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.”

It’s important to get perspectives from people who aren’t necessarily connected (having it themselves, or having a close friend/family member with it) so don’t feel like it’s irrelevant if the people you know don’t know a whole lot about it. That’s the point!

WASHINGTON, Aug. 18 /PRNewswire-USNewswire/ — Men’s Health Network (MHN) has launched an online survey to gauge awareness, knowledge, and willingness of men to take action when faced with the signs and symptoms of fibromyalgia. MHN is collaborating with the American Pain Foundation and National Fibromyalgia Association to encourage men, women and families nationwide to participate in the survey effort.

An estimated 10 million Americans suffer from this debilitating chronic pain syndrome, which impacts women and men physically, mentally and socially. The condition primarily affects women and has long been labeled a “woman’s disease.” However, men suffer from the condition as both patients and as caregivers for the women and loved ones in their lives.

“This survey will help us understand what men know, or more importantly don’t know, about fibromyalgia, its symptoms, and a man’s willingness to discuss any pain, discomfort, fatigue and other signs of the condition with his physician. Men are raised to believe that big boys don’t cry. They are told to ’shake it off’ and to ‘take it like a man.’ Showing pain is showing weakness for many men,” says Scott Williams, Vice President, Men’s Health Network.

Male sufferers are often reluctant to admit experiencing severe pain or discomfort, and as a result, may report milder symptoms then they actually have, making it difficult for healthcare providers to accurately diagnose fibromyalgia.

“Fibromyalgia, though very common, is a misunderstood and very under-diagnosed disease. It has a reputation of affecting more women than men, but I am certain that the disease is far more prevalent in men than is reported in the data. It’s a perfect disease to stay under the radar for men since men are saddled with the harmful belief that pain is something to endure and not report,” said Will Rowe, Chief Executive Officer, American Pain Foundation.

Fibromyalgia can cause absenteeism and presenteeism issues in the workplace, relationship/family troubles at home, and struggles with pain, fatigue, GI disorders, and headaches, etc.

“The National Fibromyalgia Association welcomes this opportunity to collaborate with Men’s Health Network on the survey effort. Although 10 to 20 percent of fibromyalgia patients are males, few scientific studies have been done in this population,” said Lynne Matallana, President and Founder, National Fibromyalgia Association.

To learn more and to participate in the online survey please visit: www.menshealthnetwork.org/fmsurvey.php.

***

Once my endometriosis was diagnosed, my gynecologist said that my best choice for treatment was an injection called Lupron Depot.

Because the endometriosis small and diffuse, surgery was not an option — there were no large masses that could simply be cut out — rather, it was more like a thin layer covering everything in spots.

Lupron is a gonadotropin-releasing hormone antagonist; it is used for a variety of things including chemical castration of male sex offenders. In women with certain reproductive conditions, it works by stopping the production of the hormone estrogen in the body. Estrogen is what tells the endometrium to grow, and therefore what inflames the endometrial implants outside the uterus. Therefore, by stopping the production of estrogen for a set time — six months; twelve if the first six were unsuccessful — you would hope to shrink the implants that are already there. Essentially, what you are doing is inducing a six-month menopause.

Lupron is not aspirin. It is not a trivial drug. It makes serious changes to your body. Most women do not finish the full six months. I did, and the nurses were genuinely impressed when I came in for my last shot. None of their patients had ever taken a full round before.

And if the pain comes back immediately after stopping — which, in me, it did — they want you to go a second six-month round. (That is the limit due to risk of developing osteoporosis.)

Honestly — I kind of want to know the women who actually made it through twelve months of that drug, if my nurses had never seen anyone make it the first six.

It was not a fun six months. At all. (This is how it felt in real time.) I earned six months without any periods (I would have gone through one or two in that time on my birth control, so it wasn’t a huge benefit) and a couple months’ reprieve from the pain. In exchange, I went through numerous side effects, from the awful spasms, dizziness, fainting and tremors to considerable hair loss to hot flashes and uncontrollable sweating to sudden overwhelming nausea to weight gain.

And now, ten months after stopping the treatment? I wish I’d never done it.

I didn’t start birth control until age 19. Until that time, I was letting my body go through its natural cycle. Which must have been brimming with estrogen, because the pain was bad. It kept me out of school at least 1-2 days a month for period pain alone (before we even consider my fibromyalgia). It is by far the worst pain I have ever experienced — even with the awful migraines I get where, literally, a twitch (anywhere) causes so much pain throughout the body that I want to scream, but the movement and force required to make any sound at all would hurt just as much — so I stay stiff and silent and suffer until there’s enough of a window to down some pain meds.

The cramps I get on my “natural” (no hormonal medications) period — the pain comes in waves, crashing over me, exploding through every ligament and nerve in my body, rolling up and down the length of my torso. I spent many days in the fetal position on the floor of the bathroom, wishing I could just cease to exist right then and there, in too much pain for the thoughts to ever get as far as “movement to make it happen.”

And, well, suffice to say it affected the bathroom cycle too. I’ll leave it at that.

The pain, even in between cramps, is bad enough that I could not sit upright for more than maybe an hour’s total time throughout the entire first day — I was either in bed, on the couch, on the floor, or lying down in a chair in front of the computer. And the rest of the week, it was difficult to stand upright and walk — I needed to reach out a lot for balance; I couldn’t straighten my back it hurt too bad. There was this intense heavy pain in the muscles of my upper legs. And I needed heat — bad — any cold or dampness felt like my blood was turning to acid and eating me inside out. I reveled in the sun; I couldn’t leave the house without heating pads; I sat down under the hot hot water in the shower. Wintertime (which, in central California, got as low as the 40s during the day, but was damp and moist with fog) was excruciating.

I went through all of this approximately one week (or a little more) out of every month in my adolescent life. And this is all ignoring the actual period.

When I got on birth control — after a brief period on a tricyclic medication (Ortho Tri-Cyclin Lo), which made me break out in painful cystic acne and left me irritable enough that a fly could be cause for an angry breakdown — things settled down somewhat — especially after a kind gynecologist prescribed a low-dose monocyclic pill (Mircette) continuously; that is, skip the placebo week in the pack, taking four packs in a row before allowing that period week. That meant one period every three months, and a lightened period at that — it was still very painful, but not suicidal-thought-inducing painful like it was “naturally.” And during the twelve weeks on the hormones, I was mostly free of the continual lower abdomen/pelvic area pain that I suffered even between periods on my “natural” cycle.

