Part one – Getting to Germany and The First Injection – or – Testing Your Patience with my Verbosity.

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.