction, we hardly slept doing so much throughout the day. This isn’t like that, I’m not traveling. I’m on a mission.

It’s hard to tell, but I don’t think I feel any difference since the first injection, and even if there is a difference, it’s not significant enough for me to notice with confidence, which is as good as saying there’s no difference. Would it be better if I were in physical therapy?

Even though I’m with my mom and I get a lot of messages of support, there’s still a lonely feeling about all of this, like sailing to an island for treasure and losing the shovel as I swim to shore. I’m still on the island, and the treasure is still here, I know I can make or find a shovel, but I still can’t help but feel melancholy. Like I should cry and give up all but for a feeling of hope and optimism we find in the depths of the trenches – maybe this is the way Shackleton felt watching the Endurance fall into the grips of the ice. It’s only been a little over a week since the first injection and I still have 11 weeks and 8 more injections until I come back home, I know that I’ll figure this out, but damn I wish I didn’t have to.

PS, let it be known that I’m writing how I feel because this is what helps me the most, not talking about it. I don’t want to talk about it, I feel better now after writing all this, but that doesn’t mean I can delete it. I’m being vulnerable… for no reason, really.

PPS, I learned my lesson a long time ago and I advise that if you’re ever feeling sad, don’t listen to sad music, listen to music with lyrics about being the best to hype you up. That’s what I’ve been trying to do.

If you’re a certain type of person, you’ll be familiar with the ship of Theseus. If not, here’s the basic jist: Theseus has a ship, over time the parts are replaced and after a few years every part of the ship has been replaced, is it still the same ship?

Here’s how the conversation went
You’ve heard of Theseus’s ship, but wait til you hear about his brother

So are you the ship now?

Just that Theseus’s brother changes over the years, is he the same person?

Good question indeed. Technically humans are always turning over atoms. Even your skeleton is fully replaced every like 10 years. I don’t think it’s matter that makes a person who they are.

True, but even personalities/behaviors change

What doesn’t change?

No idea haha, Social Security Number (In the USA)

Neuronal connections. They must be the basis of any change or lack thereof. The wires can be replaced over time, but it’s the way the system is wired that gives it specific properties

[Note: this is also a common thing to hear about the ship, that it’s the arrangement of parts that make the ship, not the parts themselves because the same wood from the ship could easily be a house]

That’s very true, and I wonder if you can define a person by what doesn’t change. Such as memories or knowledge. It could be DNA or fingerprints too. But that’s kind of like an internal analysis of being the same person. I’d say more important than that is that person #1 is whoever person #2 thinks they are, regardless of being able to know DNA or neuronal connections.

That’s a good point. A person is through time, so as time continues and they change, it leaves a trail of their personal history with the neuronal connections or how people have perceived them.

Yeah, so I think asking if a person is the same after changing is the wrong question because a person is the changing.

Introduction

I have to start out by practicing gratitude because in the day-to-day trenches of life after university (dare I say adulthood), I don’t often reflect on just how fortunate I have been. It’s breathtaking all the individuals who have supported me and gone out of their way to advocate for me. From the smallest things like a stranger running across the street into the gas station parking lot because my wheelchair rolled away from my car and all the way up to a mentor who quite literally gave me opportunities that became my quintessential tipping points.

After recovering from a deep delusional optimism that I would walk again in just a few weeks after my injury, I knew the only next hope was stem cell treatment. I didn’t and still don’t care for exoskeletons or anything like that – I’m not trying to “walk” again in that sense. What I want is to take a shower standing up, and to travel freely without having to pack so many catheters such that I look like I’m on the silk road with all my baggage.

After searching online, I found a place in Germany that does stem cell treatment for spinal cord injuries. I reached out to them almost 2 years before I would get my first injection. I think I’m the first person they’ve had do that. The plan was to graduate, get a job, save money, then get the injections, and try to smell the roses along the way without getting hurt by the thorns too much.

The stem cells are actually a stem cell secretome and there is an important difference. However, it’s only important if you’re a doctor or a stickler. I’m neither and it’s all Greek to me. The stem cells are derived from my adipose tissue (fat), which means I had to get a liposuction, and that means I had to gain some weight. For about 10 weeks prior to the liposuction appointment, I ate. I ate unhealthy and more than my body could take on some days. I felt sick and dull, but I bench pressed 325lbs and the liposuction was successful.

DISCLAIMER:

The following is the first of many incomplete accounts of my time in Germany getting stem cell treatment. Yes, incomplete because I expect this to be read by anyone and there are some things best left out. But this is still the truth, and it takes a great deal of courage to tell the truth and run it up the flagpole.