I stayed like this until the beginning of last year, when the lower back/pelvic pain set in to stay, leading to the diagnosis of endometriosis and the Lupron treatment.

And after the Lupron, now — back on that same low-dose pill, taken continuously — I am going through pain that is far closer to my “natural” cycle pain than to the pain I went through for the three years prior to the Lupron. I am having cramps that sometimes keep me from being able to move to get out of bed in the morning and sometimes hurt so bad I have to get up because it hurts too much lying down. The back pain continues; my methods of treatment are definitely helping considerably, but the pain is more persistent and more severe than it was last year. My, um, “bathroom cycle” — which was relieved of pain completely during the three pre-Lupron birth control years — has returned to the cycle I had before I ever started hormone treatment. The only thing that hasn’t returned is that lead-like pain in my leg muscles, that acid-blood feeling.

And it is frustrating me. I wish I had never started the Lupron in the first place. I read up on it before agreeing to take it, and I knew there were a lot of horror stories and a lot of women really, really hated it. But what other treatment did I have? this seemed like something that — even if it was difficult during — would make a difference in the long run. So I did it, and I stuck it out, because how would I know what good it could do if I quit?

I don’t know if maybe it’s because I spent that six months estrogen-free, and now I am on a pill which, though low-dose, does contain estrogen — so suddenly my body is feeling an increase in estrogen, thereby causing more inflammation and therefore more pain. I have no idea; I do my research but I am still a layperson. But there can be no argument that my situation is considerably worse than it was before I went through the Lupron. And it’s been this way for ten months. This is no mere readjustment.

***

Next post: on the visible physical changes, body-image adjustment and dysmorphia.

The reason they give, at the end of the article: “the benefits of using the medication for pain relief at recommended doses outweighs the safety risks at this time.” If nothing else, it is somewhat encouraging. If this is their thinking on Darvon/Darvocet, we can hope that similar thinking will guide their decision on Vicodin/Percocet.

***

And according to the New York Times, the FDA

… is not required to follow the recommendations of its advisory panels, but it usually does.

Emphasis mine. In other words: the ball is rolling.

Vicodin and Percocet are two commonly-prescribed narcotic painkillers. They combine hydrocodone or oxycodone (respectively), the narcotic agent, with acetaminophen, brand name Tylenol.

Acetaminophen is coming under fire because abuse of the drug can lead to liver damage. The safe limit for acetaminophen has generally been regarded as 4,000mg per day. That translates to two extra-strength Tylenol (500mg each), four times a day (eight pills total). The dose of acetaminophen in various combination drugs varies, usually 325mg but ranging up to 750mg.

The panel voted against a ban on over-the-counter cold, flu and sinus relief medications, the vast majority which contain acetaminophen. Apparently these medications aren’t a concern, despite containing just as much acetaminophen and being available over-the-counter, where consumers do not have a doctor and pharmacist counseling them on how to take the medication.

This is not to deny that many practitioners — including, infamously, dentists — throw out prescriptions without a second thought. But the number of such practitioners is much lower than commonly perceived, and restrictions on narcotic painkillers will have a negative effect on chronic pain patients, who have to jump through an increasing number of hoops to obtain effective treatment.

I’m sure many people will jump in the comments to “inform” me that narcotic use for chronic pain is dangerous and inadvisable. This is simply wrong; when there is a medical professional overseeing a patient’s pain management regimen, carefully monitoring the use of such drugs, these pain killers can make an enormous difference in a patient’s quality of life. Dosages will have to be watched, as patients develop a tolerance to narcotics over time, but this does not preclude the use of narcotics whatsoever.

In medical terminology, there is a distinction between addiction and dependence. Generally, addiction occurs when a person takes a drug for which they have no medical need, whereas dependence is a patient taking that same drug for a medical purpose. Another way of putting it is that an addicted person uses a drug to escape from life, whereas a dependent person uses a drug to get on with their life.

With knowledge of the potential for dependence in mind, painkillers are a viable treatment option for chronic pain patients. Many patients do not respond to other available treatments (whether pharmaceutical or otherwise), or they do but those improvements ultimately still leave them in considerable pain. The range of available treatments today may not work for every patient — there may be other conditions and considerations that would make one drug dangerous, or another drug might trigger severe side effects, or another drug may just plain not work for them. Every body is different; every person’s body chemistry will interact differently with a certain drug. Considering this, it is important to leave open the option of using narcotic painkillers for chronic pain patients.

They are, obviously, not a first line treatment! Trust me, we know that. But that doesn’t mean it cannot therefore be an available treatment at all.

One article attempts to assuage the concerns of such patients, in a somewhat patronizing tone. A doctor says that practitioners can simply prescribe acetaminophen-free narcotics and advise the patient to take a Tylenol with it. If a practitioner is going to advise that much to a patient, why can’t sie just advise, “Don’t take more than X per day, and check with us before taking any over-the-counter medication,” in the first place? If it’s as simple as telling a doctor to advise a patient on how best to take the medication — why can’t they just do that, instead of taking away an important treatment option for patients?

It is telling, I think, that they voted to ban the pain killers but not the Nyquil. They see narcotic users as other people — the poor people, the drug addicts and traffickers. But the family next door uses Nyquil. The family next door is trusted to be responsible. The Other People are not.

I have been using Vicodin as a part of my pain management routine for almost seven years. As I wrote in a letter to my doctor earlier this year:

The adjustments we made to my other medications were the driving force behind my ability to take on an increasing amount of work – from six hours a week as a restaurant greeter when I met [my doctor], to 20-30 hours a week retail sales, and now to a full-time nine-to-five clerical job. Up until two months ago, for all the change that I went through physically, my hydrocodone usage only went up a small amount – from 1.5/day average to 2/day average.

