Tag Archives: personal

Imperfections

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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.

But Really, It’s For Your Own Good…

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Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

Reactions, part two: Social aspects

bodies, i'm right here, identity, introspective, normality, othering, social attitudes, , , , , , , , , , , , , , , , , ,

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

Just

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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.

Where There is No Pain

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I am staring up at the sky, and I can see the clouds rolling by. I am going the other way. We are giving a nod to one another as we go our way.

The sounds above me are all muffled, of people going on with their lives. I put them out of my mind. They don’t mind me, and I certainly, at this moment, don’t care about them. The sounds around me are different. They are bubbled and thunderous but deadened. They don’t hurt like the stark sounds of being above.

I glide. Above, I ache, I hurt, I am slow. I can barely move forward. But here, I am a Titan. Gods wish they could move like me. This is where I want to be. My muscles move the way I want them to. They ache and scream with the movement, but there is support under every part of my body holding my limbs as I reach.

I turn face down now, tuck my head, and open my eyes. The world is clear, and the sun beams across the floor in ripples, because it isn’t even as strong as I am here. I expel my lungs as I stretch my legs, moving them like scissors, gently. Every gentle motion has so much power. The movements that bring me glances of pity above make me feel like Poseidon’s child here. I was made to use my body here.

I reach, grab, and pull, gently, and glide again. I turn my head (it doesn’t hurt!) and take in a desperate measure of air greedily. My torso turns as if it can just swivel freely. I look down below me, straightening my spine, and see the blue tiled “T” marking my distance. One. Two. Three, and a tuck, and my legs push me back the other way.

I want to stay here. I want to remain where there is no gravity to pull me against myself and bring the pain back. I dread later. I dread even ten minutes from now, because we all have to pay the piper…

The second lap is slower. I always start off too fast. It is always too long between these trips, or too long between seasons (it is never the same indoors). My body can move, but my lungs burn faster. I have to come up more.

Halfway through I have to stop.

My feet (they are tingling now…again) find the ground and my hands reach for the wall.

No. Please.

I fight on. Because I want to stay here.

Where it doesn’t hurt.

The sun beats down on me.

Reach. Grab. Pull.

And it isn’t just the water I grab for. It is time.

Tuck, push, kick.

Glide.

Under here I am alone with my thoughts, with how good it feels.

But my lungs ache for that air, and my body is tired, and my neck strains now when I turn for that air.

As I grasp that wall I am crying.

I need help out.

I am too tired to stand.

I have to rest.

And all I can think about is the next time I can get back in.

Originally Published at random babble… on 10 June 2010

Kids these days! The “Generation Y” panic, privilege, and erasure

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Recently, I read this odd article, penned by Judith Warner, in the New York Times–one in a stream of many that detail how excessively awful the current generation of young people (read: young workers) is at putting its collective nose to the grindstone, sucking it up, and generally not acting like a bunch of brats, or something.

Many of us have heard about, or come into contact with, some of these bright young things. They are heralded — or, more commonly, blasted — as naive, entitled, too optimistic, and over-confident. In many of these articles, their numerous faults are listed: They don’t know how to dress professionally! They expect to march into the workplace of their choice and immediately start making a six figure-salary! They think they are perfect! They want praise all of the time! (Does no one who writes these sorts of articles stop to consider that many human beings want praise when they complete a task to the best of their abilities?) They have tattoos, dyed hair, and iPods! EVERYBODY PANIC, because the American workplace is apparently going to be dragged down by Generation Y’s entitlement, narcissism and laziness! This narrative, however, seems to apply mostly to a very specific subset of the population (and even the picture that accompanies the NYT article reinforces this): young, able-bodied, middle to upper-middle class, college-educated white people.