Chapter I

Saturday, after doing the familiar pre-flight packing and getting ready, my brother drove me to the airport. We just talked about whatever brothers talk about like passing the other cars and whatever. It’s a weird feeling that I struggle to describe and even more so now that I don’t feel it anymore – the feeling I had the week before leaving. It was like anxiety on the back burner, I don’t have a kid and I’ll never be pregnant, but I would imagine there are some parallels. It’s a big life event, there is a lot of time leading up when you know what’s coming and approximately when, but still, it feels like unknown and surreal territory. I know what I’m doing and nearly everything I’ve done since my injury has been a calculated means to an end. Now I’m at the end, which is a new beginning (I hope). Am I excited? Not really. Am I hopeful? Yes, by default. In some weird way, I don’t think I have feelings about it – like how Neil Armstrong said he was just following orders, I imagine myself following the orders of my higher consciousness saying, “You must walk.” Yes sir. All this is my internal dialogue in the car, trying to figure out how I’m feeling and why. Wondering why my heart isn’t racing with passion as my brother drives me to the airport. Maybe I’m too nonchalant about things? I guess just keep going and it’ll get better. He drops me off at the airport and just as I believe all things in my life work out for the better, I checked my massive suitcase full of catheters seemlessly at an outdoor check-bag center for United Airlines. This was ideal so that I didn’t have to go wait in line to check my bag at the check-in counter.

After saying bye to my brother who will now be living alone for the first time in his adult life, I went into the Denver airport with my backpack on my lap. To get to the floor below where the security is, I went down the escalator because I like to rebel in my little ways. The elevator is just too slow for me. Getting through security was easy with Clear and TSA pre-check. My bag got pulled to the side and I don’t know why. The guy looked at the screen, looked in my bag, went to talk to the x-ray person, then came back and gave me my bag. My guess is that it was the creatine I brought. I got to my gate pretty early and the plane was delayed as well, so I just sat there listening to an audiobook until it was time to board. I got on first and everything was as expected – the small aisles, uncomfortable seats, and bubbly flight attendants. I always struggle to sleep during flights, and this one was 10 hours direct to Frankfurt, ouch. For dinner we got butter chicken, and it was actually good. I watched a movie in German with English subtitles in my attempt to learn a bit of German. I’ve been using Duolingo but I’m only in the early stages where my conversations can only consist of me ordering Kaffee und Milch and the barista replies, meine Schwester ist nett. Maybe ich bin ein Berliner if we’re feeling political.

After the movie, I had to go to the bathroom. Doing this on a plane is difficult for everyone, and I’m no exception. I ring the bell thing and the flight attendant comes, I say I need an aisle chair to go to the bathroom. She says ok and “let me get the bathroom ready by taking down the wall.” Now, I’ve flown a lot and have gone to the bathroom during my flights a lot. Usually what happens is I impress anyone watching with my agility and borderline contortionism with how I transfer from a little aisle chair barely peeking into a bathroom with the same dimensions as a middle class chimney. Needless to say, this was a very nice surprise when the wall between the bathrooms were collapsed such that I was pulled into the bathroom WITH the aisle chair, the flight attendant left from the door behind her and the door in front of me was shut. During the whole process we all joked around a little and by the time I was back in my seat, I knew I had them where I wanted ‘em. So, when they asked if there’s anything else they can do for me, I said “If you have any more of that butter chicken, I’d love that.”  The flight attendant came back a few minutes later to report that they’re all out BUT one of the first class people didn’t have their steak, so I got a steak. It was good.

The lady sitting next to me leaned too far over my food like I was going to share and said, “That smells good.” Yes it does, now get your face away from my steak. We ended up talking a bit more and she’s a nice lady, but oh boy she was coughing like a toddler – no covering up and really pushing it out. I’m not sure if she was sick or had a cough for the whatever-reason older people cough more. I wrapped my airline blanket around my face like I was on the silk road. The last thing I want is to get sick before getting my stem cell injection. She eventually put a mask on, but it seemed far too late for that, and I really wish she hadn’t leaned over my steak.

Once I got off the plane, I made my way through customs (skipping the line of course) and then out to grab my luggage. There was an airport worker with me the whole way leading me through the airport, so my post-flight melted brain didn’t have to think. I met meine Mutter at the entrance of the airport and we made our way to the underground train line to take us back to the hotel. I knew very well the train we were on from when my brother and I were in Germany about a month ago for the liposuction, we got very familiar with the transit system and walked around so much we could’ve been locals. It was a quick walk to the hotel after getting off the underground train.