And I do not rely solely on medication to treat my pain and fatigue. I practice good sleep hygiene: I make sure to go to bed around the same time every night and wake up around the same time every morning, allowing myself 8-9 hours of uninterrupted sleep. (I know that is actually more than recommended for healthy adults, but because research shows fibromyalgia symptoms seem to stem from an interrupted sleep cycle, making the sleep less restful, I need a little more to make up for it.) I make my sleeping environment comfortable in terms of light, sound, and temperature. I maintain a very careful balance of physical activity and rest. I do my best to get light but regular low-impact exercise – I’ve done everything from light walking to weight lifting to Pilates. I am careful to identify things that trigger pain, such as clothing that is too restrictive around the shoulders and hips or certain chemical odors, and then eliminate them from my life to whatever extent possible. I have been through cognitive-behavioral therapy; I have been to stress-management workshops; I know breathing exercises and other coping strategies. I have an entire collection of heating pads at home – portable ones, electric, moist microwavable pads – which I use quite frequently. Dr. H recently helped me procure a TENS unit to treat my recurrent back pain, which has been the single biggest factor in my ability to work this new full-time job. It reduces my pain significantly and thus reduces my use of the pain killers.

I have also tried a variety of other techniques and treatments that just ended up not working for me. Those listed above are those that turned out to work, and each is an important and indispensable part of managing my chronic pain.

Vicodin is only one part of my pain management routine. But one that would significantly affect me if it were taken away. I would have to quit my job. I would do a lot less work around the house — and my husband already does more than half, even when I’m not working. I would be confined to my house, as the amount of trips outside (grocery shopping, doctor appointments, etc.) would be significantly harder on me. As I explained a bit further down in that letter:

I explained to him that, for everything my other medications do for my pain, there are many times where if I want to be able to get up and do something, I need the pain killers. It not only kills the pain, so to speak, but it gives me energy – to try to describe it more accurately, it lifts a weight from my body, so that I can move more freely. Without it, unless I have been doing absolutely nothing but resting for days previous, just moving, lifting my legs and reaching my arms and pushing my body through the air, is cause for a sort of generalized, all-over ache. I feel it in the skin and muscles of whichever part I am trying to move. With the pain killers, that feeling is gone. I can stand up and walk; I can reach to take something off a shelf; I can write; I can lift and carry, and the only pain I will feel is if I actually do strain anything unnaturally.

So whether I’m wanting to fill the cats’ dish with kibble, or gather my dirty clothes to take down to the laundry room, or go out to the grocery store for some milk and bread, I need those pain killers. Whether I’m wanting to sit in the shower for fifteen minutes, or dry my hair, or prepare myself a meal, I need those pain killers. For these activities, I don’t need them every time. But I also cannot go without them every time. I need them some of the time, to keep that careful balance so that I am not so overwhelmed with pain that I find myself unable to do those things at all.

You can see how this would extend to work activities. If I want to get myself ready in the morning so that I am presentable and professional; if I want to alphabetize the files and begin to put them away; if I want to walk around to the various places I need to go inside my workplace throughout the day, fetching applications and delivering mail – to do these things, I need the pain killers. And because this work is regular and sustained, I will need them more regularly than I do for the home care tasks mentioned above.

This letter was written after a nasty incident with another doctor in my clinic. She gave me all of twenty seconds to explain why I was there before launching into a very loud diatribe about how I was crazy and ruining my life, and she was going to send me to rehab. (If you want that story, it’s highlighted in blue here. The yellow blocks are the purely-necessary background, since the letter is so long.)

That left me with no option but to go to the emergency room to ask for a Vicodin script. The experience was humiliating. Nurses outside my exam room joked to each other “We should put a sign on the door that says ‘We are all out of Vicodin, go somewhere else.’” The doctor who saw me gave me a long and patronizing lecture, telling me that I should be seeing a pain specialist and not having my primary doctor coordinate my care, guilting me for using the stuff at all, with many dramatic sighs and furrowing of the brow.

Before he gave me my prescription, I asked if he had a recommendation for a pain specialist, and he gave me one. I called them up. They requested that I send over my medical records before they would make an appointment, because the doctor sat down to read them for every new patient so that he could establish a customized treatment plan. I did as they requested and two days later, I got a call. His receptionist told me that they were not going to schedule me an appointment, because the doctor said “There’s nothing else we can really do for you” and said to continue doing what I was already doing with my primary doctor.

In other words, I was doing it right.

This is the kind of regular obstactles that are set in the path of chronic pain patients who use these medications. And it seems like every time we turn around, there’s another restriction.

It is good that they are turning their attention to the dangers inherent in acetaminophen. But there are ways to address this without making life that much harder for another set of people. Am I going to have to take a higher dose of narcotics now because they want to “protect” me from the danger? I don’t particularly want to.

Hat tip to Annaham.

(Cross-posted at Feministe.)

I never fancied myself a photographer, though, as a child. I colored and painted and sketched; I played with ceramics and sculpting clay, with yarns and plastics and pom-poms. All of that Meant Something; it was not what I did, but Who I Was.

And yet I played with photography continually; my mother would buy a roll of film and I’d have it filled within the hour. I loved to pick up my twenty-dollar Wal Mart 35mm camera, to follow the cats around the house taking pictures. It was so satisfying, the snap and rolling noises, removing the film at the end, excitedly filling out the film envelope at the store and waiting patiently for the week we could afford to get the photos developed — then pawing through the stacks of full envelopes, and breaking the seal, the anticipation of what might lie inside…

And yet I never imagined that I could call myself a photographer. All of this, it was not Who I Was. It was just something I did. It didn’t Mean Something.

I don’t know why.

Late in high school, just as my disability was setting in, I took a strong interest in photography. I had been working with the school newspaper, which was feeding my love of visual design, which had been developing since age twelve when I got a computer and started making my own web pages. I was the tech and copy editor(s), so much of the visual presentation of the paper was in my hands. And I loved it.

Photography was something that caught my eye: the art of photography has a strong basis in design concepts, and yet it resulted in something so much more … classic. Free-standing. Boundless.

I saved money, and did research, and between Christmas, my birthday, and graduation gifts in my senior year, I was able to purchase a “prosumer” level digital camera — not an SLR, but offering many more creative controls than your typical snapshot camera.

