Tag Archives: fibromyalgia

Guest Post: Embracing Disability, Struggling for Emancipation, Part two: Dissecting Content and Medium

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

This is the second post of a short series; part one, “Rocky Beginnings,” can be read here.

There is a part of growing up that was never really addressed in my family: leaving home and starting your own family.  When I met my spouse in college, I realized that I had no idea how to become a healthy, emancipated adult; I simply had no examples to work from.  When you throw in the fact that my health began to decline shortly after I began to make earnest attempts at emancipation – and stopped backing down every time I received substantial pushback – the process has frankly been excruciating.

I keep many aspects of my personality secret from my family – as a genderqueer atheist Catholic*, I have decided it is just not worth the effort.  I also imagine that the “I thought it was obvious!” defense would be plausible if I were outed, which assuages my guilt a bit.  Unfortunately, it becomes difficult to hide the extent to which your illness is affecting your life when you are sleeping 15-20 hours per day, and have dropped out of grad school.  Hence, the fact that I have not had a conversation that neither devolved into a frustrating, tear-filled shouting match, nor focused largely on the weather.

As discussed in part one of this series, I have addressed the content of my family’s objections to my “life choices” – because getting sick is obviously a life choice – extensively.  Numerous emails, phone conversations and weekends in my hometown have been devoted to explaining exactly what was wrong with each hurtful, disrespectful thing my family says.  These conversations usually end with my mother suggesting that if I can’t hold down a job, I should just move back home.  Yes, screaming at me, denying my illness, and accusing my spouse of abuse are all meant to make me want to be around that behavior 24/7.

Pursuing a suggestion from my therapist, I have tried redirecting the conversations to the core issues at play – emancipation, healthy boundaries, and the fact that I am an adult.  Given that similar discussions took place before this most recent series of health developments, many in regards to the fact that I went to college 200 miles away from home, got married, then moved to a city 500 miles from home, and that my mother has also dealt with issues concerning emancipation and healthy boundaries, I felt that these issues were worth discussing. I recently asked my mother whether she thought she had a right to know every detail about my life.  Her response terrified me in a way few things have: “Well, you’re the one having trouble.”  The thought that if I ever need help, I may have to trade my basic privacy scared me so much that my vision blacked out.  I had never felt the loss of my family’s support as strongly as I did then.

When my attempt to create healthy boundaries is perceived as an abusive spouse separating me from my family, what actions can lead to a happy ending for all involved?  I am afraid that, by insisting on what I perceive to be a normal, adult life, I am causing substantial pain to my family, who interpret these actions to be the results of abuse.  They are afraid of losing me forever to a terrible situation, and cling more tightly.  I am afraid of losing myself forever by staying.  No one is happy here.  No one is benefiting from this pain.

I don’t know what to do if this continues; I am worried about the effect that being in hopeless situations has on my suicidal and self-harm ideation, especially given that this very situation has triggered both.  I have no control over anyone’s actions but my own, but the idea of distancing myself from my very tight-knit family is disheartening.  Also unfortunate is the fact that if I don’t talk to my grandmother, Uncles A, B and C won’t talk to me, and Uncles D and E will spend any conversation time pressuring me to reinstate contact.  I would also lose absolutely all contact with my brother, niece and nephew.  Sadly, I know that if I chose to play family politics here, I would “win”.  It just isn’t worth the slimy feeling afterwards.

I am working to build a support network outside of my mother’s family.  I have a few very close friends from college and my neighborhood who have helped me tremendously.  I was only at my graduate school for a few months, and was so consistently physically excluded from events that I gave up on forming connections there.  The group of people that has consistently come through on helping me with whatever I needed is spread all over the world, and many of us have never met face-to-face; my friends from various online communities – activist groups, fandoms, friends-of-friends – have saved my life.  Days when I cannot get on the computer (which lives on my bed, along with all of my medications and enough food to last a few days) are rare, and the communities there are amazing – and not always in the inspiring way.  It is in this very community that I came to accept my right to feel angry and defeated at times.  I don’t have to be a “super-cripple,” and that realization is what keeps me going through the bad days.  I am hoping that this ability and time will lead to a healthy resolution with my family.  If not, I already belong to a strong community here.

