Tag Archives: pain

Recommended Reading for December 14, 2010

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K__ at Feminists with FSD: Notes on MTV’s True Life: I Can’t Have Sex

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Carol at Aspieadvocate: I’m an Embarrassment

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

David Gorksi at Science-Based Medicine: Death by “alternative” medicine: Who’s to blame? [trigger warning]

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Arwyn at Raising My Boychick: How far I’ve come

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

Linsay at Autist’s Corner: Autism-related gene spotlight: CNTNAP2

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

In praise of speech-to-text software

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One thing that has helped me quite a bit as a blogger, writer, grad student and person with chronic pain subject to flare-ups has been speech-to-text software. The basic idea is fairly self-evident: You install the software, plug in the headset that comes with it, open up the word processing program of your choice, and start talking.

Repetitive motion is one of those things that can be the bane of one’s existence if that person happens to have chronic pain issues; while there are people who might say, Oh, typing at a computer can’t be that painful or Just work through the pain or some other ridiculous piece of “advice,” typing can, at times, be enormously painful or draining for some folks with pain issues. No matter how much one may want to complete a piece, post or assignment, sometimes it just will not happen due to pain. When it feels like your hands are encased in cement blocks, there is no “working through the pain.” Having your hands and wrists feel like they have been set on fire by pain when you are on a deadline — like a lot of circumstances surrounding pain flares — can be excruciating. It’s kind of like having your hands and wrists feel like the Human Torch, but without any of the cool superpowers.

With speech-to-text, the additional pain brought on by repetitive typing is significantly reduced, as it takes at least some of the typing (but not editing, as I will address below) out of the equation. There are some additional issues to consider, however: one is “fibro fog,” the name given to some of the cognitive effects of a fibromyalgia flare, which can, for the person experiencing the flare, make it difficult to put thoughts, words and sentences together with anything resembling coherency. This is more of a condition issue than one that has to do with typing, but it’s fairly obvious as to how fibro-fog could impact the use of text-to-speech: if your thoughts are jumbled because of pain and fatigue, it’s likely that they will be just as jumbled regardless of whether you are typing or speaking into a text-to-speech headset. I’m fairly lucky with fibro-fog myself, as it tends to be rather mild unless I am experiencing a pain flare that feels closer to acute pain than chronic, but typing is one of those processes that can seem bizarrely confusing during a massive pain flare-up (and the whole “simple things as confusing” side effect is damn near impossible to truly understand unless you’ve been through it).

Of course, there are some aspects of text-to-speech software that are less than perfect: similar to the iPhone’s auto-correct feature (some of the amazing slip-ups of which have been documented by websites such as Damn You Autocorrect),  speech-to-text software can “read” one spoken word or phrase as something else entirely, sometimes producing hilarious (or irritating) fragments that often make no sense within the context of what you are actually writing. My personal favorite thus far has been my speech-to-text program “translating” Judith Butler as Judas butt lark, which made me wonder if I need to work on my pronunciation skills if only for the convenience of my software program.

There is also the cost issue: many speech-to-text software programs are expensive. In a utopia, everyone who could benefit from text-to-speech programs would have a reliable and fairly-priced one ready for use. I’m one of those weirdos who thinks that accessible technology should not be something available only to those who can afford to pay for it, but that, unfortunately, is most likely a long time coming.

Things That Make My Life Easier, A Reintroduction (Part 1 of 3)

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A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier.

What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

Next: A Reintroduction (Part 2 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Recommended Reading for August 17, 2010

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Sarah Fenske at the Phoenix New Times: ‘Til Death Do Us Part: They Got Married. Then Everything Changed

This is a love story, albeit one with a medical twist.

Unbeknownst to anyone — including Kevin himself — there was a tumor the size of a Granny Smith apple pressing onto Kevin’s brain.

Kevin didn’t need therapy. He needed surgery.

Patient C: Pain: Attitudes

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els[e] with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Wheelchair Dancer at Feministe: Just Who You Callin’ White

My interlocutor poked me: “Your mama white?” All thoughts of positive interaction slipped beyond my grasp. I knew that we weren’t actually talking about race and yet. Yet, I answered her question literally. My English accent returning more strongly than usual, I talked about my white father and my Afro-Caribbean mother; I spoke bitterly about the loss of Spanish and Creole-speaking family members and English as the language of acceptance. I gave her the history full and square. “Now,” I demanded, “do you think of me as white?”

In FWD-Contributors-Elsewhere news, our own s.e. smith is currently guestblogging at Bitch Magazine’s Social Commentary blog! The series is called Push(back) at the Intersections, and you can read the intro post here. An excerpt:

Feminism has a problematic history. A profound lack of awareness about this history means that we engage in the same dynamics over and over again. For example, the failure of many nondisabled feminists to recognize the history of eugenics in the reproductive rights movement means that it’s hard to understand why disabled feminists feel marginalized by the mainstream feminist and reproductive rights movements. Likewise, a lack of awareness about the history of transphobia in the feminist movement leads many cisgendered feminists to stumble unawares into very loaded conversations.