March of 2004 is when that small black beauty finally sat in my eager hands. That same month is also when I was just beginning to recover from the most severe and serious flare I had experienced, which had me out of school for several weeks that January, then kept from attending school continuously for some time afterward. I was just getting on my feet again that March, just beginning to catch up with everything I had missed until that point, just beginning to collect all of the make-up work I would have to do to get my report card out of the F graveyard… my very last semester of school.

I took comfort in this new little device. It was something to learn which did not weigh down my consciousness, fog up my comprehension. This was not book learning; it was tactile and visual, and it came naturally, guiding the movement of my fingers and positioning of my body to obtain fresh angles, and even the mathematical balancing, shutter speed and f-stop and film speed, was intuitive.

And it cost nothing, once I had the camera. No rolls of film, no waiting for developing. Just space on my hard drive.

My camera would become my best friend as I looked ahead to college, where I was to face multiple health crises and major life changes. Whenever I was not well, I had something to take comfort in, to help me escape from hostile reality.

There is something about photography that exceeds the intellect. Oh, you use your knowledge and intellectual ability to manipulate all the mechanics and mathematics involved. But it is so much different, so far from the problem sheets of school, occupying a different space in the brain, utlizing different mental muscles. It is grounded in that intellect, but it sprouts forth and grows endlessly, obeying no boundaries, becoming whatever you wish to make it be. No intellectual space can hold the zone I enter when I have that camera in hand.

My disability does affect this art. Most so, my hands are shaky, never steady, always moving, and with occasional spasms. I had so much trouble early on, finding it nearly impossible to take pictures requiring a low shutter speed (below 1/30). I couldn’t afford the beautiful machines that handled higher ISOs gracefully, which would have allowed me to play more within this low shutter speed situation. But they were beyond my reach — still are, really.

It has taken me years to learn how to compensate for this. Years and years of failed attempts, frustration, disappointment, self-criticism. And it has come only little by little. And it is not complete.

But there is a physical knowledge there, and my muscles are being trained to hold steady in certain places, certain ways. I have learned to brace against a wall, chair, pole or rail, or even my own body. I have learned tricks: to extend the LCD screen out to the side, so that I can hold the camera at both ends, keeping it safer from unintended movement.

I cannot steady my entire body. It is simply not a trick available to me. But I am learning where to focus my energies, which muscles to use which ways.

And my photos are turning out much crisper, clearer.

This comforts me. When my art is crisp, clean, readable, I feel the same inside. When it is foggy, unfocused, poor quality, I feel the same inside. I feel frustrated at my inability to communicate what is going on inside this complex body to the outside world.

Learning how to do that more effectively… that is a life-long lesson.

A unit of time whose literal length is constantly changing due to rapid miscalculations of a computer wielding an operating system developed by Microsoft (i.e. Windows 95).

My husband had the brilliant idea to apply it to me and my various disabilities: the Manda Minute. To wit, “We’ll be out the door in five minutes!” will probably mean twenty, but it will change constantly as time progresses, and could end up being only eight minutes, or even — thought very rarely — two.

I try to be as honest as I can about time estimates, but there are so many fluctuating considerations and variables that it’s almost impossible to know for sure. I overestimate as it is, but chronic overestimation makes guessing useless anyway — if I say twenty minutes when it’s actually going to be five, what good am I doing anyone? and I’m going to be screwing with the medicine I have to plan out, the periods of activity and rest, and so forth.

Welcome to my life.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?

I was in the midst of an awful whole-body migraine at the time, and ended up taking more painkillers than is technically safe to be able to attend the game. But this is the kind of thing that happens once in a lifetime, and it is one thing I firmly decided when I was a teenager in high school facing the choice between completing assignments or attending this or that social event (Prom and Grad Nite, mainly): there are times where I will sacrifice my physical wellbeing for the sake of participating in something that is important to me. I will not let my disability keep me from doing something fun, just because it is “fun” and therefore not allowed for the chronically ill (who face pressure to never, ever do anything that takes any sort of energy which is in any small way enjoyable to them — because then they are failing in their responsibilities to everyone else in the world, and seen as transgressing the dominant narrative of disability as a tragedy, something to somberly nod to one another about).

This doesn’t mean I abandon all responsibility and throw myself into every trivial thing that comes along. It means that I already have to sit out most events because of my disability, and I already have to put a disproportionate amount of energy into the basics of life, and I can’t let myself fall into that rut of always doing the more Serious and Important thing because that’s what I’m supposed to do, so yes, sometimes, I will say “fuck it,” bear the consequences, and go do that Really Fun Thing I was wanting to do, because I should not be denied participation in these things — sport games, concerts, art festivals, dinners out, parties, etc. — or shamed for daring to participate in them, just because I am disabled.

Anyway, pictures. I managed to get picturesof both Pittsburgh goals, as well as that crazy insane shift at the end of the game where Rob Scuderi stepped in front of the net and did some stand-in goaltending for the waylaid Marc-Andre Fleury. Enjoy.

The entire set

Me with Iceburgh, the Pittsburgh Penguins mascot (as posted previously here):

Inside Mellon Arena just before the game began:

Jordan Staal’s first goal:

Tyler Kennedy’s second goal:

‘nother panorama:

And the sequence of crazy man Rob Scuderi:

WE WON!!!:

The #1 Star, a.k.a. my “boyfriend” Marc-Andre Fleury:

A pano of the arena after most of the fans had gone:

And the laser logos the arena cast onto key buildings in downtown Pittsburgh:

Head over to check out the whole set.

It was a great experience — I love the DC area and I was excited to go back. But five hours in a car makes for stiff muscles, and I was already dealing with some endo flareup. So I was dealing with spasms and pain even with my TENS on (here’s the trick: if you have a big bag, security doesn’t bother patting you down when you enter) and more painkillers than I should have taken.

We had nosebleed seats but whatever, they were seats. It was a great game, even though we lost. It’s hard not to enjoy an NHL playoff game. Especially being able to whisper at each other about the clueless fans behind us who had several amusing misconceptions about how the game is played. (It’s fairly doubtful that the linesmen are biased in calling off-sides. It’s one of the most objective and least arguable calls there is. But “they only ever seem to see ours!”)

