This story is old enough that I finally feel comfortable enough sharing it.
Sometimes it feels like I am cursed. I have a disease known as Ehlers Danlos III, which affects connective tissue, making it weaker. It isn’t all downsides, as my extremely elastic nature has likely saved me from broken bones on more than one occasion, from crashing my bike several times, going over 30 miles an hour to being hit by a bus etc. Usually, something like that happens, a few things will be thrown out of joint. I pop them back into place and walk (well, limp) home. So why wouldn’t everyone have this quasi superpower? Well, the flip side of so much flexibility is that this condition is, to put it mildly, extremely painful with many dislocations and subluxations every day. Normal things like standing can cause me so much pain that I can become drenched in sweat. When I stand, I picture my knees as two ropes slowly tearing strand by strand under the load.
I tried everything to deal with it, and everything to hide it. I have obviously become more open with it over time, especially after I needed to start walking with a cane (which I no longer need! But that is a subject for another post concerning scientism) and outgrew some of my youthful pride. I started using knee braces at one point, which failed so catastrophically in class one day that they forced my knee out of socket while trying to explain international trade, which didn’t go particularly well for my composure.
So I stopped using them, only to find that the problem had gotten much worse. I remember to this day, I was feigning my way through a conversation while walking to the dining hall in so much pain I thought I might faint with almost every step- separating my lower leg from my upper leg only for me to strategically put my foot down to force it back so I wouldn’t topple over. I remember this because lots of people with the condition end up on heavy doses of opioids, on disability, in wheelchairs. At that moment, I vowed to myself that wasn’t going to be me. I vowed I would embrace any pain that would make me better, and I did. In particular, I found biking to be a great way to both strengthen my knees and improve my mood by randomly exploring Beijing and the areas around it. I put a lot of love and care into that bike. It had an internal gear hub so you can change gears even when stopped, important for me because trying to start at a high gear really damages my knees. Walking was still not easy. I certainly couldn’t run, and taking the subway was far too painful. I came to see my bike kind of like a wheelchair.
Things were getting better, and after watching Jiro Dreams of Sushi, I decided to treat myself to a tour of Japan, including even a reservation at the place itself.
Then I started going blind. I had very good vision, but suddenly everything became blurry beyond measure where I could barely make out text or recognize faces. At the same time, I was always hungry, always thirsty, and yet I lost thirty pounds in a month, my hair was falling out. I tried to stay in denial for as long as possible. I just started figuring out how to solve one problem certainly, I didn’t need to develop a new one. But I did, my immune system at 26 had decided to declare war on my pancreas, and by god, it won. Googling type 1 diabetes, the first paper I came across discussed the lifespan decrease, which was… significant. I had to get used to giving myself constant injections, to constantly pricking my finger, to almost losing consciousness when I made an overestimate. My girlfriend at the time broke up with me for strictly eugenic reasons. I canceled my trip. I didn’t want to be too adventurous when I was just learning to use my body, whose transmission I had suddenly found changed from an automatic to a manual. Historically I have been very prone to depression, and it certainly didn’t help matters. I started to feel like Sisyphus when it looks like the bolder is about to reach its point of stability, it instead falls.
At some point, I forced myself out of it, deciding to instead do a bike sushi tour of Beijing. That winter break I rode for many hundreds of miles and befriended the head sushi chef at the place that turned out to be my favorite of the ten or so I tried.
There I did it, that bolder is just about…
And then, on one fateful trip to the grocery store, my bike was stolen, and it rolled right back down.
I had put so much work into it, even changed out the ball bearings in the wheels. After a few days, when I realized the chance of its recovery was about zero, I went to the store where I bought it. They no longer sold internal gear hub bikes, though… No one did, I checked, and I checked, and I checked. After about another month of wallowing in misery, both of my conditions were deteriorating. Eventually, I broke down and bought a cheap $40 bike to take me to and from work, but it couldn’t exactly take me around the city at any reasonable speed. I tried normal bikes, but every unexpected stop or slowdown tore up my knees, not exactly a great thing in a city of 22 million.
At the time, my teaching assistant, a caring girl, called all over Beijing looking for a place that sold bikes with internal gear hubs. She finally found one! I had purchased the hub assembly earlier from the internet, so all I needed was someone who could work with them.
What preceded was what I vividly recall as one of the worst days of my life.
I took some time off to leave work early that Friday. Their website said it is located in Sanlitun, just about Beijing’s busiest place, especially on a Friday. I get there and… nothing, no store. I called them in my less than perfect Chinese and found out that they moved 12 km south the previous week and didn’t update any of their information yet.
Getting a taxi those days could be really hard as the price of taxis was set too low. So I stood there holding my box with the hub in it, trying my best to get a taxi for over thirty minutes. All this time a motorized rickshaw driver was hassling me, I kept telling him it was too far, he kept insisting otherwise. Exhausted from the pain, I called them and had them give him the directions. He says he knows where it is and quotes me about 15 dollars. Da Peng was his name, chain-smoking Da Peng making off color comments about women, well I wasn’t paying him for the company.
He changed the price to 25 shortly after we started going. Rickshaw drivers are not prized for their honesty, so I half expected it and simply acquiesced.