You can keep up with s.e.’s series of guest posts over at Bitch Magazine!

And finally, my good friend Paolo Sambrano, an amazing artist, performer and writer whom I have known for many years, is looking for funding for his incredible solo show Bi-Poseur, in which he humorously chronicles his experiences with life, death, mental illness, and, in his words, “the quest to write the perfect suicide note.” The show premiered to rave reviews earlier this year, and Paolo is currently attempting to fund a month-long engagement of the show in the San Francisco Bay Area, beginning in September; donations will go toward things like renting theater space, printing programs, marketing the show, hiring a tech person, and more. Here’s some info about the show:

Bi-Poseur [is] a pop-culture encrusted, kinetic look at the intricacies of trying to hang oneself with a Playstation controller, possibly being bi-polar, full scholarships to exclusive Bay Area prep schools, psych wards with twelve year old white supremacists, finally grieving the loss of a parent, motivational speaking, to live tweeting your own funeral. And push-ups. Among other things.

If you’d like to learn more, purchase tickets to the show or make a donation, you can visit Paolo’s Kickstarter page, or his website. I urge you to donate if you can (some neat donation perks are offered at various price points), and go see the show if possible!

Recommended reading for May 11, 2010

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sqbr at Poking at Thorns (with gloves on): Disability in Speculative Fiction: Monsters, mutants and muggles

Fiction reflects social attitudes, and the social attitudes to disabled people tend to suck. Disabled people are presented as scary, pathetic, exotic, demanding, laughable, etc. But some tropes are popular/unique to SF.

It’s not all bad: speculative fiction allows for powerful allegory, and can also make very interesting explorations/extrapolations of future attitudes/experiences of disability.

Jamer Hunt (Fast Company magazine): Our Bodies, Our Quantified Selves

The data generated by this micro-physics of the everyday has the potential to create unprecedented, massive databases available for projects from a dizzying array of fields. Imagine what researchers studying disease epidemiology might do with this information, or anthropologists exploring changing social patterns within the digital proletariat.

Courtney at From Austin to A&M: Cosplay, race, ability and gender; or, who gets to dress up as whom?

Doing cosplay as a femme!Doctor (or a black Doctor, or a visibly disabled Doctor, etc.) is part necessity (as in, I am in a lady-body, so if I want to cosplay as the Doctor, he would have to be a lady-body-Doctor, like a person in a wheelchair would have to be a wheelchair-user Doctor, or a black person would have to be a black Doctor). But it’s also a way for fans to see themselves in the Doctor, as the unquestioned protagonist of the show. Doctor Who fans can say all they like that DW is progressive enough in its way, but it’s still dated by its insistence that the main character be a white British man.

Lisa Sanders (NYT Magazine): Diagnosis — Pregnant and Pained

She didn’t have a fever, but the racking cough made her body ache all over. Her husband said it sounded as if she were coughing up a lung. Her OB said it was probably a virus. Whatever it was, it didn’t go away.

Switchin’ to Glide: “Independent Women”: Privileged Feminist Ideologies and Ableism

Independence or the pursuit thereof is a pursuit of privilege; the less that one has to depend on networks and relationships the more “successful” that person is. This is a profoundly ableist notion, in the sense that it constructs any sort of dependency as an obstacle to “success,” and because of the way our society is structured, people who are disabled are neccessarily dependent on various support systems.

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

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(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom. Continue reading I can’t count on anybody to understand. (Blogging Against Disablism Day 2010) →

A Saturday sketch

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(Cross-posted at three rivers fog.)

I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.

Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.

It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.

“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.

He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.

A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”

Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”

Why I don’t think it’s funny to use Limbaugh’s drug abuse as a punchline.

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Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at three rivers fog.)

Inertia

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Asking for help is something I have never been good at. It’s rather like standing in front of a car hurdling toward you, intending to push it in the opposite direction. It requires an enormous amount of resistance. And I’m almost certain to come away with some sort of injury.

Lying in bed the other night, I had a realization. I seem to have two modes of being: at rest, sitting or leaning or lying in one place, unmoving, still; or in motion, pushing, moving, rushing, doing, working, over-working. And it is very, very difficult for me to move from one state to another. It is not as easy as just get up and go or sit down and stop. It would be expected, with my disabilities, that I would have trouble getting up from a state of rest to start doing, but wouldn’t you think it would be easy to just stop myself from doing and rest?