*Trust me, it works.  You just have to stretch your definition of “cafeteria Catholicism” a tiny bit further…

Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty.  When I complained, the doctor would usually laugh and attribute my complaints to growing pains.  I was told many times by family members and medical professionals to grow up and to stop complaining.  So, I did.  For a decade.

Fast forward to now, and I am once again vocal about my experiences.  This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial.  I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms.   I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking.  He has adapted admirably to “physical contact rules” that change daily.  He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood.  He helps me with whatever tasks I cannot accomplish on a given day.  In short, he is a wonderful spouse helping me through a very rough adjustment period.  The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me.  This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences.  So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful.  Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc.  Things got bad enough that I attempted suicide in September.  It felt like I was not only losing my physical and mental functions, but my family as well.  Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week.  The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault.  My sister’s 6-year-old son happened to be present, so I got to talk to him, as well.  My nephew noted that it had been a long time since we had talked.  I replied that I was sick and needed to turn my phone off for a while.  My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better.  At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out?  Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus?  Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am.  And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]

5 Ridiculous Big Pharma ads

I have an ongoing peeve that relates to medication and social attitudes surrounding it: often, for some people on various sides of the political spectrum, trashing Big Pharma translates into trashing people who use prescription medications at all, for a variety of health conditions — especially for chronic conditions, both of the mental health and physical varieties. As a woman with multiple disabilities — a few of which require me to be on medications manufactured by Big Pharma (OOOOOH, SCARY) — I am not, how shall I put it, too excited about this. It’s really nice that stereotypical Extremely Naive Hippie Liberals and Rugged, Anti-Government Bootstrapping Conservatives can, theoretically, bond over how much they mutually hate those of us who take medications for legitimate medical reasons — but even those of us who, normally, would like and/or encourage all of this talk about “building alliances across the [political] aisle” have limits.

In short, there are a lot of things for which you can take Big Pharma to task without also treating the people who depend on these medications like total shit. One of these things is advertising and direct-to-consumer marketing, at which Big Pharma seems to be really quite good! And by “good,” I mean totally ridiculous. Let’s take a look at five different ad campaigns that should never have left a pitch meeting, much less been made with gargantuan budgets, professional actors, and voice-overs that calmly inform the viewer/listener of possible side effects.

5. Cialis: Yes, the one with the make-out music in the background and the couple sitting side-by-side in the bathtubs out in a meadow or something. Why is it so difficult for these folks to find a tub big enough to fit them both?

4. Uloric: Granted, this one may not be as ridiculous as some of the others on this list, but the visual of a dude carrying around a giant beaker of green liquid (which looks suspiciously like it should be in some sort of fancy alcoholic drink that costs upwards of $7) is pretty bizarre, as is the voice-over that helpfully informs viewers that side-effects may include flare-ups of the very condition that Uloric is used to treat. This might be the entire point of the ad, though; since Uloric is a medication intended to help with Gout symptoms, wouldn’t it be more accurate to have the guy wear shoes to which giant beakers are attached? Perhaps we could see a live-action depiction of the 16th-century drawing included in the Wikipedia article on Gout, instead of a guy with a big beaker of neon-green energy drink? That would be awesome, and might get the Gout-is-horribly-painful-and-this-medication-could-help message across in a way that actually makes sense.

3. Lyrica: Every time I see this one, I want to yell at the TV, particularly when the one featuring the classy middle-aged lady who bakes bread has somehow made its hellish way into my precious rerun of Dirty Jobs or another show that I don’t like to admit to enjoying. The actress in this ad pronounces “Fibromyalgia” like it’s a seasonal root vegetable or something (like “FYE-bro-MY-al-GEE-AH”) and all I can do is give the television my most hateful death glare. Oh, and even better is when she says that “My doctor diagnosed it as FYE-bro-MY-al-GEE-AH muscle pain,” and I want to scream, “Lady, IF YOU KNEW what fibro was actually like, you would not be saying that. You would probably be in too much pain on some days to do very much.” Or baking loaves of crusty bread en masse, for that matter. As someone who’s dealt with fibro for the past few years of my life, I only wish I had enough energy to bake many loaves of bread, like the woman in this commercial. Sweet, delicious carbs might help my pain, or at least give me something to focus on other than constant pain and fatigue.

