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Fibromyalgia: The (In)visible (Dis)ability
Transcript of Fibromyalgia: The (In)visible (Dis)ability
and a syndrome. "Any serious or chronic illness leads to a breakdown of the normal experience of self and of self in relation to others. Our sense of who we are is fundamentaly linked to the routine functionally of our bodies"
-Kristin Barker I am a collection of chronic symptoms, the side-effects
on a prescription insert: fatigue, headache, sleep disturbances,
nausea, constipation, diarrhea, irritable bladder, agitation and restlessness, increased nervousness, sweating, shaking, loss
of memory, dizziness, do not operate machinery, increased
depression, causes suicidal thoughts in a small number of people, just 1 in 500, tell that to the mother of the 1 in 500 at the funeral. But I am getting off track. Keep getting off track. Fibro Fog. Why would I want to do this to myself? "So other people can take care of you." "you just want attention." IN YOUR HEAD" "For pity, sympathy." Start at my feet, the very bottom of me. The visible bottom of me, because I am pretty sure there is something else, something more down there. Something below the physical, the ground, the earth, something you cannot put shoes on and walk over. Something holding me together. “There are no trigger points in the feet,” the rheumatologist says when I tell him the touch of ground hurts. Sentimental Rhetoric
"sentimentality diminishes the 'disabled’ and produces a sympathetic victim or helpless sufferer needing protection, invoking pity, and frequent contributions"
- Dr. Rosemarie Garland-Thomson but my hands "criteria for FMS includes widespread pain for at least three months and pain in at least eleven of eighteen trigger points"
-Devin Starlanyl Move down to my neck,
perfect pale skin not even a blemish or scar.
I can turn it to the left and then the right
and then back again. Full range of motion.
The neck is where the headaches come from.
I can almost feel the nerve endings moving up the base of my neck, the tension in the muscles stiffening, the process of the headache becoming before it becomes.
My mother always told me how sensitive I was,
too sensitive. I felt everything too deeply,
worried about things that did not exist. She taught me early on not to trust myself.
My body, like the voice of my mother,
carries the same message. Move to the muscles in my knees:
trigger points #7 and #8. When my knees touch ever so lightly together a pang climbs up my spine and into my brain where my neurotransmitters work overtime, firing off too many pain signals, thinking I burnt my hand on the stove again, got cut with something sharp, hit with something hard. My neurotransmitters are unreliable narrators. And despite what my yoga teacher tells me, I do not listen to my body anymore. "It's never going to go away, is it?" I text my friend late at night. The phone shakes in my hands. "No, honey," she says. "I don't think so. But fibromyalgia is a part of what makes you, you."I tell her I don't remember what it's like to live in a body without pain anymore. I tell her how I want to live in somebody else's body, if only for an hour, just to remember what it feels like. "In 1999, FMS sufferers became legally eligible for federal disability compensation, even though it remains difficult for sufferers to be awarded disability compensation on the basis of the FMS diagnosis."
-Kristin Barker I imagine my body being opened. The skin peeled back layer by layer. The tissues, the cells, the nerves-- exposed. The invisible me being made visible. And I want you to look inside. To come and find me. "Medicine has failed
to make fibromyalgia VISIBLE. A growing body of research points to potential organic abnormalities but no objective marker of FMS currently exists. It evades our modern labratory arsenal"
-Kristin Barker and despite all that I know, I still wonder if they are right. American Ugly Laws 1880-1911
"any person who is diseased, maimed, mutilated or in any way deformed, so as to be unsightly or disgusting object, or an improper person to be allowed in or on the streets"
- Dr. Susan M. Schweik "IT'S All HURT I had fallen of the radar years ago. No areas light up on screen, no Cat Scan can find me, no MRI can pin me down, no radioactive egg can digest me. Organically speaking, I do not exist. I looked away. I avoided the young man behind the counter, his one arm shorter than the other. Cut off --stubbed-- at the elbow: accident, infection, birth defect. Yes, maybe he was born this way. I choose instead the woman in the next aisle despite the longer line. Watch her two perfect arms and strong hands, all ten fingers bagging my groceries, separating the frozen food from the dry. I thought I looked away for his sake. So he wouldn’t catch me staring, get embarrassed, feel shame. But really, I looked away for my own protection, from fear, from the imperfections of his body,
of this world. In a recent email I sent to a friend:
Re: From Toronto:
"Sometimes I think I get fibro. I get the disease. I get it and I know how to play the game. And I buy into the fact that maybe it isn't as bad as I think and that perhaps its more socially constructed instead of biological. But then I go away or do more than I should and I know I am powerless over it. I am not making it up, it is not in my head, There is nothing I could or can do emotionally to not be in this pain. It's not my fault. Maybe disability is socially constructed but not the pain or its diagnostic criteria. Maybe I can be more of an activist if I am compelled and secure in the fact that fribro is real and not coincidental symptons that rheumatologists came up with to pacify people in pain or to make a name for themselves. I wish there were organic tests that could make it more real like MS or RA. There has been some proof through Pet scans but I don't know much about it. Sorry I am just going on and on. I need someone to listen." "Accomodation becomes synonymous with 'fitting in,' a definition that locates the responsibility for adaption within the 'abnormal body' rather than within the institutions and ideologies that construct it as such."
