Image of a hospital waiting room; photo by Danielle Blumenthal. Used under a Creative Commons (CC) license. https://flic.kr/p/nNYegP

Waiting

Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.

I am grinding my teeth.

I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.

I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.

I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.

The overarching issue–as has been driven into my skull over and over again as I search for a treatment for whatever it is I have–is that as a culture, we expect doctors and medical science as a whole to be our saviors. We expect them to automatically know what’s wrong with us, and to make it go away. We expect them to make sense of maladies that often do not make sense, and quickly. No one has told me that figuring out an illness can be a long and complicated process. So I expect that someone—at the very least an expert such as this doctor I am about to see—will have at least some answers as to why I’ve been feeling like death-warmed-over for the past five months.The only thing I can do at this moment, however, is focus on how much I dislike this waiting room.

The room is nearly colorless, but flooded with fluorescent light. The light makes the carpet the color of vomit, and the cheap, plastered wall like rapidly expiring cottage cheese. Magazines are scattered on plywood tables: Parents, Child, AARP, Yacht Digest Monthly. None of these apply to my immediate situation, and to take a cursory browse through any of them would make me even more impatient and angry. I would gladly kill for a copy of U.S. News and World Report right now–anything that could take my mind off of my pain for even a minute would be a blessing.

I gingerly remove my iPod from my backpack, snap the headphones over my ears, then press play. The opening notes of Tori Amos’ “Happy Phantom” fill my ears, and for a brief moment, I am pleased.

The song’s bizarre imagery of Tori running naked and chasing strict nuns around, however, is quickly interrupted as the office’s phone roars to life. The middle-aged blonde receptionist with a hideous floral shirt and long red fingernails picks up the phone. In a voice louder than I had anticipated, she chirps, “Clinic, this is Anna, how may I help you?” Not only does this woman share my name, she has a voice like Marcia Brady on steroids with a megaphone. I know that no matter how loudly I turn my music up, I will not be able to avoid hearing her. Sighing slightly, I dump my iPod back into the dismal abyss of my backpack.

After sitting hunched in my chair for what seems like an eternity and a half, another blonde woman in a hideous shirt emerges from the mysterious door leading to the back that has until now remained closed. She holds a clipboard in one hand, a pen in the other.

“Ms. Hamilton?” she says. I nod briefly, smile politely, and get up, shuffling out of the waiting room.

The doctor, a short, stocky man with thinning black hair and no-rim eyeglasses, sweeps into the office that I have been shown to, all business. He eyes me carefully before sticking out his hand.

“Hello, I’m Dr. West.”

“Hi,” I say quietly.

He peers down at my gigantic file, readjusting his glasses with an aging, veiny hand. I assume that my primary care providers must have faxed him a complete set of my medical records, although I suspect that a “complete set” may actually require a sturdy hand truck and a cardboard box to cart around.

“So, what seems to be the problem?” he says, looking at my file.

“I’ve been having really bad joint pain for a couple of months, and I’m tired all of the time. My energy level is really low, and it’s difficult for me to get out of bed some days. I just feel kind of. . .dead.”

He nods, still staring at my chart. He does not make any eye contact. “Anything else I should know?”

“Well, uh, I’m a vegetarian and I usually eat pretty healthy foods, I was born prematurely and have a mild case of Cerebral Palsy—the actual term for it is Left Hemiplegia. If you need any records on that or anything, I can call my former physical therapist and she’ll fax them to you—“

“None of that matters. You can stop.”

“But–”

“What I can tell you so far is that your symptoms aren’t consistent with a textbook definition of any type of rheumatological issue. They just aren’t consistent. I can’t give you a diagnosis at this time.”

This is the guy I have been waiting a full three months to see. By this time, I have had multiple blood and urine tests, many speculations by different doctors, and more accidental “sick days” off from school than I can keep track of. Plus there’s the pain and fatigue–all day, every day. I have been waiting, rather impatiently, for answers, and now that they are supposed to be here, they are not. I want to scream at him: I cannot continue to live like this. I’m not a fucking case study in a med school textbook. I’m in pain.

I don’t yell at him. If there’s one thing that a lifetime of dealing with weird health problems (including Cerebral Palsy, life-threatening allergic reactions, and depression) has taught me, it’s that I have to be polite and patient to get anywhere with medical professionals.

I stare into space as the doctor drones on and on. He mentions something about a TB test. “Okay,” I say. Okay. Okay. Okay.

