I have never enjoyed math. Its not something that fits well with my logic processes, and for this reason I was one of the few students in school who really enjoyed word problems. When lines of numbers were translated into hypothetical situations, I could visualize it. When I see something I can understand it. I also have a tendency to rationalize things. I can spend hours working and reworking things in my mind until they can fit into a reasonable logic.
Because of these two traits, I recently arrived on a strange comparison between what I study and my pain. I keep a pain log, where I track the patterns of my condition and how the acute and chronic pain flares.
This week has been particularly challenging. On top of the standard pain levels, I have had acute pain in my trapezius for the past three weeks, which will not
subside. Then on Monday my right arm felt a little strange, I went to work anyway. It wasn’t until I left that office that I realized by whole arm had
seized. I couldn’t (still cant) raise my arm above my head, fully extend my elbow, or rotate my wrist without shooting and debilitating pain. These are the
sorts of flares that keep me in bed or literally make me dizzy and dry heaving from the pain. It is unpleasant to say the least. The pain in my right side has
persisted, with slightly lessened intensity, through the week. It makes working and even functioning challenging.
So I turned to my logs, to try to rationalize this change. Hoping that I was somehow responsible and I would see a change in behavior that would explain my
increased pain. There was no point of origin. It seems there is no pattern, which for someone like me is immensely frustrating. My next thought is that I am essentially in an intractable conflict with my body, where my condition is the aggressor, but what are the parameters of the conflict? I supposed if my genetic condition were a war it would be indiscriminate non-state violence of subjugation.
I know this sounds insane, but it actually helped me think through what was going on in my body, so bear with me. This condition is genetic and appears either hereditarily or in a gene mutation. The people affected by EDS are an indiscriminate population, its not based on gender or race. Under the current
medical understanding, it is pretty randomized in the way it presents. Also this “violence” or pain in my body is not reactionary. There are certain aggressors, like if I went for a run I would be in a great deal of pain, but on the whole my pain is not dictated by behavior. EDS is committing indiscriminate violence against my body.
In international law, if two states are at war there is a certain body of laws that must be abided by.This is called International Humanitarian Law (IHL), like the rules of war. Modern states have signed a number of treaties (think Geneva Convention) saying what is acceptable in times of war. If they do not abide by them they are (hypothetically) held accountable by the UN and the international community. One of the problems with contemporary conflict is that more and more often countries are fighting wars against non-state actors like militias, rebels, or terrorist groups. These groups have no reason to abide by international treaties. The states must still play by the rules, but these groups get to rewrite the way the game is played.
EDS is like a non-state actor. I have all these rules, assigned by society and the medical community – expected methods of how a disease can and should be approached. EDS does not really care about our rules and is going to do its own thing. I am sticking to the “IHL” of treatment: massage, physical therapy, stretching, tens units, exercise, rest, and medication. The classic “lines of defense” are not built to fight against a condition that most medical professionals do not consider a serious threat or one that follows the normal rules of pain.
The last category is subjugation. Typically mass violence can be categorized in many different ways, but the classification of violence to subjugate and violence to eradicate are usually mentioned. Violence of eradication is when the perpetrator is trying to kill a population. In contrast, subjugation is when a perpetrator is trying to commit sufficient violence to incite fear in a population and make them submissive. EDS is not an issue of eradication. It is not fatal. It is not going to kill me, but it is trying to control me. It is trying to make me afraid to live at my fullest capacity and dictate my behavior.
My thought process only got weirder from here. If I was studying my condition and its effects on my life the same way I study a conflict, what would be policy recommendations be? My first idea was diplomatic negotiations, but as much as I personify my condition, I can’t really ask it to come to the table and talk to me.
The next option was strategic military intervention and peacekeeping forces, but in some ways that’s what I’ve been doing. The lifestyle changes are like peacekeeping forces and the pain meds are like military intervention, but they’ve done little to maintain a stable peace in my body. The only remaining intervention is my personal favorite, non-violent civilian resistance. So I was faced with
the task, how do I create non-violent resistance against my pain? If this was in fact indiscriminate non-state violence of subjugation, I would have to be creative in my approach.
I decided that I would refuse to subjugate. I would try to avoid doing things that I knew would further exacerbate my pain, but there is no way in hell I am going to lie down and let it take control. Monday night I gave it a go. My pain was at its worst and my vision literally blurred. All I wanted to do was lie in bed and give in, but instead I tossed my book in my purse and headed out. I took myself to dinner at Le Comptoir, a restaurant I’ve been meaning to try since I arrived in Paris. The metro ride over to the restaurant was brutal. Each lurch of the train felt like a personal assault. When I got to the restaurant I felt like I was going to faint and I was seriously questioning my decision making process. But then I had a fantastic dinner and really interesting conversation with the folks around me. For a few hours, it didn’t hurt so bad and I could focus on something else. My non-violent resistance was to try and create something positive when my pain was at its worst. I realized my pain is not going to back down, but then again neither am I.