The rest of the day is a blur as those days traveling always seem to be. I know we struggled to find food because we were in a part of the city that is full of buildings and is somehow empty as ever – no shopping, no grocery markets, and for food all we found was a food truck and a McDonalds around the corner. I’m a little ignorant of how to culturally identify foods, but I think the food truck is Turkish. We got some food from there and I think I took a shower and slept the rest of the day. The afternoon sleep was much needed but not without consequence. I couldn’t fall asleep that night, maybe around 2am I finally slept but somehow woke up wide awake at 5am. I hope you can’t imagine how badly this messed me up. I’m not sure what type of jet lag this is, but I’m not sleeping during the Colorado nights and definitely not sleeping during the German nights. What this meant was that on Monday when my first stem cell injection was scheduled, I had barely slept and felt pretty horrible. After eating what little food I could stomach, I took a shower and checked my phone. I had a missed call saying my injection appointment needed to be rescheduled to the next day. I didn’t like this because I would have to book the hotel for an extra day and buy a new train ticket, not to mention the suspense was twisting my stomach. Instead of getting the injection on Monday, my mom and I went to downtown Frankfurt for lunch. The lunch was good and we didn’t really care to do much else so we headed back to the hotel to just relax, plus it was close to my 2pm bedtime. If you know Detroit, I think Frankfurt is kind of like the Detroit of Germany – that’s what I’ve gathered talking to some locals.

Getting to the hotel from Frankfurt was not without some effort and frustration. The thing about the German public transit (in Frankfurt), is that the underground trains are sometimes very hard to get to. Given the nature of an underground rail, there are three ways to get to it – stairs, escalator, elevator. There are always stairs, which can be used for going down (as a last resort). The elevator is obviously the choice of champions, but they are all too infrequent or out of service to be relied upon. Escalators are nice, much faster, and more frequent than the elevators, however, these are sometimes not working or there is only one and it’s not going my way. When my mom and I wanted to leave Frankfurt, the place that we emerged from had an up-escalator, but only that. Same with the next 4 access points we found. We found one with multiple escalators and behold, the down was out of service. At this point, I had to go to the bathroom, which is another pain point in Europe. I swear that I will never pay-to-piss, especially when a lot of the elevators smell like someone didn’t want to pay. The most reliable free-to-the-public bathrooms are Mcdonald’s and Starbucks, thank you America, but not always do I find them accessible. With all these people out in the city for the nightlife, is it safe to assume they know something I don’t? Maybe they know where the nearest elevators are. Anyway, in the midst of trying to find a way to get to the underground rail, which we did find around the corner, I did what anyone else would’ve done. Luckily it was raining and my pants were dark blue. Once we got back to the hotel, I did the infamous shower + wash-the-clothes-in-the-sink maneuver. I then slept and woke up around the time I would’ve liked to fall asleep. It’s 10pm or something and raining hard, but we’re hungry, and the only thing to do was go to Mcdonald’s. A lot of people don’t like going out in the rain and I admit it gets cold and isn’t pleasant, but I try to dig down to the root of why I think rain is bad, and I don’t have a legitimate reason to keep me from saying “it’s a beautiful rainy day,” every day can be beautiful, even if I can’t get a tan.  I didn’t get anything at McDonald’s because there were leftovers from lunch, but Mom got some frozen yogurt and apples.