Throughout the game, the people behind us kept tapping my shoulder and yelling at me for leaning forward. They “couldn’t see.” Of course, everyone else in the section was leaning forward, and I couldn’t see without doing it too. But most of all, my back was killing me, and doubling over stretches the muscles in a way that helps relieve some pain. (Ask mattw — I sleep in the same damn position.) I tried sitting back for part of the second period but couldn’t last.

After a few times of them tapping me, toward the end of the game, I turned around when they tapped again and stuttered, loudly, wide-eyed and annoyed, “I have a disability — in — back in a lot of pain –”

and they sneered and threw up their hands at me. So I turned back around.

I was steaming inside. I complained to mattw on our way out when the game was over, noting that my TENS was turned up all the way and I’d already taken way too much medicine. And when we reached the bottom of one escalator, the couple behind me tapped my shoulder and the middle-aged bearded guy said, with a smile, “They meant it nicely.”

There are several things going on here. We were wearing Penguins shirts at a Capitals game, and there’s a budding rivalry there. It’s a playoff game, and there’s the whole MVP debate going on (Malkin vs. Ovechkin), so of course it’s contentious. I severely doubt they would have bothered me if I’d been wearing red & blue rather than black & gold. So I understand it. All in good fun, in that respect. A little rivalry can make the sport more fun.

It’s a national sports game, though. At a huge arena. Some people pay attention to the game. Those people might lean left, right, forward, backward, so on. And as long as they aren’t standing up all the time, or wearing a very tall hat or something, that’s accepted, and you work around it. You lean one way or the other to get a better view. People move around as the puck moves around the ice to see better. You move too. And when things are really tense, they probably scoot closer to the edge of their seat and lean forward. So you do the same. And at the very end of the game, people often stand up. Which means you stand up too. IOW, it’s a rather ridiculous thing to complain about, no less multiple times, and angrily (not politely).

Finally, their reaction mattered. When I spilled out why I kept leaning forward, they didn’t do what I expected — look away awkwardly and quiet down as though nothing was ever said. I’m used to that. But instead, they kept gesturing and yelling at me.

That’s what’s so frustrating. It’s not respected at all. Or only respected for so long as it has to be — when you have any reason no matter how trivial to discount that person’s experience or opinion, respect goes out the window. People with disabilities are “protected” in this society only insofar as they are nonthreatening. And that protection is paternalism at its extreme. But that’s a separate issue. When they aren’t subjects of protection, they are objects of harassment.

It isn’t the worst case of harassment I’ve had related to my disabilities, but it bothered me.

Photography is more than a casual hobby for me; it is something I genuinely love to do. And I like to think I do a pretty good job of it. Playing with color, angle, perspective, focus and detail — I feel the same thrill I feel putting brush to canvas. There is something about art that truly does reach into the furthest depths of self. My photography has carried me through several particularly rough times in my life, and added unsurpassable depth and joy to some of the best times. It is also an art I can put to work even when I am not at my physical best. I don’t know that I can express how valuable that is to me. And I can only hope that others find some enjoyment in the work I put out.

Right now the pictures are from two Penguins playoff games last season, with some kitty pictures sprinkled in between. There’s much more to come.

Incidentally, a friend of mine just posted some of his pictures, and he has more patience than I — he’s described each photo, and he manages to be rather funny doing it. It’s worth checking out, seriously.

Having given it a couple test drives by now, I feel pretty comfortable recommending it. It’s extremely comfortable, especially with the sturdy back (I specifically avoided chairs with snap-in plastic backs), which gives a chance to rest not only to my legs but to my core and upper back. And it adjusts pretty damn high, if you want it there (I love it there) — it also stays lower if you are so inclined. All I had to do to “assemble” the chair was to connect the back. (The box was very big, but also very light.) The only problem is the space it takes up; you can’t move around it in a normal sized bath tub (whereas you could at least safely step over my old backless chair), and it doesn’t fold up and hide away, meaning it stays in the bathtub permanently. Sorry, hubby.

I also have to give my good word for Metro Medical, the site from which I ordered. It had the best price on the chair out of sites that had an actual rating on the main price-comparison sites (froogle etc.) and free shipping — which, even with a delay (2-3 business days to order the chair from the manufacturer, as they had none in the warehouse) took all of a week to get here. The site is pretty well-designed (including much more detailed information than most sites will give on a product), has decently wide selection, and checkout was a breeze. All in all, an A+ experience.

And now it’s not nearly so hard on me to take a shower. And I get to have my first purchase with the word “bariatric” in the title. ;)

The store includes neck/shoulder warmers and scarflettes, keypad and wrist rests and drink cozies. The store and item descriptions indicate that they drew inspiration from the needs of their mother(-in-law) who has fibromyalgia.

The items seem, to this trained eye* to be quality-made, and made with the needs of the users close at heart. They aren’t the standard, mass-produced designs. The neck/shoulder warmer looks absolutely perfect for my own needs — moist heat to loosen and relax the tight, tense neck and shoulder muscles, but not too heavy, as the weight only exacerbates the exact problem I’d be trying to correct! And it’s shaped perfectly to cover precisely the area I need, as opposed to the traditional sorts which are simple oblong shapes meant to maybe cover a few-inch-wide area of the neck. And I’d love the wrist rests at work.

Every person’s needs are different, but if yours are similar to mine, this is definitely worth a look around.

The Ferris Wheels

A shot of the current front page

***

For those who aren’t familiar with Etsy, it is a site dedicated to handmade items, where anyone can open up their own shop and start selling. The wonderful thing about it is that the prices are very reasonable, for the most part (it costs about as much to shop at Etsy as at Amazon and other low-price retailers), there’s a much wider range of taste and style available, and almost every seller is open to customization — whether you’d like the same item with that cute little penguin fabric or you want to add a couple pockets there or you need a different size, or… I’ve worked with a range of sellers on Etsy on custom items and they’ve all been excellent, and I’ve been very happy with the products I end up with.