2. Cymbalta: My personal favorite moment is when a kid runs up to hug the woman (presumably a relative?) and the camera focuses on her face, and she just looks so sad that the explanation just has to be terrible acting (or depression, according to the good folks at Eli Lilly). Depression’s symptoms are much, much more complex than walking around looking like the emoticon for sadface [🙁], but you wouldn’t know it by watching this commercial. I think someone should make a parody of ads like this, except that some other person approaches the woman, tells her to “Snap out of it,” and then the woman gives that person the finger–or, more accurately, gives them the 😐 face, because that is what certain aspects of depression make you feel like doing. You’re not only sad all of the time, but often you feel too hopeless to respond to people’s asshattery when they feel the need to comment on your depression and/or tell you that you Just Need To Buck Up.

1. Viagra (“Viva Viagra” spot): Truly the stuff of nightmares. The first time I saw this ad, I was awake at 3 or 4 AM due to pain (go figure, right?) and thought I was hallucinating when the opening chords of “Viva Las Vegas” started up in the opening seconds of this ad. I was, at first, confused as to what that particular song had to do with a medication used to treat erectile dysfunction. And then four middle-aged dudes–one playing a guitar–appeared on the screen and started to sing “VIVA VIAGRA!” to the tune of a song that most people associate with Elvis Presley, or any buddy comedy that has some sort of drunken Vegas montage. If you’re sure that this one won’t give you nightmares, I urge you to find it on YouTube, because it must be seen to be believed. Unfortunately, it’s been replaced in recent months with 30 seconds of yet another middle-aged white dude driving a car around in the dark. The penis = car association makes more sense than hanging out with your best buds and singing about Viagra, I suppose, particularly if you know anything about psychoanalysis.

Readers, what are your least favorite Big Pharma ads, and why? Short descriptions (and links to videos, if you have them) can be helpful for people who may have not seen the ads; please include them, if possible, so that we may all share in the unintentional hilarity.

Recommended Reading for November 16, 2010

Peggy Orenstein for the New York Times Magazine: The code-words of breast cancer awareness

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow.

Ally at Every Crooked Step Forward: Where I Write About (Not) Coming Out

I could have lied. But I couldn’t lie. I didn’t know asexual was anything, then, so I just said no, and then was forced to sit through all the speculation. They didn’t know, and I didn’t know enough to argue with them. People assumed I was undesirable, because of the CP, and I didn’t argue with them, though I wanted to because the assumption hurt, but the hurt was hard to explain, under the circumstances. People assumed I was too brain damaged to understand sex, and I couldn’t explain otherwise, because simply having no desire was enough to tell sexuals I didn’t understand.

Lisa at Sociological Images: Illustrating a “Normal” Life Course

By organizing birth control needs according to age, the slide show teaches viewers a socially-approved timeline for our sexual, marital, and reproductive lives.   Teen sex is invisible, having children in your 30s is ideal, and the end of a relationship is an option but, as Corina points out, not having children is not.

Wheelchair Dancer at cripwheels: Broken

Regardless of the state of Tommy’s mind and body, it is we who are broken.  It is we who drink in glorifications of war and heroism in the movies and kill the political systemic message of such poetry by treating it as individual expression.  It is we who refuse to provide support and systems of support to help our veterans; it is we who shame and silence them into a stiff upper lip.  We are the ones who both stare and look away.  Homelessness doesn’t respond to swelling music and huge parades.  PTSD isn’t best treated by ignoring it.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: NAMI (National Alliance on Mental Illness)

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

David Gorski at Science-Based Medicine: Homeopathy for fibromyalgia: The Huffington Post bombs again

As you might be able to guess, because fibromyalgia is a syndrome of unclear etiology with a wide variety of physical complaints, widely varying severity, and a clinical course that waxes and wanes, it is a woo magnet. Indeed, many conditions that scientists do not yet understand well and/or for which we do not yet have particularly good treatments are woo magnets.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Imperfections

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

Things That Make My Life Easier: Black Phoenix Alchemy Lab

[Image description: Four bottles of perfume in front of and resting upon some books; the bottles are labeled “Australian Copperhead,” “Banded Sea Snake,” “Cottonmouth,” and “Asp Viper,” respectively. Image courtesy of Black Phoenix Alchemy Lab.]