He had no idea where it was. Checking my app I saw he wasn’t even going in the right direction, pointing to the actual location. He, in shock, told me, that is too far! Sigh. I negotiated with him to at least take me to a nearby subway station… which he couldn’t manage either. In frustration, I just told him to stop, having made no appreciable advance towards my destination. He wanted to add my WeChat (Chinese social media platform), which I grudgingly did, he then pressured me for all the money, even though he didn’t really make any of the trip, and so once again, I grudgingly acquiesced, I am not one to fight. A general policy of mine is not to fight over surplus. If someone exploits me, I find it cheaper to just let them and stop dealing with them in the future. Though I admit this particular instance still kinda bugs me, I never did accept his repeated friend requests. I think some people must be truly atrocious at reading a situation. I really do.
Eventually, hours after my original departure, I am finally in a taxi heading to the location. It would be worth it once I had a new bike. But as fate would have it, they had no idea how to work with the internal gear hub I brought, and only would work with a $5000 model, attached with a $5000 bike for… $10000. Now I really wanted a new bike, with an internal gear hub, but my old bike was $130, and it got stolen… After about an hour of discussion, I realized there was no way to convince myself to spend that much. I thanked them, picked up my box, and found a taxi to take me to my favorite bar (now closed), which was on the way home, a bar I had discovered on a random bike ride during that winter break. I had a drink and talked with the bartender, who was at that point a good friend of mine. But soon, I realized that I had forgotten my insulin and blood sugar tester at home. So I left after one drink, outside the rain was pouring. Trying to get a taxi in Beijing when it was raining was like chasing after wild rabbits. Just because you see them doesn’t mean you can catch them.
I was soaked, I had been cheated, I had spent so much money and got nowhere, it was hopeless, and all the standing put me in excruciating pain. There I stood in the middle of a thunderstorm without an umbrella holding onto my box. I reflected on how unfair life was waiting for a taxi that would never come. After 30 minutes, I realized it was late, no taxi would come, and I should make it to the subway before closing. Maybe on this accursed day, I will at least get a seat.
I walk into the station. It is practically empty. I spot an ice cream machine, one of those automated deals where you can watch it prepare a cone for you. I hadn’t tasted ice cream since diagnosis. I missed ice cream. They had rum raisin, I hadn’t had that flavor in years. I shouldn’t. I don’t have my insulin. For all I know, the stress and pain had already made me a treat for sweet-toothed vampires, but you know what? Screw it, just screw everything. I bought the ice cream and walked to the platform. There wallowing in my misery, I saw a couple. The man was obviously blind, he was holding a trash bag, the woman was digging through the trash for recyclables at 10:30 at night.
My self-pity immediately changed from feeling like a righteous response against an unjust world to overly indulgent petulance. I looked at the still unopened ice cream in my hand and thought: when was the last time they got to taste ice cream? I walked over and awkwardly gave it to them, she took a bite and visually sank into the flavor, then gave her husband a bite and I watched as his hardened continence transformed into a mask of youthful joy that only such simple pleasures as rum raisin can provide. I thought to myself, how much happier was it for me to give them the ice cream than I would have been after angrily consuming it for a minute and then subsequently basting in blood sugar for the hour ride home. Then I thought some more, I opened up my wallet to see what was left, about 300 yuan (45 dollars), I hand it to them, at first the lady gives a meek protest but then gladly accepts the money. The last train had arrived, and hey, I got a seat. I sat and thought about things. I had gone from being at my most miserable to a state that was almost serene. Was there any use of that money that would have made me, in the very selfish and narrow meaning of that word, happier or better off? No.
The next day I decided to be more positive and once again thought about how I can be less miserable. Though my cheap bike couldn’t go fast, I could try to explore the local area some more: I always went right or left at the subway line, but never straight, that is something to try, going straight. So I went straight, and I passed by this little hole in the wall(literally) bike shop. Just for fun, I thought I would check it out. Turns out, the guy who ran it was deeply passionate about bikes, building custom bikes, and, yes, as unbelievable as it sounds, internal gear hubs. I commissioned two bikes from him, and they are still the bikes I use today. To think what I needed had always been a scarce two miles away. So there, a happy ending. A weirdly almost scripted sounding happy ending. Well, if we leave it exactly there anyway, but it is a lesson and a story that forms one of the core stories I tell myself to keep me moving forward, not that I don’t stumble still, it is natural to stumble, but I always manage to pick myself up(so far).
Realize that we all suffer, realize we suffer unequally, realize life is unfair, but realize that there are those whose lives you would be horrified to switch with, that go about life, contently as they can, making the most of what they can. Don’t wallow in your own misery, even if it seems deserved, it doesn’t even help you. Sometimes the best way to help yourself is to move your focus away from yourself, to others, to the world around you, to see what you can do to help. When bad things happen to me, and I notice I have been focusing too much on my own narrow interests, I try to remember the story, snap myself out and open up rather than close down. I have found helping others to be the only sustainable way to improve my mood and outlook.
I still remember the line I had from my elementary school production of Shakespeare, which seems apt (I still remember because I hammed it up so hard while delivering the lines)
Thou seest we are not all alone unhappy:
For in this wide and global theatre
Surely there is a tale more woeful than thee
(While double checking I found that this is actually a bastardization of the original quote, but I like the bastardization better so tough)