That night, I couldn’t sleep. I’m not even sure if I did. It’s unfortunate that I’m in this sleeping predicament because I never really feel good, not even after sleeping from 2pm-8pm. The injection appointment was at 9am and we planned to take the train later that day (this was before we rescheduled to leave the next day). So, we woke up early, packed up everything, went down to the breakfast buffet, and walked to the institute for my first injection. Needless to say, I felt horrible. A mix of being very nervous and having not slept left the food in my stomach in a state of limbo – waiting to go up or stay down. Before the injection, I had some paperwork to sign, and I nearly did throw up from reading the all too descriptive explanation of the procedure. I stopped reading after the first sentence and thought I’ll just find out the old fashioned way. Once that was done, the doctor came to tell me the disclaimers of what could go wrong and what she’ll be doing in detail – there is no escaping the bliss of ignorance. I put in my earbuds and listened to some binaural beats for calming and did some breath work. Moments later, I went down the hall to put on a hair net, shoe nets, transfer into a hospital wheelchair, and then into a hospital bed where I changed into a medical gown/robe. When they were ready for me, I transferred to another table for the procedure, and they pushed me into the operating room. They had me lie on my left side in a fetal position, shaved my lower back, put on some orange anti-bacterial stuff (stains my skin and clothes), and then started marking. I had a heart rate monitor, and I could hear how fast my heartbeat was, surprisingly it didn’t seem to reflect how I felt. When the doctor marked my back, she really pressed in and because I couldn’t see, I kept wondering “is that the needle?” When it comes to doing something for the first time – something that’s expected to be unpleasant – there’s a lot of anxiety leading up to it, and in this way, I felt the pain twice. Maybe the second time will be easier since I know what’s coming, but that could be the same reason the second time is harder. I’m not sure exactly what happened but at some point a needle was put into my back and wow did that feel weird. It didn’t hurt as much as I thought, but she hit a nerve (which is safe) and my leg twitched. I could feel the needle roaming around like a fish navigating through a cluster of jellyfish. I think she was trying to extract some spinal fluid first to make sure the spot was good and then inject. The first time didn’t work and she tried one more time, maybe two more times, until she got it. The muscles in my back were tense as she was injecting the stem cell secretome and she asked if I felt anything. I did not, other than my back being tense which was just from the needle’s presence. This made me nervous, should I have felt something? I got back to the hospital bed and stayed there for an hour as part of recovery and in case anything went wrong. I put the binaural beats back on and tried to feel. I put all my thoughts into moving my legs and curling my toes. Nothing. I tried and tried to feel for a difference. However, this is not expected to work immediately, it could be a few days or weeks before I notice a difference in how I feel or if I can move. The rest of the day I rested, ate some food from that Turkish food truck, and of course struggled to sleep at night.

Getting to Bochum the next day was the same old song and dance as taking any train has been. I buy my train ticket online, there’s no way to indicate that I’ll need assistance except to call, which I’d just rather not do for some self-destructive reason (or just to rebel against their “call ahead” rule since it always seems to work out), so I just get to the station about an hour early and tell them my train and that I need help. They hoo and haw that I should’ve called earlier, and I just stay quiet. They say I might need to get on a later train or that I just won’t be getting on at all. I stay quiet. After talking to some colleagues, they say ok we can get you on. I say danke and go to the train knowing I would’ve just pulled myself up those steps anyway (I’ve done it before). The train ride was very turbulent and given that I still had my issues with eating breakfast after a sleepless night, I could only think of the path to the bathroom and what to do if it were occupied. The first order of business in Bochum was to find the physiotherapy place for my appointment, the hardest part was adapting to the slightly different transit system. After walking around like a crackhead, we finally found the tram to get us there.

What have I done to deserve anything, good or bad?

Almost any belief that anyone has will put the deservedness out of the individual’s control – be it a god or determinism + randomness. But either way, how do we know that we deserve something? Do we actually deserve anything or do things just happen to us as they have and do to so many others?

The title here says two things – nothing owes me anything (i.e. I don’t deserve anything) and nothing owes me everything (i.e. the “nothing” does owe me all things). Confusing in a way, but just don’t think too much about it. I’m trying to start a conversation around two systems.

• American emphasis on individualism
• Chinese emphasis on collectivism

These are just two examples so you can get an idea of systems that function in these ways. Here’s an example:

• I’m a wheelchair user (let’s say the only one, or one of very very few) and I want ramps everywhere and all stairs accompanied by elevators. I want people to stop saying the word “normal” because it offends me.
• Individualism – yes, we will make it the law so that anywhere you go or never go, you can get around as much as possible. And anyone who says something that offends you should be punished by the public.
• Collectivism – no, it does not make sense to add ramps and such that are a cost to the country (by taxes) to implement these things, also the extra pollution from adding this extra concrete and electric demand is not worth it. There are many people you will never meet or talk to, they shouldn’t have to change the way they talk for fear of being punished, especially when their words will likely have no malintent.

Both of these are not the right way to go about this. The first one I highlight how movements such as ableism can seem to be a lot of people making demands. The second digs into how sometimes considering the collective can be good, but flawed in that it severely hurts (economically) individuals who are a minority and need extra help. Somewhere in the middle is the sweet spot, somewhere reasonable.

The hardest part is how to figure out what is reasonable. It’s clearly not reasonable to pave all hiking trails in America (especially the mountain ones) just in case I want to go for a hike. But maybe a small few of the more popular trails could be smoothed out a bit so I can at least enjoy 1 mountain hike. If by ‘reasonable’ we consider the individual, then we might consider how to optimize their contribution to the collective in a way that gives a net positive by measures of what concerns the collective. This would be stuff like access to work, education, and the most common pass-times. Basically, if we consider the most common things the collective does throughout their lives, we’d want someone in a wheelchair to be able to do alongside.