Other etsy sellers worth a perusal (I’ll mark those with whom I have experience):

utilitywear (there will be a post of its own for this one- purchase experience)
florspace (purchase)
umeblossom (custom purchase)
leapinglizards (custom purchase)
danielleloporto (I have had people stop me in the store asking about these wonderful little things – they save me a lot of time and energy and they’re also cute as hell!)
seabreezestudio (custom purchase, VERY easy to work with, quality stuff!)
bagonebagshop
simbiosisbyjulia
jpatpurses
oktak
charmdesign
jennalou06
oladesign
tahirih
lingglass
lobbyloucrafts
cutecumber
borsabella
happykatbags
heatherrlange

Take a look around — the links above are just the stores I’ve stumbled across that fit my personal taste (to varying extents) — there are many more items and styles available.

***

* Over my lifetime I have used so many different assistive items, in these categories and many others, that I can fairly accurately predict the comfort, quality and efficacy of an item for my needs based on its appearance and description (and occasionally on a tactile test, but I’ve found anymore I don’t even need that). Keep in mind that I have not purchased from this seller (yet!) but I feel very safe and confident in recommending the items even without that.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

My doctor is massaging my insurance companies to pay for me a good TENS unit.

I have been using the electrical stim at physical therapy for a little over a month and combined with some simply stretching exercises to help build strength and flexibility, my awful lower back pain is mostly gone. Woohoo!

My therapist sent me home with a loaner unit on Wednesday and I’ve been playing with it ever since. I love it. It takes some trial and error to get it to stick in the right places, but it’s helped quite a bit.

And it’s something I can have on my person at all times — not just at home (hard to keep a gel pack on my back all day) — that interrupts the pain signals, meaning I can reduce my pain killer use correspondingly. The fewer narcotics I take, the better. Especially with that full-time desk job I will be starting in a couple weeks.

But I am a naughty girl. I have been browsing Etsy for a cute and stylish case to carry it on my hip…

***

This is a total gimme. It’s one of the most helpful aids I have, and it’s also one of the most explicit medical devices, so to speak. I’ll get into the subtler stuff as time goes on.

So: my shower chair.

I have touched on the subject of showering in the past, in passing and in detail. Suffice to say it is extremely taxing for me. I usually aim for a shower every 2-3 days, which means I usually end up showering every 3-5 days when I’m in decent health. I try to time it so I shower once on the weekend, when my husband is available if I am having trouble. Usually I will also shower once mid-week just so that I don’t get uncomfortably stinky, greasy, etc.

I don’t always sit during my shower. And I almost never sit the whole time; if I need to sit the whole time, I probably shouldn’t be showering. But it is a huge help, especially when I am washing my body. That requires turning, reaching, bending, twisting, lifting, and balancing, all while pushing a soapy little puff around my body. It’s easier to reach my feet and not fall down when I’m sitting on a stool vs. leaning over standing on one leg. Shaving, too, is something I usually do sitting down, as the bending and twisting is too awkward and stressful for my lower back.

I also scrub certain parts of my feet and hand with a pumice stone to get rid of dead skin cells, because those spots (heel, bottom of my big toe, and around the cuticles on both fingers and toes) get very dry otherwise. This results in two things: feeding my bad habit of picking at my cuticles, and painful callouses on the feet. That’s too much force being exerted to also use up my energy standing up. This is actually the part of my shower that takes the longest, but it’s also best to do it during my shower, when my skin is softened from the warmth and moisture.

OTOH, I usually stand while I wash and condition my hair. Not enough water pressure to rinse it out when I’m sitting, and the less time I’m applying force with my arms lifted high, the better.

I actually don’t know what it is that makes a shower such an event for me. I can pick out some aspects: the heat (though I can’t tolerate extreme heat anymore), the humidity, the enclosed space? I find it hard to breathe in that setting; is my asthma the reason? I do know that actually doing anything while I’m standing is difficult for me, which is why I tend to avoid washing our dishes (unfortunately for mattw) and almost entirely why I didn’t last long at the cafe job. But it feels like that’s not all of it. I get so shaky after a shower, and weak, and shaky. And shaky. And I don’t do great after washing the dishes, but it’s usually not anything like that.

But you know, I don’t always get shaky and week after my showers anymore. And before I bought this chair, I did.

The reason I don’t just sit on the edge of the tub is: ew. OK, the real reason is that it’s still a serious balancing act. (And if it’s anywhere other than home: it might let a lot of water out, and also, ew.)

I got my chair from Target; it was the cheapest one I could find that looked safe and like it would fit our tub.  There are any number of sites that sell these things, and a quick hop on the Google bus should get you where you’re going. This one isn’t particularly portable — it folds down, yes, but it’s not like I was going to carry it on the Metro so I could have it at my hotel in DC. But it allows it to be stowed neatly in the bedroom closet, which means mattw doesn’t have to deal with it when he’s showering on his own, either.

I seriously took a good week to write this post. I feel pathetic. I’m going back to filing now.

Oh. P.S.: Sign up at Target’s website for their weekly ads before you order from them, and if they allow you to just sign in with your Amazon account, do it. I don’t know which of those two things is what did it, but when I ordered, I got a 10% discount.

I was on the T on my way home from a job assessment in Pittsburgh. I’d been shaky all morning, having difficulty breathing, upset tummy, and so on. I wasn’t altogether well.

It was five or so stops from my destination when I decided I had better take a pain killer. I’d popped one when I got to the building, but it wasn’t doing much for me. I couldn’t just wait until I got to my car, because that would be some time, and I had a long drive home and other things to do after that. With fibromyalgia, delaying a pain pill 20 minutes isn’t just a 20 minute delay and then the same relief you’d have if you’d taken it 20 minutes earlier. It means that it will take longer for the pill to kick in when you do take it, and it’s got more pain to kill, and it’s going to be less effective on the whole. Pain builds, so the longer you go without treatment, the worse you are when you get around to it, and the more work it takes to treat it (which makes things worse for you throughout).

So.

I didn’t have a drink. And there wasn’t really any way to get a drink, unless I wanted to waste an hour and a half getting off the next stop, wandering around looking for a restaurant or market, acquiring the drink, making my way back to the stop and waiting for the next trolley. Needless to say that wasn’t going to help my pain state either.