But it’s not. I find it very, very difficult to stop moving, working, doing when I am already doing it. Very difficult. In fact, I actually have to work at stopping working. It’s like once the do switch is on in my brain, turning it off is about as easy as pushing that hurdling car. I get to a point where I don’t even notice that I am doing; my consciousness turns off and I am pushing forward on autopilot, working from habit, memorized routines, just going and going — and my awareness has been switched off, perhaps as a way to avoid feeling the pain?, but that means I don’t know when it’s time to stop. I don’t know when I’ve reached the critical point, when I’ve done too much, when I cannot do any more — often, I don’t know until my body just stops doing and I am confused inside it, trying to make it move and being denied, and it takes time for my consciousness to boot back up, to kick on and make me realize oh — I need to stop.

It has come to a point where I’ve learned that I need to stop before it feels like I need to stop, because my body and brain simply do not have the ability to sound the alarm for me. Even when my body can’t keep going anymore, no matter how much I push it, it still doesn’t feel like I can’t keep going anymore.

So I’ve been teaching myself, over the years, to force an override at a certain point — not based on what I’m feeling at the moment, but based on predetermined amounts of time/work that I believe is what I can handle on the balance. It’s hard, because I’m so stuck in that inertia of doing that I often don’t even remember to keep track of the amount of time/work that has passed, so I might forget for some time after I’ve reached that point, and then try to abort belatedly.

Either way, even when I’m “being good” and recognizing when that predetermined point has come, the act of overriding my natural inertia — my natural tendency to keep moving — is not as easy as flipping a switch. I actually have to go through a process of convincing myself that yes, it is time to stop, and yes, I really should stop, no, I should not keep going, and yes, it is okay to stop, really, it’s okay, and yes, I need it — and so on (and on, and on, and on). And then even if I am convinced, I have to try to push in the opposite direction of my body pushing to go and do. And pushing your body to stop pushing is about as technically-impossible as it sounds.

Now, convincing myself just that I should stop doing is a difficult enough thing to do. But add in a sense of pride… and a sense of guilt… and suddenly convincing myself that I should do (or stop doing) something doesn’t seem like such a hard thing in comparison.

***

I am one of two clerks working on our program at my office. Last week, for three days, my partner clerk was not there — it was just me running the show. And I happen to think that I am knowledgeable and capable enough to do a pretty good job of it. The problem is that we are severely short-staffed — the two of us in our corner of the building are already balancing a workload that should require four or five clerks. So when one of the two is gone, well, things move from chaos to crisis, so to speak.

I have an amazing supervisor. I absolutely adore her. And she was keeping an eye out for me. She kept coming back and asking if there was anything she could help with.

And for that first day, I kept saying no. And I thought it was legitimate! One of the main assignments is something she is not supposed to do at all, and another couple are things that I just thought would be more complicated to have someone else do than to do myself. So I said no.

And then my husband poked a little bit of fun at me — he works at the same office — saying that my supervisor had been talking with him (casually) and mentioned that she kept trying to offer help, and I kept refusing. And they shared a laugh, and he said yeah, that sounds like her. She’s not very good about asking for help when she needs it.

And I needed it. I just couldn’t convince myself inside that I needed it, that it would help, that it would be OK to ask, and so forth. I was already so overwhelmed and using so much energy, and I watched that car hurtling toward me and knew I did not have the strength required to push it the other way. Not on top of everything else I was doing. I did not have the capacity to make myself ask.

Because I’m not supposed to ask for help. That means admitting I can’t do my job. It means admitting my disability does make me less capable than other people. It means admitting my disability does exist and does affect me. And I’m not supposed to ask for help, because other people can’t spend their time and energy doing something for my sake. It’s not fair to them. I don’t deserve that, to have anyone other than me devote a single second to me. Other people would deserve that, but I am not deserving. If I ask for help, I am telling that person “I am worthless. Useless. I can’t do anything right.”

Asking for help means sending the message to the people around me that I am actually not as good a worker (as good a person) as I keep insisting to them that I am. That actually, I am inept and incapable. That I can’t do anything right, that I do mess things up.

Asking for help is asking for special treatment. Asking for help is asking other people to pretend like I deserve the same consideration as everyone else, and deserve to be considered just as capable as everyone else, while also demanding that they treat me differently, do special things for me that no one else gets to have done. Everyone else has to stand on their own, and here I am demanding that all these people prop me up and say that it’s just the same as that person over there standing on their own.

Every single time I need help, I have to fight these thoughts. Even if I don’t actually think them consciously. Every single time I need help I have to take time and energy to refute all of these thoughts to myself. I have to take time and energy to prove all those thoughts wrong. And that takes quite a lot of energy.

So I don’t ask. Even when I need it. Even when I know I need it. And even when I know, intellectually, consciously, that it is OK to ask for help, and that I should ask for help. I still don’t ask.

Because by the time I’m needing help, I’m already at my limits. I certainly don’t have any energy left to deal with that hurtling car.

(Cross-posted at three rivers fog.)

http://amandaw.tumblr.com/post/273729603/snow-is-predicted-for-the-valley-floor-here-in