Tag Archives: disability

13 Fibromyalgia Moments

naturalhabitat

In my natural habitat.

  1. I slept in until 10:30 this morning, but am ready to go to bed right now. It’s just after 9:00 PM. This feels like a failure, somehow.
  1. Wikipedia defines fibromyalgia as “a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndromebowel or bladder problemsnumbness and tingling, and sensitivity to noise, lights or temperature.” Fibromyalgia does not sound so bad, defined this way. Any person with the condition, however, will tell you that it is much worse than this definition makes it sound.
  1. Something a lot of people do not understand about chronic pain is that it is constant. I am always in some kind of pain. Some days, my pain level is a 1 or a 2 (those are great days); some days, it’s an 8 or a 9 (usually because of rain, or because I did too much, exercised too much, or overcommitted myself the day before). Most of the time, my pain level is between a 4 and a 6. The rock band Hole titled their 1997 compilation album My Body, the Hand Grenade. My body is a land mine that can detonate internally—touch it the wrong way, and it will explode with symptoms.
  1. Even the number scale doesn’t really cover the symptoms that I deal with on a daily basis: pain (it usually feels like I’m wearing an overcoat of bricks), fatigue that feels like I’ve taken at least 4 Benadryl pills, and very strange symptom trinkets like nausea and dizziness, the skin on my face getting extremely hot, and/or feeling like the soles of my feet have been lit on fire. There are more weird symptoms, but listing them could be an entire piece in itself.
  1. The pain itself can take certain forms other than the aforementioned overcoat of bricks: burning, biting, pin-and-needling, scratching, dull aching, shredding, or, my least favorite, pulling. Pulling pain feels as if my bones and muscles are being pulled toward the ground, like gravity decided to weigh on just me a whole fucking ton.

Most of the time, my muscles are as tight as closed fists; this gives new meaning to the phrase tight body.

  1. When the less-common shredding variety of pain occurs, all I can think is, This would be what pulled pork would feel like if it were able to feel.
  1. When I was first diagnosed with fibromyalgia, in 2007, I thought that the name of my new disorder sounded like the name of a gross fish that swims along the bottom of the ocean and eats dead things. That, or the name of a character from George R.R. Martin’s A Song of Ice and Fire series: Lady Fibromyalgia of House Musculoskeletal. Unfortunately for me, it was, and is, neither.
  1. A close relative asked me during a phone conversation, “When you say you don’t have the energy to get out of bed, what do you mean?” I didn’t know how to make the language of that statement any more plain.

I mean that I do not have the energy to get out of bed, I replied.

  1. There have been times when I have attempted to read—to distract myself from my symptoms—and the words look like they’re starting to march off the page. This is one of my indicators of level 8-plus pain or severe nausea.
  1. I have a lot of guilt about not being able to do certain things, especially if social activities with family or friends are involved. Are they thinking If she would just [______], she could make it to the party/art opening/camping weekend?

My partner is quick to reassure me that family and friends would much rather see me when I am feeling well, and that it’s important for me to take care of myself. Despite my frequent worry about this topic, his reminders help. But the expectations that “nice” women are up for anything, are cheery, social, ever helpful, able to go to parties and events, look pretty at all times, be charming and friendly and talkative and make other people comfortable by not showing that they’re upset, annoyed, in a funk, or (in my case) in pain at all–still haunt me.

  1. I cannot remember what it is like to not be in pain. Even being at a level 1 or a 2—usually thanks to medication—seems strange to me. Being in at a low level of pain always feels like I am in another body, like I’ve borrowed someone else’s body for a little bit.
  1. If I had to choose a superpower, I would want to be able to projectile vomit rotten sauerkraut onto people who say that fibromyalgia does not exist, that there is no “physical evidence” for it, that it’s a women’s disease, so we must be making shit up.

The central idea in this attitude, as with the skepticism surrounding chronic fatigue syndrome, chronic Lyme disease, and more—is that women who have any of these “mysterious” diseases must be exaggerating their symptoms for attention, embellishing descriptions of their daily pain to get drugs, or dumb enough to have been convinced by drug ads on TV or news articles or WebMD that they have these “made up” diseases. There’s a pervasive cultural idea that men’s pain should be taken seriously—if a man is in enough pain to visit a doctor, he must be in real pain. The other side of this coin is that women’s pain should not be taken seriously—a woman in pain who’s concerned enough to visit a doctor for treatment might be just hysterical or anxious.