This erases, or conveniently ignores, a hell of a lot of folks who are not young, abled, middle/upper-middle class, and white. It erases young workers who may not have had the “expected” educational opportunities (such as college), or who had to take more than the expected four years to finish their degree, or who did not finish school. It erases people whose parents or family members may not have been quite so “involved” in their education, or in their lives at all. Of course, it also erases young people with disabilities — both those who cannot work, and those who want to work but who may be bumping up against various narratives such as that of the “entitled” Generation Y kid. Some of us have psychological issues or disabilities that put us completely at odds with the “overly-confident” and “entitled” stereotype that apparently befits the current generation — because we cannot stop worrying despite the fact that we are supposed to be totally optimistic and confident all of the time, always thinking that the roads leading to our perfect job will be lined with rainbows, fluffy bunnies, and gold.

Some of us have physical disabilities, chronic pain, or chronic illnesses that prevent us from working 40-hour weeks (or more); asking for accommodations or disclosing our condition(s), we fear, may make us look “entitled,” or like we do not want to put in the time necessary to work our way up — even if this is not the case. The fact is that many people, and many young people, with disabilities are already at a tremendous disadvantage when it comes to the labor market and making a living. Not only are many people with disabilities, at least in the U.S., more likely to face lengthy stretches of unemployment and/or live in poverty regardless of age, but many face additional hostility, discrimination, and unreasonable demands, both in the workplace and from society at large because of their disabilities.

While I am not saying that these over-entitled Generation Y-ers don’t exist (I’ve had run-ins with quite a few of them, myself), I am struck by the fact that the narrative surrounding them is so dependent upon erasing or ignoring certain people whose bodies and experiences do not fit the “expected” attitudes about labor that have been traditionally upheld by American culture. Many of these attitudes, furthermore, rely heavily on binaries that reinforce who “counts” and who does not: You either work full-time, or you’re lazy. You’re willing to be mistreated in the workplace and do whatever it takes “for the job,” or you’re a wimp. Suck it up, or go home. If you’re not making enough money to live on or are poor, you just aren’t working hard enough. If you ask for “accommodations,” you’re asking for too much — just do your job! You have to work hard to “make it,” and if you don’t work hard enough, it’s your fault. If you don’t like your job or face daily mistreatment, you can always quit and find another one, right? But if you can’t, it’s your fault, and why did you quit that job, anyway? These attitudes surrounding work affect people with disabilities in a wide variety of age groups and generational cohorts, and this is a crucial part of why they are so important to critically question and examine.

The message for Generation Y, in general, may be “Get over yourself,” but the message for those who do not fit the characteristics of the “average” Generation Y worker is more severe — and ultimately more dire.

[Cross-posted at ham blog]

How Many Straws?

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A blue and white lane-marking buoy in a swimming pool.I know that I am not 18 any more.

One of my doctors kindly pointed that out to me recently.

What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.

When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.

Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.

I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).

Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.

I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.

Until my abdominal muscles gave out.

I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.

Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.

Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?

After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.

Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.

Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.

Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.

It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?

What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?

Or am I making mountains out of molehills here?

Photo credit: ashleigh290

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) →

When Accommodations Conflict (Continued)

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Reflecting on the extremely thought provoking post by abbyjean earlier, I was walking to breakfast with The Guy (caution, try not to walk while lost in thought, OYD) on a day when I was low on sleep, high on pain, and therefore using my cane. (edit: I just saw my typo! I had a funny visual of me trying to balance on a can! HA!)

Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.

There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.

I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).

So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?

Recognition

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Y’all may know I’m mentally ill. I have mentioned a time or eighteen. It’s a thing I do, talking about my experiences with mental illness and mental health care, trying to provide an anecdote to do with the data.