If we consider what’s reasonable from the collective point of view, this would be the same. It’s whatever can be done to maximize the collective’s growth (economically, or whatever everyone is mainly striving for). I think that’s a good solution – maximizing how much we can get someone who is not normal (i.e. different than the average person and needs accommodations) to be given the right to accommodations/opportunities so they can contribute as much as the next person all while reaping similar enjoyments from society. This means that because a lot of people have a car, then we should make it so that people who need accommodations also can drive a car. But as for boats, because those are rare, they can be taken care of on a case-by-case basis.

When it comes to deservedness, someone in a wheelchair can say that they deserve, from the collective (the country), the opportunities/infrastructure in such a way that minimizes obstacles to maximize contribution. When it is said that one deserves reasonable accommodations, it doesn’t mean that one deserves to change the language everyone uses. It does mean that I ought to be able to get into my office building.

The critical issue/objection here is whether or not it’s possible to have a net positive contribution. Without thinking too hard, it’s possible to think there’s no way for a net positive given the breadth of accommodations along with their expense financially and ecologically, but then we can remember that something like a ramp can be thought of as a one-time cost, while the use of it can be by multiple. As for ecologically, we’re already well on our way to global destruction, so a little more doesn’t hurt (plus any concrete not used for a ramp doesn’t stay as sand, it’ll just be used for stairs somewhere else).

Two key data points are how many people need the same accommodation(s) and how much they are contributing to the whole. If only a very very small number of people need a ramp and none of them have a job, can it be justified to require ramps across the country?
If there are a lot of people who require ramps and they work significant enough jobs to contribute to the collective in many ways (taxes, community, technological developments, etc.) then does it make sense to install ramps everywhere?

When a conversation around social justice is started, for any group of people (usually minorities), it’s reasonable to say “we deserve to be treated equally in such and such ways.” But there is definitely a point at which it can go too far where that group is making demands outside of their deservedness, forgetting that it’s still very important to consider the collective alongside the individual.

Pretty much everyone who has been in a wheelchair for a while, especially when there is very little hope for becoming normal, has similar qualities. What I hypothesize is that these qualities are almost inevitable given the very similar situation of most people in wheelchairs and there are compromises that come with them.

The first criterion is to have been in a wheelchair long enough to have overcome the initial mental barrier to the dramatic change (assuming the person got injured in adult life), or if they’ve been in a wheelchair for a while, then the first criterion is for them to be an adult.

One common quality is “nice.” After having enough experience, anyone in a wheelchair will understand that life is very very difficult without some help. A simple example is when going to the store and needing to get something off the top shelf. If the person in a wheelchair is a total meanie to everyone around and then needs something on the top shelf, it’ll be very humbling/embarrassing to ask for help and probably not get the needed help. This goes for many things, but basically, anyone in a wheelchair HAS to be nice by default because they should know that needing help is inevitable.

This is a compromise. Not that being nice is bad but when someone MUST be nice a majority of the time, it isn’t always good.

Patience is a virtue, but at what cost is it attained? One of the greatest compromises I’ve faced is that nearly everything takes longer. Getting dressed, getting in the car, showering, doing the dishes, etc. After a while, I’ve gotten acclimated to this and can plan accordingly, but it means that the things I can do in a day are reduced, depending on what the day involves. A multi-stop driving tour where I get out each time – the extra in-out time adds up.

Another compromise is living. Whether in a house or apartment, the needs vary but are a lot more than any normal person who could walk up some stairs, squeeze through some tight areas, or even just turn around without taking up more space than a circle maybe 1-2ft diameter. Even for myself with minimum requirements, the apartment I live in is much more expensive than what I could otherwise get. It turns out to be surprisingly hard to find apartments with an elevator, or even as the bare minimum, a kitchen or bathroom that I can get around.

There are many other compromises that are made, some alleviated by having a good friend(s), others alleviated by a community of good people, but a lot are not going away and a lot of them are far from trivial. What’s the result of this? Mainly that many people in wheelchairs have similar experiences, which leads to similar life philosophies – like always being nice, believing that people are good given a chance (unsuspecting folks holding open a door), having patience, and accepting life as it is in the moment. But also some negatives such as dependency or isolation.

I guess I made a clear case – given enough people with a similar and major life situation, they will have similar qualities. But what about it? Nothing. It’s not good or bad. It’s just an observation that doesn’t change anything and you shouldn’t feel bad about these compromises that are made by people in wheelchairs. With true Stoic insight – it is what it is.