Today, I am taking a page from amandaw’s awesome series “Things That Make My Life Easier” and have chosen to spotlight the fantastically scented goodness of Black Phoenix Alchemy Lab. As a person with chronic pain, I have found that certain things having to do with the five senses that take my mind off of my pain — even for a few minutes — makes dealing with pain and fatigue much, much easier. While I am unsure of the scientific veracity of perfume oils and their use in general life-improvement for folks with pain issues (in my case, fibromyalgia, which for me usually causes intense muscle pain and moderate to severe fatigue), I have personally benefited from wearing the complex and often surprising essential oil blends in which the Lab specializes. While smelling nice certainly won’t bring my physical pain down from, say, an 8 to a 1 (on a scale of 1 to 10), many of these blends have helped me to relax, focus on a different sort of physical sensation that is not abjectly, horrendously painful, and generally be more comfortable as I go about my day.

Besides a “General Catalogue” consisting of hundreds of scents—all inspired by a diverse mix of people (comic-book heroes and heroines; H.P. Lovecraft), places (the “Wanderlust” line, which offers scents inspired by famous locales) and things (love [image on page is NSFW], myth and fairy tales, classic art, religion and spirituality, and Alice in Wonderland, to name just a few)—BPAL also offers Limited Edition blends. Currently, they are offering their annual Fall/Halloween scents; if you’ve ever wanted to smell like an apple orchard, fall leaves and smoke, or Halloween candy, one (or more) of these oils may be for you.

It is next-to-impossible for me to pick favorite blends, as mine seem to change by the day. There are a few that I consistently utilize, however: Blood Kiss is a bizarrely dark blend of vanilla, clove and cherry that I’ve been wearing for years (I’m on my third bottle of the stuff). Absinthe is effervescent, minty and (obviously) boozy. When I want to smell sort of like a head shop sans the moldy undertone, a couple drops of Sin do the trick. Aquatic scents seem to be my most-used “category,” with the salty, swampy Bayou being the one that I reach for most often, tied with the Limited Edition Sturgeon Moon (the latter is no longer available, unfortunately). The smoky, slightly citrusy goodness of Carnaval Diabolique (part of a sprawling LE series of the same name) makes for a great late summer/early fall scent, as does the sharp, lavender-tinged Casanova.

Of course, the very fact that I wear essential oil perfumes brings up another issue — how to be sensitive and accommodating to fellow PWDs who may have scent sensitivities, allergies, or who may have otherwise painful reactions to scented stimuli. When I’m planning to be out and about, I tend to wear a drop or two at most, usually applied with a q-tip, and allow ample time for the oil to dry before I leave the house; this is not a perfect solution, but I am still figuring out how to balance the benefits that I personally get from wearing these amazingly-crafted oils with the needs of other PWDs whom I may encounter in public.

Recommended Reading for August 24, 2010

Wheelchair Dancer: Body Matters, Edges, and Disability

We all experience limitations and restrictions.  Not all of those — like not being able to speak a second language — are disabilities.  The second language example is a true comment, and I would have thought that it was a pretty obviously bad comparison.  But it and other similar remarks kept coming up.  In addition to those comments, I was also thinking about a second order of experience: the kind where someone claimed kinship/commonality/knowing what I am going through on the basis of their limiting, but non-disabling experience.  I’m referring to the kind of thing like, for example, comparisons of feeling tired from having flu and the tiredness in chronic fatigue syndromes or, say, multiple sclerosis.  A second example is that feeling sad or disappointed is not the same as the emotion of depression.

Lena at the ch!cktionary: What My Feminist Agenda Looks Like

I reject the argument that feminists can’t fight for women and for poor, queer, disabled, and non-White people. Because guess what? Many women are poor, queer, disabled, and non-White. For them, being part of the latter means many more disadvantages and much more discrimination than just being a woman. A feminist agenda has to recognize that women are not simply all oppressed in the exact same way because they share a gender.

