Here is the second installment of my theoretical/graphic memoir on disability, visibility, and gender! Previously: Part 1
Image descriptions can be found below the .jpgs; click the images for larger versions. Should you need more background on the “Supercrip” trope, a piece that I wrote for Bitch on the topic (all the way back in 2009) is cited on page 7.
Note: The following graphic work was part of my Master’s thesis. Rather than letting it sit and collect dust–and, just as crucially, now that I have a bit of distance from it–I have decided to share it. It will run on DI in several parts; since the chapters are quite long, I’ll be dividing it up for maximum readability. Image descriptions can be found below the .jpgs; click the images for larger versions.
Six Things I’ve Learned From Dealing With Chronic Pain
As I have written about in many locations around the web (including this site), I have chronic pain and fatigue caused by a condition called fibromyalgia. I started experiencing symptoms at 20, was diagnosed at 21, and in the eight years since my diagnosis have learned some things that may or may not prove useful to both other people with chronic pain and/or health conditions, and “healthy” people as well. The following is less about what having this condition is like on a daily basis (please see my xoJane article linked above for more on those aspects), and more about (insert triumphant violin swells here) WHAT I’VE LEARNED from having a debilitating illness that I will have for the rest of my life:
Sometimes a “positive attitude” is not the best course–try to aim for a realistic attitude instead. I know that maintaining a “positive attitude” is all the rage these days, but for some people it is simply not a great choice. There is no faster way to make yourself feel bad about having “negative” thoughts/energy/whatever than to try to actively banish these thoughts by trying to “think positively” instead of, y’know, dealing with those negative feelings. Bad feelings are a part of life, and they need to be dealt with so you don’t end up making yourself feel worse by trying to wish them away. This is why I try to cultivate a realistic attitude–I have both good days and bad days when it comes to pain and fatigue, and I can acknowledge and work with that instead of stuffing any negative feelings down under the guise of being POSITIVE all of the time.
Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.
I am grinding my teeth.
I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.
I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.
I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.
I am a multiply disabled gay dude with lefty-queer feminist politics living in San Francisco. Last year, I made the decision to put my health (my mental health in particular) first. That meant ending a long relationship that had come to an extremely unhealthy place. It was the hardest decision I had made thus far. Before I began my road to recovery, I embraced my single life with vigor: I partied, I was ecstatic, I was charismatic, I dated several people at one time, I didn’t hold my liquor, I was high as a kite, I had uneventful encounters with men, led men on, I smoked cigarettes like I was born with one in my hand–and I knew, fun as all of this was, that the gig wasn’t going to last much longer.
While I was highly aware of what I was doing during this period and have no regrets whatsoever, I wasn’t putting my health first. I needed to come to a stable place in my life after all the noise and drama of the previous four years since my diagnosis. In order to do so, I made the tough decision to pull out of the bar scene for a while. Being single and gay in the city dovetails with being in a bar or club. Fun as the scene is, my path to recovery butted heads with meeting potential paramours in loud, sweaty bars. I chose to be alone and invested time in friendships and my work. I was never a heavy drinker, but drinking and staying out until 2 AM was no longer an option for me. Doing so would not give me the steady sleep pattern that I now know I need in order to control my mental stability. But that was how I met men in order to go out with them–perhaps that is how many of us meet potential paramours. It isn’t an option for me anymore, however, and I am more than okay with that. Tempting as it can be, I am no longer up for a lost weekend. It was hard to pull back from all that fabulous wild abandon, but once I found my way to health, good things happened. I am now published, which is something I thought would not happen for a long time.
–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)
I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds, on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.
[Note: All names and identifying characteristics have been changed.]
The exact moment that I knew I was finished with academia–and, more specifically, Women’s and Gender Studies, which I had once adored and wanted to pursue a PhD in–was in 2010, during a graduate Women’s Studies seminar at a rather middling-tier state university where I was enrolled as an M.A. student. I distinctly remember shoving my sunglasses on my cried-out, red eyes before going to class, sitting down, and then hunching over to make myself appear smaller. It was a month before the end of the semester. Right before class, the instructor–also the head of the department at that time–had called me in for a meeting because she was “concerned” about my attendance. The first week of the term, I had met with her to discuss my accessibility needs, and give her advance notice that my ongoing chronic pain and fatigue caused by fibromyalgia would sometimes prevent me from making it to class.
She seemed okay with this in the abstract, and mentioned that she’d worked with several students with special accommodation needs. Until this health issue actually (SHOCK/HORROR) got in the way of my making it to her class three times in a 16-week semester, I figured we were okay. There was even an accessibility statement on her syllabus!