I’ve dry swallowed pills a couple times before. The last time I was fourteen or fifteen, and the memory is vague, but I did it. I mean, it wasn’t pleasant, but it wasn’t bad or anything.

So I pulled my pill case out of my purse. And I started saving up my spit. (Oh, stop gagging, you faker, you’ve done it before.)

My mouth was dry, though — happens from time to time; Sjogren’s, allergies? I don’t know, I’ve never really looked into it. Anyway, you swallow drugs with the spit you’ve got, not the spit you wish you had; I put the pill in my mouth and tried to swallow.

And the spit went down and the pill…. didn’t….

Let me pause to clarify something. This is half a generic Vicodin. It’s fucking huge. And this is no sugar-covered caplet or sweet smooth gelcap. It’s compressed powder with a light seal around the surface. And I don’t know if you’ve ever tasted Vicodin powder, but it’s basically powdered vomit acid.

And it was coating the entire inside of my mouth and throat.

OHGODOHGODOHGOD

I gagged and I heaved and my eyes almost rolled back into my head, I swear it — I spat the soggy pill into my hand and looked at it, trying not to puke. Tears were forming in my eyes. Maybe because I let the spit go down first? I sat there trying to save up more, but I kept swallowing in an attempt to get rid of the awful taste and sawdust texture. (Didn’t work.)

Eventually I held back as much as I could, and I gave it one more go.

And I failed.

I wrapped the pill and stuffed it in my purse and tried to distract myself. It didn’t work.

Of course? The train had to make every. fucking. stop between there and my destination.

It took another twenty or so minutes before I got to my car, and I headed straight to the Wendy’s across the street for a nice long drink. But I was tasting that shit for the rest of the day. At the end of the night when I poured my final glass of water — half to take my bedtime medicine, half to use the next morning for same — I tasted it again.

It’s almost gone now. Almost.

I’m not going to be trying to dry swallow any pills again any time soon.

In the context of disability, what is the first thing you think of when you hear the words “assistive device”?

I’m going to guess it was a cane. Or a wheelchair.

If the first word to your mind was anything other than those two, and you aren’t already a disability activist, do let me know. I’ll give you a virtual cookie.

So, I thought I’d start this series. I don’t have a snappy name for it yet (not for lack of trying; “the crutch list” is about the best I could come up with) but I wanted to start putting these things out there.

It’s been on my mind recently. Lauredhel has been writing about accessibility and challenging my thoughts on the meaning of that word. Similar to the above quick-think test, I’ve got a virtual cookie for anyone who, hearing talk about making something “accessible,” doesn’t immediately think of wheelchair ramps.

Bear with me.

I have what is called an invisible disability; that is, the fact that I am disabled is not readily apparent. There is no reason for any given bystander to think that I am disabled (and isn’t it telling, really, that there has to be compelling evidence for a person to be considered anything other than fully-abled). Further, my particular disability (fibromyalgia) comes with a heaping case of self-doubt, thanks to the social context surrounding it. What that means is that I typically don’t think of “accessibility” as pertaining in any manner to me. Let me reiterate that, to make my point perfectly clear: I don’t feel like access for people with disabilities is applicable to a person with a disability.

I’ve been taught, in so many words, that accommodation for my particular condition is an unfair burden on the rest of the world, so I shouldn’t even bother asking. If it requires a change in the routines and behaviors of “normal” people, it’s untenable. If there is something I want to do, I had damn well better be able to get it done without any assistance, because it’s too much to ask of greater society to make any meaningful changes for my benefit.

In short, I am to sit on the sidelines and watch as life goes by. If the coach has the good spirit to give me a few minutes on the field, from that moment on, I owe my life to him. And after those few minutes have passed, for the rest of my life, I am to suffer in silence, never to ask for any favor again, lest my status as Grateful Crip be swiftly changed to Selfish Bitch.

I never really thought much of my diagnosis (age 12) for those first few years. OK, I had some difficulty in P.E. but I hardly even recognized that for what it was. My body the day before my formal diagnosis was qualitatively no different than my body the day after, and the same can be said of my self-image. For those first twelve years, I had been a “normal” child, which meant that the experiences I had as that child must also have been “normal” too. I’ve written in passing before about the fact that the pain I felt didn’t register as pain, because, again: I was a normal child, so what I felt must have been normal.

Anyway, following from that attitude: even after that diagnosis, the denial I lived in would not allow me to change what I did, or how I did it, as a result of my condition. In my mind, I was still “normal.” So any adaptation would threaten the image I had of myself — after all, “normal” children don’t hold their pen differently, and “normal” children don’t have to stop and rest when walking long distances, and “normal” children can stand for the entire duration of their shower. Therefore, I should be that way, too.

And I think the weight of my disability was more than I could handle at that age. That’s why I couldn’t let myself accept any change in my life as a result of it. If I did, I would have to confront my condition, face to face, and accept it and all of its ramifications. I think I knew instinctively that that burden was too great for me to knowingly carry, and in all the wisdom of a twelve year old, decided to pretend it didn’t exist while carrying it anyway.

And you know what, I hardly even knew that you could adapt your environment to better assist you in living your everyday life. It’s not as though there is a thriving public dialogue about life with a disability and how to get through it more easily. PWD largely live their day-to-day lives shielded from the public, except for the occasional appearance in Hallmark films and other inspirational kitsch. Society, in general, has little to no concept of what disability means to a person’s life.

So. I was thinking about my twelve-year-old self, and my eighteen-year-old self, and what it would have meant to me to know about so many of the techniques and devices I use now, and to really, deep down feel comfortable using these things, because there is nothing wrong with them, and you don’t have to be embarrassed, and you are not deficient, you are not a failure, you can hold on to your pride even as you use these things. It is not a statement of strength to deliberately refuse any aid. And neither is it a statement of weakness! Your use, or not, of such things is not a statement of spirit or character, period. It’s a method. That’s all. It’s a method. It’s a way of doing things. A way of living life. And God knows, if there is anything I learn in life, it will be that there are multitudinous ways of living a life, and no one of them is better than the other. They just are.