“I’m going to start you on some steroids. These may make you feel better, or they may make you feel worse.”

“Okay.” Since I’ve been on steroids for my anaphylactic allergic reactions before, and have been surprised every time at how they completely drain my energy and tiny reserve of zest for life, this does not sound like a promising treatment plan.

The doctor leaves, and another nurse leads me to a tiny, closet-like room with barely enough space for a scale, a cabinet, and a blood pressure machine attached to the wall. I sit down in the room’s only chair, staring at the door as the nurse takes a needle from the cabinet’s top drawer and unsheathes it. She grins at me, slightly frizzy hair forming a halo around her wide face.

“I’m just going to make a little bubble under your skin,” she says. I automatically offer my right forearm. The needle goes in. The nurse’s expression changes.

“Oh, you know, I forgot to put the fluid in! Silly me,” she says, and giggles a bit.

This does not strike me as especially amusing.

“That’s okay,” I bleat automatically. The needle is filled with the requisite fluid. I offer my forearm again, like the next cow at the slaughterhouse who moseys up the conveyor, unaware of the gruesome fates of those who went before her. The needle slides in again.

The fluid-skin bubble forms. The nurse smiles apologetically. I begin to sob.

The doctor pops out of the corner, sticking his head into the doorframe.

“Is everything okay?” he asks in a monotone.

“Oh, she’s fine. She’s just scared of needles,” the nurse says, with more pep than is necessary. The doctor utters a short grunt and continues down the hall.

I shake my head as the nurse looks at me sympathetically. “He’s very good at what he does,” she intones.

I don’t want to hear any more from her. If this “expert” can’t figure out why my body has turned against me, who will? Five months of feeling completely deflated has been enough, and at times has felt like more than I can handle. I realize that finding out what is wrong with me will be a long and arduous process, but from my vantage point here in the doctor’s office, crouched and upset, it seems like this will go on forever.

Panel 3 Top text: The few inroads that a specifically feminist theory of disability has made have also tended to be advanced by white folks, without much consideration of race. Image: Annaham looks at a pile of books: The Rejected Body by Susan Wendell, Illness as Metaphor by Susan Sontag, Feminism & Disability by Barbara Hillyer, Crip Theory by Robert McRuer, and Extraordinary Bodies by Rosemarie Garland-Thomson. Panel 4 Top text: As Karen DePauw puts it, “[women scholars with disabilities] have explored issues facing (mostly white) females with disabilities and have begun to examine the complexity of difference as a result of the confluence of being female and having a disability.” Image: A mashup of the feminist “woman” symbol and the classic symbol for people with disabilities. Bottom text: DePauw, “Space, the Final Frontier…,” 21.

Drawing Out Whiteness and Disability: Part 4

Previous installments: 1, 2, and 3.

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Click “Read More” to read part 4 of this comic series; click the images to fully enlarge.

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A fat woman in black and white, ruminating.

Not Your Good Fatty: HAES and Disability

Health at every size is a concept embraced by some fat and size acceptance activists. For those not familiar with it, it was popularised by Linda Bacon, and simply put, it suggests that there’s a wide variation of bodies and that people should focus on what makes their bodies healthy, rather than on eating and exercising for weight control. There are a number of components of health at every size, including ‘intuitive eating’ and the concept of ‘joyful movement.’

When I initially heard about HAES back in my nascent days of exploring fat, size, and my relationship with my own body, I was excited about it. I’d been reading a lot of stories about the false beliefs about fat and health, and I liked the idea of a movement specifically reinforcing the idea that being fat doesn’t make you unhealthy, since one of the most common charges levied against us fat folks is that we are unhealthy because we are fat, that fat makes people unhealthy.

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Top text: Unfortunately, the “bootstraps” model of health care and being able to pay for that care has taken root in some Western societies, especially in the U.S.—where “Screw everyone else, I’ve got mine/my needs taken care of!” is something of an ideological stance, especially among conservatives. Image: Several different people object to a different model of health care. Speech bubbles: SOCIALISM! Obama-Care! MY tax dollars going to help poor people? NO! They just need to WORK HARDER to be able to afford insurance! If you’re mad about pre-existing conditions, just don’t get sick! Maybe some of these people without insurance could focus on staying healthy and taking care of themselves, without relying on big government.

Drawing Out Whiteness and Disability: Part 3

Previous installments: part 1; part 2.