- Dr.Julie Jung "How to Be a Good Chronic Pain Patient" "Clinging to my husband as he gently lifts and carries me from the bed, his night musk radiates from his shirt comforting me through each sharp step. My legs feel heavy, almost like they are broken at the joint. The pain is dull until the pressure of a shuffle-step when it feels like a thousand sharp filleting knives carving the muscles around my bones. I feel each and every one of the bones in my feet and ankles. My hands are locked in a cupped position, knuckles bulging barely able to hang on to his shirt. Luckily he is strong and is able to carry my weight to the toilet."
- Rebecca Milner, on living with chronic pain “Sad. Heartbreaking. No, not exactly. Deeply sad. I felt helpless…my child has to go through this. Disappointed for you. I always believed you would get better. Sometimes you used the situation to your benefit, as a reason not to do something…different parts of the week you were more capable. I wanted to do more for you then sit by your bed and play cards. But you couldn’t concentrate on anything else. At least we played cards. Doctors were assholes, I mean jerks. Always giving you conflicting advice. Remember one of them called me a wall, it’s like talking to a wall, he said. It was horrible to watch you on the bathroom floor. Can’t believe a doctor would want you to do that to yourself. I must be responsible.”
-- My mother, on loving a daughter with chronic pain. "I fight the uge to be 'Mother' at every turn.
I don't know what to do; she's in so much pain. Stop. Hilary is strong. She can do this. Maybe school is too much for her. I should do something. All our nine-hour days at school--wooden desks, cold floors. When we go places--restaurants, movies, classes---it takes longer than usual. That's how it is. I accept that. I wonder how much others do. How much they can. They are hungry and tired themselves." - a friend "we are programmed to focus on pain when it occurs and we need to fix it as soon as possible. When we sprain an ankle, everything around us becomes meaningless. Chronic pain is no different- our natural reflex is to turn inward and find a solution to stop the pain. I became completley self-centered, not spoiled or self-indulgent, but literally self-centered. I found myself getting angry at the children for touching me, because it hurt. Somewhere in my subconscious my children were the cause of the pain and I had to stop the pain. And my rational mind couldn't make sense of this. I turned to self-pity and helplessness. It took many years to get out of that hopeless state. I finally realized the source of my anger and frustration and self-pity was the pain itself and I couldn't fix it. I accept the pain now, for the most part, and realize it can't be fixed, at least not yet."
-My husband, on having fibromyalgia “I don’t think it’s a good idea,” my gynecologist says when I ask him about having a baby. I ask him because I am thirty-five and not because I am worried about the pain. I don’t ask him if he thinks I can bear it. “If you think you’re in pain now…,” he says, "you’ll be miserable.” I want to laugh. I want to laugh in his face, but I am stunned and instead tears come to my eyes. I want to laugh in his face because he thinks I can’t handle nine months. Because he thinks I will let the pain stop me. There is something about the way fibromyalgia keeps following me. Keeps asking for my attention. Like a little child: Remember me, remember me. Asking me to keep moving even when the thought of movement seems impossible. One foot in front of the other, one foot in front of the other. Can’t stop now, not yet. In this way, fibromyalgia has made me brave, fierce, determined. It challenges me by never backing away, never disappearing. Remember me, remember me… Sometimes…my body is still beautiful. It feels beautiful. And I am grateful for what it can do, in awe even. I can turn my body into a tree, a dancer, a happy baby, a cat, a cow, an upward and then a downward dog, an eagle, a resting child, a diving swan, a cobra, a sphinx, a butterfly flapping its wings, a warrior. In regards to the video "Fibromyalgia Help: Understanding Your Pain Can Help Treat It" by Pfizer Dr. Russell Potency, a Pain Specialist at Beth Israel, describes the disease process of fibromyalgia on health.com.