  1. Every single thing that I do is affected by pain, and I have to live my life accordingly.

To people who do not have chronic pain, this sounds like I have given up. To me, it sounds like common sense.

 

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Beyond Human: The Heaven’s Gate Cult, Transhumanism, and Me

A selfie with one of the Heaven’s Gate (post-mass suicide) photos, as shown in John R. Hall’s excellent 2000 study on new religious movements, Apocalypse Observed.

[Originally published on Disability Intersections on  March 21, 2014.]

Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.

–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.

Continue reading

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Quick update: My work, elsewhere

Hi, readers! I know I’ve been neglecting ye olde blog (and hopefully I will start to do better on the whole “updating it regularly” thing soon!), but I wanted to draw your attention to a couple of things in which I have been involved lately:

Last week, I wrote a guest post for Tiger Beatdown on Lars von Trier’s 2009 film Antichrist, and how it relates to the pop cultural depiction (or lack thereof) of depression and pain, women and emotion, plus the unintended backlash that the expectation of “strong lady characters” has wrought. Go and join the discussion if you feel so inclined. Content warning for discussions of some graphic violence that the film depicts.

s.e. smith and I recently wrote an article (on disability culture on the internets and online feminism, naturally) for the latest print issue of Bitch Magazine, which is currently available for purchase or download. I also did the illustrations, which is kind of (read: EXTREMELY) exciting for me. We were interviewed at length by Kjerstin for the Bitch Radio podcast as well. Hooray!

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Blast From the Past: The Secret (and how much I loathe it)

[Introductory note: This was originally published on my old blog on March 10, 2007; because I am nothing if not a complete and total buzzkill, I think it’s worth re-archiving here, particularly since “new age” thought has a pretty strong foothold in Western–and particularly North American–culture. This sort of magical thinking still has a strong grip in many folks’ consciousness, even given the recent economic downturn; maybe I’m just naive, but I find the fact that some people can still be all ~*POSITIVE THINKING*~ and/or YOU GET BACK WHAT YOU PUT OUT even amidst widespread economic chaos and a brutal job market extremely surprising, and pretty sad.

Then again, realistic thinking has never been America’s strong suit, particularly amongst the privileged classes. The following post has been slightly edited for clarity. I have since written quite a bit on “positive thinking” as a means of social control, mostly at FWD: The Negative Side of Positive Thinking; Book Review: Bright-Sided; Just. For more information about precisely how harmful “positive thinking” can be when taken to the extreme, I highly recommend this blog post by Dr. David Gorski at Science-Based Medicine, which covers the Kim Tinkham case in detail (content warning for discussion of cancer).]

I just watched the latest and supposedly “greatest” in the self-help/marketing peoples’ insecurities back to them market, The Secret.

I sort of want that 90 minutes back. Now, before people start jumping on me and calling me negative, skeptical, bitchy, et cetera, let me assure you: I am, indeed, all three of those things. I tried to watch The Secret with an open mind. I really, truly did. But, I have to say, besides some of the stuff about visualization*–which I have thought of as a powerful tool for a while, and, at times, it has absolutely worked for me–I simply was unable to get on The Secret bandwagon.

I don’t know what it was that made me so hostile to the entire thing. Was it the overproduced “dramatic” re-enactments, some of which look very familiar to even a casual viewer of the History Channel? Was it “Dr.” Joe Vitale, Metaphysician,** who contends that ALL of the bad circumstances in your life come to you because of, well, you and your horrible, horrible negative thoughts? Was it Lisa Nichols, who was one of four women interviewed (out of 16-17 people) and one of two people of color interviewed? (She seemed to be the most sincere out of all of the “Teachers” interviewed, which endeared her to me quite a bit.) Was it the many shots of people from Other Lands, smiling and laughing, and getting fawned over by the “Teachers” due to their “natural” ability to Make Do With What They Have? Was it the completely oxymoronic focus on using The Secret to gain material things, money and houses (focused on after the many shots of our friends from other lands)? Was it the bizarre assumption that everyone watching the video wants the same damn things? Eeeek!

Then I reread this fantastic article, which outlines some of the problems with The Secret, and how Oprah, unfortunately, has basically adopted it as her credo and is trying to get her viewers to do the same. If it works for her, great. However, one thing that has bothered me about Oprah’s unquestioning acceptance of The Secret is this: It reinforces the great American trope of pulling oneself up by one’s bootstraps. AKA: If Oprah/some disadvantaged person has become successful, then you can, too! All you have to do is think positive thoughts!