Does it say something about you that you put your left shoe on before your right? That you put your seat belt on before you close the car door? Or that you pull your pants up before you flush the toilet? Does it matter, really, whether you cut your pork chop into little pieces all at once before you start to eat or one by one as you’re eating?

It’s a method. It’s not an embarrassment.

With that said, I’m going to start writing about the products, ideas, and tricks I use to keep my roller coaster ride of life just a little bit smoother. If they help me, they’ll probably help someone else. And, in the meantime, maybe “normal” folks will understand a little bit better what it means to live with a disability. (This disability. My disability.)

Consider this, I guess, sort of like the family recipe box. I’m contributing some tried and true mixes. I figure, maybe other folks will add theirs. And maybe there’s a twelve year old out there who will be helped by it. And that would make me very happy.

(Ed. note: I wrote most of this late at night after a failed attempt at falling asleep, and once this is published I am going straight back to bed. I reserve the right to edit for clarity once I’m able to reread it in the morning. Thanks.)

i was conflicted: the content of the job was not impossible to perform, nor was it particularly unobjectionable. (i knew my former coworkers from the CameraShop would comment that i was “better” than food service, but honestly, i don’t see it as beyond me. it’s work that has to be performed, and i do draw enjoyment from being successful in the service of others — that is, making customers happy. that, of course, is not inextricable from the gender roles under which i was raised. but anyway) — the people at Cafe were good people, as were the people in the store in general. and they would face genuine stress were i to quit, and i didn’t want to put them through that (the whole two days i’d known them). and we would face a genuinely difficult financial situation at home if i were no longer drawing pay.

but.

when i stopped and thought about me, purely me, i knew, deep down, i wasn’t going to stay.

when i was scrubbing tables and struggling with turning over a giant floor mat while mopping the eating area, i knew that this was not a job i could perform long-term.

when i was sneaking a bottle of water in the back of the food prep area and trying to time things so i could take my medication without being seen, i knew that this was a job i could not sustain long-term.

when i finally got to steal away for break and sit my tired ass down, and all the throbbing, stabbing, burning pain rushed to my attention, and i despaired that i was going to have to return to work in fifteen minutes when what i needed was a good five days without work to recover just from that pain that i already had, much less the pain i was going to be heaping on top shortly…

when i thought about the nine-and-a-half hour shift i was supposed to perform today, a shift that would have been long for me even at CS, i knew, just intuitively knew, that i couldn’t do it. i just couldn’t.

that intuition, that’s the thing, isn’t it? i remember back in school, from grade two to grade twelve, when i had no idea what the fuck was going on with my body, hell, had no idea anything was going on with my body… i remember just knowing, in that truest sense, in that way that you can question but you can never ignore… i just knew that i couldn’t go that day. i knew i would not be able to withstand my regular activities that day, whatever they were. and, though in  that space i occupied between my own perception and the world’s perception i was doubting myself and slurring myself as a faker, as exaggerating, as sinful and indulging in luxuries nobody else got to indulge in (like sleeping six hours atop the eleven i’d already slept that night, and waking up still  drained and empty), though that was all going on… when i stripped away all those outer considerations, when i was finally left alone, when i could finally stop worrying about everybody else and just think about me, just ME… i knew better.

and that’s the only way to describe it. i know better.

even when i didn’t understand what was wrong with me, what was making me feel this way, what those feelings even were, what my limitations were, what i was facing that i had to do, what i had to do to get by with that…

even when none of that was even something i knew existed — i still damn well knew better.

and years later… that’s how i feel right now.

and now that everyone else is gone, and i’m all alone, and i don’t have to think about anybody else, i know.

and i’m grateful. i can finally close my eyes, relax my tired muscles, and just do nothing.

i can finally appreciate the nothingness.

and how fucked up is that? i finally let go, and what is it i feel? not pleasure or joy. just relief that i can stop, and not keep adding to the pain.

But I also feel smaller. Maybe the Lupron is helping reduce the bloat in the tummy? There is definitely a difference looking in the mirror. Less to squish. Which is rather a surprise considering the previous immutability of my weight.

It is very obvious my GP does not like that I am on the Lupron, not at all. “It’s not like taking an Advil,” he says. That’s not news to me, though. When I told Matthew same, he remarked: “Then what are you supposed to do? At least this is helping reduce the stuff that is causing your pain.” Which is approximately how I feel about it. I know it’s a serious treatment. (GP does think the dizziness and spasms are probably attributable to it, since nothing else came up on x-ray and bloodwork.) But it will be an improvement over the status quo. A lot of the anti-medicine-type folks fail to understand that concept. GP has been reasonable so far, so his views on this matter were somewhat of a surprise.

Halfway through the Lupron, at this point, so long as I don’t have to repeat the therapy at the end. After that first monthish, my symptoms were greatly reduced. Including the dizziness and spasming. They aren’t gone altogether, but they’ve been largely stifled.

He is sending me to physical therapy for the back pain. Welcome development, that. Especially as I am applying around for new jobs, and kind of hoping for a clerical job with the state. I’m in contact with the local vocational rehab services as well. I mean, I sit on my ass all day anyway, but if I am working full time I am going to need some help adjusting to sitting on my ass in a place without access to all the accommodations I have built for myself at home.

I am still adjusting to the idea of working full-time. I’m not totally sure I can do it, but on the other hand, I don’t really have much reason to doubt it either. Especially considering I was unable to sustain any sort of work-for-pay before my current medicine regimen. I am the same person, with the same medical conditions. All that has changed is my treatment.

I don’t think I’ve ever written here about the catch-22 I faced there. Without that treatment, I was disabled, unable to work at all. When I was on disability, I qualified for Medicare, which would pay for that treatment. But with that treatment, I was (tentatively) able to earn SGA. Which would disqualify me from those disability payments. Which would mean I’d lose my Medicare. Which would mean I no longer had the treatment that enabled me to work.

Fortunately they do actually continue at least Medicaid coverage for workers with disabilities, at least in Pennsylvania, but only temporarily. After that, you’re at the mercy of your employer.

The fight for universal health care is, then, quite intimate for me.

Over and out.