On What has been Going on With My Health

People who know me well know that there is something off with my physical state. The closest of my friends have done things completely outside the realm of normal friend behavior in the name of my health. They’ve hung out with me when I was bed-ridden, they’ve brought me food, picked up my scripts, taken me home half-way through nights out and bought my epic and terrible lying about being fine. But for the most part I’ve been fine in the sense that I’ve been able to perform. I’m smart and resilient, and stubborn, just like my favorite historical figure, John Paul Marat who fed the French Revolution from his bathtub. They are powerful in combination and I have powered through.

For as long as I can remember I have been in pain, all throughout my body. In fact, I started getting treated for migraines at the age of 4. This has shaped me in a number of ways, one of which is that it kept me confined to the house and books when I was a kid, and the other is that I epically avoid physical activity through a series of profoundly unfunny jokes about how said activities are only for crazy people or survival situations. My mom used to make fun of me when I cried when I was a kid, so I rarely cry and I rarely tell people what is going on. In the past couple of years it has become unavoidable however.

I was admitted to Stanford despite my disabilities and was well accommodated, they even gave me my own dorm for three of my four years there (apologies to my freshman roommate). It really wasn’t a problem when I was an undergraduate because when you are sitting around thinking and writing you can do that on a time-frame that works for you. Also, other than the few ridiculously silly times I attempted to “start running”, you can avoid physical labor entirely. If you are one of the leaders of the working class community you can even turn it into a joke about how you don’t run unless there are police or wild animals which will weed out anyone you don’t want to spend time with. Even when I was in foreign countries, I just built a schedule that allowed me to pull long days when I could and sleep the rest of the time. I think most people just thought I was a mildly annoying recluse who liked to sleep until noon. Health conditions will come to define your personality. I did exceptionally academically well especially for someone from my kind of high school.

At any rate, I was so used to making it work that I didn’t realize the connection between my improved health at Stanford and during the second half of high school and the fact that I was both keeping irregular hours and avoiding physical activities of any kind. Also, everyone kept telling me I could do anything if I believed in it hard enough and it is impossible to spend four years living in Disneyland without drinking some of the kool-aid, if for no other reason than to keep yourself from plotting the death of everyone you encounter.

Stanford is an insane environment. It is hard for me to explain to people who didn’t go there. I am one of the most laid back graduates I know. I have perfectly healthy friends who have made themselves almost as sick as I am and I have a serious medical condition. If you want to know why we all have to work 60 hours a week it is because Stanford kids are in charge. Almost every friend I have has had a psychological or physical breakdown. We never talk about it, and it is ruining everything for everyone.

I worked for a year as a para. I pretended I was ok. I threw up at work, more than once. I applied to STEP and got in. I spent most of that year terrifyingly pushing my body to the brink just to prove that I was capable, despite the fact that I didn’t have anything to prove to anyone anymore. I was pulled into meetings. They told me I must be faking my pain since I seemed to be doing academically well. They refused me my accommodations. I got pulled into the office of the dean of the school of ed who asked me why I wasn’t just getting my PhD. I spent most of that year trying not to get kicked out. One day I threw up in between each of the four classes I taught and then passed out for an hour and was 15 minutes late to class. Everyone thought I was being a rebel or something because I still showed up and owned the material, but I was mostly just very sick. I can own any material intellectually.

Still no one told me no. My doctor’s parting words were “I think you will be fine in a more scheduled and controlled environment.” So I got a job at a start-up charter in my hometown with no job description. It didn’t take long for my condition to deteriorate and eventually I was injured by a kid. I spent the rest of the year in my room trying to pretend I wasn’t miserable. Still, no one told me no. In fact, most people (with the exception of some of my close friends), just pushed me to get back to work faster. I don’t respond well to that kind of pressure. Instead of recovering I punished myself.

I got a job. At this point I knew there was probability that I had Ehlers Danlos Syndrome because I knew my little sister had it but it was going to be 6 months because I saw genetics and I was recovering. Also I didn’t fully understand what that meant. So I started off my first year of teaching with a bad knee injury, migraines and a still badly injured shoulder. I’ll get it under control, I deluded myself into believing. Everyone was happy with me again. Yay, I was performing like everyone wants me to! Everyone can live vicariously through my success and finally I will be loved. This is obviously a function of my childhood and probably a sign that I need therapy, but it is the reality, and honestly I don’t think it is that far off from the reality of most kids at Stanford.

Things got worse. And worse. And worse. Right now I have tendonitis in both hands, a badly injured neck, a knee that is out of commission, massive headaches and an injured ankle and hip. I still go to work every day. I am still trying to perform. Last month I went to genetics and they confirmed my fear that I had Ehlers Danlos Syndrome Type 3, which is a rare genetic disorder that affects all of my connective tissue. Basically I strain and damage everything all day long because of the hypermobility of my joints and the laxity of my connective tissue. I also found out that I have POTs, which explains the vomiting and passing out. I’ve been throwing up at work. I struggle right now to circulate. Just making it back and forth is difficult. I am still performing. My work is still good. I am doing permanent damage. But it looks like things are fine.

This is my life. I’ve crawled out of the 9th layer of hell and every layer in between and on my low days, I start wondering when that stops. I still beat myself up for that selfish thought. I am supposed to teach for 3 years, at least. That is my commitment. My geneticist said he didn’t understand how I was working at all. At this point I have a choice. It isn’t a choice that other people are going to like, but for the first time in my life I actually have a choice. I’m a hundred percent sure I don’t owe anyone anything. And yet, I’ve spent the last month torturing and tormenting myself, and I’ve allowed others to add their own two cents about it. Quarter of a century I’ve been on this earth and I finally get the choice and I go “no, its cool, just keep me chained up and whipped.” Soon I am not sure I will have a choice because every day I am running the risk that my body will make it for me. I am not really sure what the right answer is right now, but I also know that I don’t have to do this anymore to myself. That is probably a breakthrough.


4 thoughts on “On What has been Going on With My Health

  1. anyway, the real reason i ended up on your blog. i’m still trying to figure it all out.

    have you ever tried high dose Vitamin C therapy? has it helped your condition? how about rutin? do you have unusual sleep patterns like free-running sleep? do you wear compression stockings? do they help? do you have, for lack of a better word, “textured skin” on the back of your arms and legs? do you ever have to pound on your chest/collarbone to get your lungs/heart to sit right? what do you eat?

    • These are personal medical questions that I am not comfortable answering in this format, but the short answer is that I’ve tried what I can try and what my doctors think I should be trying.

  2. my friend Vytas introduced me to the concept of biotensegrity, collagen deposition, and how classical biomechanics is wrong:

    the radical conclusion of all this is that holistic strength training like kettlebells can reduce joint pain, particularly in people who lack collagen

  3. oh my god I just remembered the time I foolishly ate like 100 rose hips from a field behind my house. both my dog and I had terrible diarrhea but hours later I felt AMAZING and ran in circles around the block for no reason

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