There is, of course, a lot more to it than that. I’m all for thinking good thoughts, but it is the denial of reality and various systems of oppression that make this position worse. Racism, for example, is one thing that is consistently denied as to its very existence. I have news for you, folks: Racism still very much exists. I can certainly create a non-racist America in my own mind (and let me tell you, it is awesome), but to see it in front of me is going to take some major societal changes. And it’s the same with sexism. And homophobia. And ableism, and classism, and all of that other fun stuff. “Creating your own reality” only goes so far–eventually, you will run into a structure that is bigger than you, and oftentimes, these structures are oppressive and hurtful to many people. I’m sorry if that sounds “negative,” but it is true for a lot of us. Not many people can conveniently ignore these structures in order to “think positive.”

Bad things are going to happen. Bad feelings happen. That is part of life. One of the Noble Truths of Buddhism, after all, says that life is full of suffering. Of course it is, even though it is also full of Great Things. To deny this is to deny an actual, authentic life. And I have to say, I feel sorry for anyone who shies away from feeling the full spectrum of emotions because they think that “negative thoughts will attract bad things,” (one of the claims espoused in The Secret). Yes, negative thoughts suck. They make us feel bad. But trying to be aggressively “happy” is not only potentially dangerous, it’s Pollyanna-esque and annoying.

[*Visualization, however, is one tool that I really, really like, mostly because it forces me to use my imagination and is quite fun. It’s nothing new, however; various self-help gurus have been promoting this tool for years. Even if it doesn’t work, it’s still fun, and, unlike some of the professional bullies who harangue you for an hour and a half in The Secret, it (most likely) won’t make you feel bad about yourself.]

**I kid you not; this was listed as his actual professional title during the video. When I grow up, I wanna be a Metaphysician!

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Quick Signal Boost: BADD 2011

I haven’t been able to put together a post for Blogging Against Disablism Day (BADD) this year due to other commitments, but be sure to go check out the list of this year’s posts, compiled by Goldfish at Diary of a Goldfish. As with other years, I am sure that there will be many excellent and thought-provoking posts!

I’ve contributed to BADD in the past, so now may be as good a time as any to drop some links: a poem, a bingo card, the first bingo card (cross-posted at FWD; not for BADD, but perhaps necessary for context of card #2).

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Wearing fuchsia lipstick: Not the apex of self-acceptance, but it helps

[Image of Annaham, a young woman with dark blond hair (worn in a bun) and blue eyes, sitting on a couch and pursing her lips in an exaggerated manner. She wears a black t-shirt and fuchsia lipstick.]

So, sometimes I like to wear makeup. This is not exactly news, I know.

In this photo, I am wearing Urban Decay’s Trainwreck lipstick, which is BRIGHT FUCHSIA, and it has glitter in it. I should note that I am not wearing any other makeup here, hence the wonky left eyebrow and skin unevenness. After I first bought this lipstick, I was kind of afraid to wear it in public because it is SO BRIGHT on my lips. I feel like someone, at some point, may come up to me and say, “That lipstick is too bright for your lips! Wear something more neutral.” (This may or may not be followed by an invasive question about my cane, because people commenting on someone’s appearance tend to pull that kind of shit, at least in my experience.)

To which I say: This is the only bright lipstick shade that I own, and I usually have issues with my lips in that I think they are too big and/or “out there.” That feeling seems to take a backseat when I wear this lipstick. Sometimes I just want to say, “MY LIPS ARE BIG AND THEY ARE COVERED IN BRIGHT FUCHSIA LIPSTICK, DAMMIT. OH, AND I WALK WITH A CANE BECAUSE I HAVE A DISABILITY, SO YOU CAN TAKE YOUR JUDGMENT AND SHOVE IT.”

I am not sure what walking with a cane and wearing bright lipstick have to do with each other. Maybe they have nothing to do with each other. But I will apologize for neither, and, in some way, I may be further inching toward accepting myself just a little more.

[Originally posted on my Tumblr]

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Willpower isn’t enough

New-agers are always a-titter about individual willpower as the response to everything. Often, this does not work for those of us with health issues, no matter how hard we may try (as demonstrated in the cartoon above)! Click for large.

[Description: Line drawing of a woman, obviously in pain, with a thought bubble over her head that reads “Willpower. Willpower. WILLPOWER.” On her left, a very happy-looking giant pill leaps from a bottle of prescription pills while saying, “Just TAKE ME already, asshole!” to the woman.]

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