What I talk about somewhat less is having cognitive variations and learning disabilities. Which I do. Most of my life I thought I didn’t. I was never evaluated for learning disabilities; I got good marks in school (some of the time). I was not evaluated for autism spectrum disorders. When I was a child ASD wasn’t a diagnosis at all. There was just autism and the perception of it was really scary: autism meant kids who didn’t talk at all and had to be put in helmets so they didn’t hurt themselves too much from banging their heads against the wall and lived in institutions. Autism definitely didn’t mean anyone like me. (Even though I did have repetitive motion behaviours — my relatives talk about it a lot as a cute baby story.) When autism spectrum disorders did become diagnoses in the U.S. I was an adult and adults are rarely evaluated for autism. Or cognitive variations. Or learning disabilities. They’re childhood things aren’t they? (Don’t those kids grow into adults?)[1. On my Big-Ass List of Shit What Needs Doing is finding someone who can do that evaluation and see about official diagnosis; if nothing else it would help to have to throw at the Social Security Administration for disability stuff. But some people who have known me a long time and are not unfamiliar with autism traits have said that autism is not inconsistent with my history and my behaviour. Even if they don’t feel qualified to make a full-out diagnosis. They include my wife — who is admittedly not all that objective but it is kind of her field (one of her Master’s degrees is in psychology) — and my general practitioner (who reads up on things her patients ask about when she doesn’t know) and the therapist I’ve seen, off and on, since before I met my wife. What with there being rather a lot of spite for people who are ‘self-diagnosed’ I usually write about the traits directly and avoid the diagnostic label. But I’m reasonably confident I am actually autistic. The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn. But I have seen hatboxen in fora like F•rk write hatboxish shit and follow it up with “i cant help it i got teh assburgers hur hur” which is yeah appalling behaviour.]

It is real damn frustrating. It’s hard to start anything and harder to finish what I do start. I would love to be organised but I can’t; when I have to put something in my hands down I have to put it down now and that means wherever I’m at and not wherever that thing lives. Sometimes digits transpose when I am reading or keying or writing them and sometimes the words I read are not the words on the page but I learned a long time ago to compensate well enough no one knew. I compensated well enough I forgot I had this thing that might be dyslexia until I started paying attention to what my perceptions and thoughts were doing. I have a lot of trouble communicating in person using my voice — I don’t process speech well and I don’t speak well.

And sometimes I am just not good at thinking. (Lately this has been a lot of the time.) It’s hard to even complain about having trouble thinking to my wife. She perceives it as Moira Is Being All Negative About Herself Again and she interrupts me with “You’re not stupid. You’re one of the smartest people I know” and I’m all faaaaaaack what’s the point? and I just shut up again. I’ve had this conversation and it doesn’t go anywhere nice.

Thing is I’m not saying “I feel stupid and I don’t like myself for it.” Okay there’s some of that I wouldn’t be me without some of that but it’s more frustration at not being able to do shit what is needful. I am trying to say I feel stupid and I need help doing shit. Please. Being smart does not help me. Being able to rattle on about how cool quantum mechanics was when I finally managed to lose the distortions dualism imposes on quantum-scale stuffs and wrap my head around monist models of quantum-scale mechanics is not a useful skill in daily living. In fact being perceived as highly intelligent whilst actually having cognitive impairments has been an enormous pain in the ass. People assume because I can understand quantum mechanics and high-order differential equations (and possibly most important because I have a talent for writing) I am globally smart and can apply that intelligence to any problem needing solving. Which I can’t. But I have trouble getting help because I’m smart.

It’s more than just “Gosh Moira you should be able to do these things.” It’s also “Gosh Moira you are so smart you can’t possibly have cognitive impairments.” And people feel taken advantage of when they do help. They’ll see me do something fucking ludicrous nerdy like building a reference document for my tabletop role-playing-game using endnotes and a bibliography in compliance with The Chicago Manual of Style. I can’t blame anyone for wondering why — if I can do that — I can’t do something that. Y’know. Pays? There’s a Voice in my head saying the same thing all day every day. (Most of the time it looks like I’m working on the nerd project I actually spend not working on it. It’s just since no one’s paying me to do the nerd project no one cares if I’m reading manga instead of working.)

Only rarely do I get any farther than “I feel stupid” before I get cut off. It’s exhausting, trying to get the rest of this said and heard, so that’s usually where it stops. In text — in a blog post — I can say it all at once. Nobody has to read it all, but I can say it. There’s maybe a better chance for communication this way.