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Click “Read More” to read part 3 of this comic series; click the images to fully enlarge.

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Two images. Top text: I am also oppressed, therefore… Image: Image of a white feminist looking perturbed and defensive. Speech bubble: But I’m a feminist! I can’t possibly be racist! ; Top text: Naïve, with a side of STFU. Image: Two people—one a fat white woman with curly hair, and a thin white man with a goatee—stand side by side, looking angry. Speech bubbles: But we’re POST-RACIAL, since the U.S. elected a BLACK PRESIDENT! Stop complaining.

Drawing Out Whiteness and Disability: Part 2

Previously: Part 1.

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Click “Read More” to read part 2 of this comic series; click the images to fully enlarge.

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Image of author Melody Moezzi standing in front of a grafittied wall; image via http://www.penguinspeakersbureau.com/speakers/page/melody_moezzi

“We cannot talk about mental health without talking about prisons”: A Conversation with Melody Moezzi

Human rights activist, attorney, writer, Iranian American, and Muslim American feminist: Melody Moezzi is all of these. She is the award-winning author of War on Error: Real Stories of American Muslims and published her memoir Haldol and Hyacinths: A Bipolar Life last September. She also blogs for the Huffington Post, Ms., and BP Magazine and has provided commentary for CNN, NPR, and BBC, among others. Her memoir is a frank account of her journey with bipolar disorder, her times in and out of mental health care facilities, as well as her life as an Iranian-American woman in Middle America and the South. Written with grace and often hilarious, Moezzi’s book fills a gap in mental illness memoirs, in that is told from her perspective as a Muslim American feminist activist and attorney.

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Image of a snake eating its own tail; via http://theunrecordedman.files.wordpress.com/2013/10/snake-eats-own-tail.jpg

Misunderstanding the Mind/Body Connection

Many people with chronic health conditions, chronic pain, and/or mental health conditions are well aware that the mind can influence how the body feels on both acute and more long-term levels. A Google search for “chronic pain and depression” brings up around 42 million results; it’s not surprising that mental health concerns are a problem when it comes to chronic physical health problems, whether mental health issues precede chronic illness or spring up long after a person has been dealing with chronic pain and illness. In many cases, mental health issues and chronic illness/pain affect each other, but for those who have both, it’s not so much a chicken-or-egg problem of “which came first?” rather than trying to deal with and manage each issue on an ongoing basis.

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A young person receiving a vaccine from an adult.

Arguing About Vaccines While Rome Burns

The United States is deep in the throes of measles outbreaks on two coasts, in the Bay Area and New York City, with isolated patches of the disease elsewhere. This fully vaccine-preventable illness, which was officially ‘eliminated’ from the US, is experiencing a renaissance for one simple reason: people aren’t vaccinating their children, and they aren’t getting their adult boosters to ensure continued immunity throughout life.

It seems absurd, given that measles can be fatal and it can cause long-term neurological impairments in patients who recover from the infection. This applies not just to children, but also immunocompromised adults who can’t get vaccinated; people who are HIV+ or have autoimmune disorders are at serious risk if they get infected with measles. When an easy preventative step is available to address an illness with potentially serious consequences and people aren’t taking advantage of it, one is, quite reasonably, led to ask: why?

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Photo of the author with a book featuring a black and white image of a Heaven's Gate member post-mass suicide. Photo by Anna Hamilton.

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

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

–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)

I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds,  on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.

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UC Berkeley's Sather Gate, a metal gate arching over Sproul Plaza.

When Education is a Privilege, Not a Right

In the United States, the government promises free universal access to education through high school (grade 12), providing funding to a vast network of public schools across the nation. The education system in practice is a deeply flawed, troubled institution, one rife with discrimination, inequality, and gross imbalances; children of colour going to school in a facility with clogged toilets and peeling walls while their wealthy counterparts enjoy an airy, leafy campus with impeccable facilities and the best, most modern technology, for example.

But on the surface, education in the United States is supposed to be a fundamental right, something accessible to all children. In fact, the country so aggressively pursues it that to not go to school is to find yourself meeting the truancy officer; if you don’t go to public school or who have parents with the power to pay for private education, you must be homeschooled with a curriculum approved by the state. In other words, this is more of an enforced right, as it were, at least for some students; again, inequality shows here when it comes to which students are closely watched and encouraged to stay in school.

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Disability, through an intersectional lens