Thea Lim at Racialicious: Sympathy Grifting: The Intersection of Race, Gender, and Fraud

Much of [fraudulent cancer patient Ashley Kirilow’s] success seems attributed to the fact that she easily roused pity with her little lost girl story and her brave smile. Kirilow embodied a version of white womanhood that we want to believe in (or at least we’ve been socially conditioned to embrace it): pretty, plucky, determined, and in need of rescue.

Pam Belluck for the New York Times: Tai Chi Reported to Ease Fibromyalgia

A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.

Jane Hughes for the BBC News: New brain scan to diagnose autism

The Medical Research Council study looked at 20 non-autistic adults and 20 adults with Autism Spectrum Disorder (ASD).

They were initially diagnosed using traditional methods, and then given a 15 minute brain MRI scan. The images were reconstructed into 3D and were fed into a computer, which looked for tiny but significant differences.

Just

My beginning is like this: I was born a full three months before my expected arrival.

I apparently couldn’t wait the whole nine months to come into the world. This early arrival was rife with complications, however: a brain hemorrhage, one collapsed lung (I still have under-armpit scars from the surgery), and, the kicker — cerebral palsy as a result of premature birth. After they found the hemorrhage, the doctors did not expect me to survive.

The hemorrhage stopped on its own. No one could figure out why.

I was in the ICU for a long time after that — in a special plastic case to protect all three pounds of me from hospital elements.

My early birth was unexpected, as was my survival of the mysterious hemorrhage. Both of these things happened for no particular reason.

*

There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.

But what of those who are “born this way”? What could they possibly have done in their “past lives” to have disability and/or illness be a feature of their current life? Could I have been, for example, a dictator or Bathory-esque ruler in a past life? I am not one for metaphysics, so I am inclined to think that the answer is no. Besides, were there definitive proof of past lives, it’s not as if every single New Age person could have been a saint in his/her/zie’s past life. So when these folks try to utilize my CP, or my depression, or my fibromyalgia as “proof” that I am or was a bad person and they are good people who inhabit a world of unicorns pooping glitter or somesuch, I tend to get a little upset and/or snarky at their pushing pseudo-enlightened rationales as making any sort of sense.

Disability is not proof of a “just world.” It is not a punishment, nor a tragedy for those of us who live with all sorts of disabilities, or whatever dichotomous thing that various social and cultural attitudes have constructed it as. It is one facet of human experience.

For many of us, disability just exists, or just happens. And for whatever reason, this terrifies many currently-abled people.

Why am I surprised by this?

To begin, rather pithily: I have had very mixed experiences with medical professionals throughout my life. Some have been fantastic. Some have been middle-of-the-road. And, as you might expect to hear from a person with a chronic pain condition, some have been absolutely awful.

Recently, I had a fantastic experience in a consultation with the oral surgeon who will be — at the time of this writing — removing the three wisdom teeth that I have in my skull [note: by the time this post is up, I will be recovering from the surgery and therefore on a bit of a break from blogularly goings-on]. Given my past experiences with medical professionals, I was not optimistic going into the consultation. I have a pretty spotty history when it comes to dental sensitivity, have been labeled an “anxious” patient in the past because of said sensitivity issues, and thus have a mountain of concerns about surgical procedures because of the medical conditions that I already have — cerebral palsy and fibromyalgia among them.  I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).

Interestingly, this was one of those times where I would be happy to be wrong. The oral surgeon not only explained the actual procedure to me in great detail, but listened very patiently to my concerns about possible issues due to increased pain (possibly relating to fibro, as it tends to flare up after any medical procedure that involves high doses of medication that I do not normally take) and muscle spasms (that would be the cerebral palsy, which has left me with muscular weakness on the left side of my body and occasional spasm attacks in my left leg). He also asked many questions about both the fibro and the CP, and reassured me that he and his staff would watch for things relating to each condition that could possibly occur during and after the procedure.

This consultation — and the oral surgeon’s taking my concerns so seriously — was a welcome break from the fighting-an-uphill-battle-with-my-bare-hands sort of feeling that I’ve gotten from some past medical and health-related consultations. I am, of course, of the opinion that these sorts of positive experiences should not be this unusual, and that they apparently are so unusual gives me pause for a myriad of reasons.