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My Leaky Body

Table of Contents

  1. Part One - The Stretcher
    1. Snap!
    2. Bed-Blocker
    3. Mountains, Trees...
    4. ...Bowel Disease
    5. Things Fall Apart
    6. Humble Resistance
    7. Pinko in Paris
    8. Dr. Cartoon
    9. Leaky Hospitals
    10. Welcome Back Tommy
  2. Part Two - The Table
    1. An Education in Julie
    2. Home
    3. Me and Charles Darwin
    4. Remember This Scene
    5. Civil War
    6. New Year’s is for Chumps
    7. Into Battle...Again
    8. Conspiracy
    9. Now I Know How Joan of Arc Felt
    10. A United Underworld of Anti-Julieness
  3. Part Three - The Theatre
    1. Casualty
    2. Suprise!
    3. Wedding Feast (also, Fairies!)
    4. Bionic Woman
    5. Pilgrimage to Frida
    6. Trillium Welfare Queen
    7. Willow the Brat Cat
    8. Basta! Basta! Basta!
    9. The Grand Cutting
    10. The Shower Scene
    11. Naked Onstage
    12. Cheshire Cat Resident
    13. Without Hope
    14. Reformed
    15. Big Mouth
  4. Part Four - The Recovery Room
    1. Back to Oz
    2. System Failure
    3. Home...Again
    4. New York in the Spring
    5. Dawn Escape
    6. Closure
    7. Alight
    8. Am I Zero Yet?
    9. The First Time We Meet
    10. Miracles
    11. “Owww!”
  5. Part Five - Back to the Table
    1. Leaky Bodies
    2. Ashes & Crows
    3. Because Bums Are Funny
    4. Manners for Med Students
    5. She Gives Good Scope
    6. But We Tried to Help You
    7. Trail-Blazing Warrior Angels
    8. Prairie Love
    9. Big Bang
    10. Time
    11. Writing the Ending
  6. Acknowledgements

1. Snap!

It occurs to me that the manufacturers of latex gloves should do something about that haunting elastic sound that happens when rubber meets flesh. The warning shot.

The Vancouver emergency room doctor is exhausted, worn to shreds. He looks at me, feels my abdomen, and says, “Your tummy is soft. What do you want me to do?”

I am strung too high on pain, undernourishment, and fear to edit the scathing tone of the words that flood out.

“Well, I’m in a great deal of pain. I’ve had twelve bloody bowel movements in the last sixteen hours. I came here because I thought you might know what to do.” I unflinchingly look him clean in the eye.

“Fine.” He barely suppresses an eye roll. “I’ll order you some Demerol and Gravol and call the GI guys.”

As he rushes off, I imagine the animated soldiers from G.I. Joe marching onto the ward. GI guys? I rack the acronym database in my brain. Gastrointestinal guys. Men who presumably have some opinion about my bleeding bowels.

After the doctor leaves, my partner, Blair, and I have The Talk. He puts his hand on my arm tentatively and says, “It’s not fair, but you can’t talk to them like that. I know how much pain you’re in and how angry and upset you are, but you seem way too calm; you sound like you’re giving them a lecture. You actually have to show them your pain so they believe you. And you really shouldn’t have to do this, but you have to make them feel like they know more than you. They can’t handle the way you speak to them; you have to let them think that you think that they’re in charge. Because, unfortunately, they are.”

I practise dramatic demonstrations of pain with mock tones of weakness and deference. “Doctor, I feel so sick. Oh, please, doctor, please, please, I’m just a little girl, please bestow your wisdom on me . . .”

I’m so used to toughing out pain and so afraid to show any kind of emotion or raw anger to professionals that my practice attempts are completely over the top. We laugh, and then fall asleep on the stretcher. Blair, who later denies having fallen asleep, is snoring when the nurse comes by. She and I make conversation about the fact that we live near each other and talk about our dogs.

Finally, I work up my nerve and ask her, “The way the doctor spoke to me, I really felt like he thought . . . he thought I wasn’t sick enough to be here, that I shouldn’t have come. Do you think I shouldn’t be here?”

I brace myself, waiting for her to agree with him and give me a lecture about wasting hospital resources.

She leans in and says clearly and seriously, “I just tested your urine. You’re metabolizing protein. That’s dangerous; you were right to come in. We’re just having a really bad night. It’s not about you.”

And I understand what she means, that it’s not about me. I’m a health care activist who’s supposed to be speaking on a panel with the president of the hospital employees union the next day, so I know how bad their working conditions have become with the massive cuts to health care. But when politics are being meted out on my body, it is about me.

She leaves, and I doze off, enjoying the physical relief provided by the meds. I’m jolted awake by a shouting match between a very angry man and a very scared woman.

“Now come with me, Mary. We know there’s nothing wrong with you. Come on!”

Mary stumbles backwards through my curtain, into my bed, narrowly missing the IV pole attached to the inside of my forearm. A security guard grabs her and smiles at me.

“Sorry about that. She gets a bit worked up.”

I can’t help thinking that if she felt unwell enough to come, whatever her issue, she needs support of some kind. Perhaps if the hospital had more humane support staff, they wouldn’t need so much security to confront and fight with people.

The security guard drags her away, and I have no idea what happens next. One of the most traumatic things about lying on the stretcher is getting to witness only a single scene in someone else’s life drama, played entirely out of context with no satisfying resolution. I worry and wonder whether Mary will find a room and be admitted into some other sanctuary.

Finally the GI resident shows up. He’s nice and tells me that I’ll probably get admitted. And even though it’s not until he finds out that I’m a graduate student that he actually makes eye contact, at least we have a conversation. He quickly stops talking and stands at attention when his superior, the bowel specialist, arrives. The specialist is gentle and respectful. He tells me quite bluntly that the hospital is full, so he wants to send me home on a higher dose of my medication and then see me at his office in a week.

In the meantime, he says, “Make sure you eat . . .”

As if I simply decided to abstain from all nourishment. Although it seems “counterintuitive,” the resident chimes in, I should make sure to eat fibre and vegetables because they’ll bulk up my stool, and the nutrients will help me get well.

The specialist chides, “You’ll just get sicker if you don’t eat . . .” and rushes off, leaving his resident to write up the orders to discharge me. We continue chatting, and I find myself feeling incredibly invested in making him understand what I’m going through — partly because we’re so close in age and partly because he’s explicitly there to learn, and I want to teach.

“You know,” I tell him, “all my flare-ups seem to start either just before or during my period. I think it’s really interesting how hormones and autoimmunity are so interrelated.”

He nods dismissively and starts to walk out. Then he turns back suddenly, his head peering back around the door frame, looking as if he’s just had a revelation.

“Are you sure the blood in your stool isn’t just menstrual blood?”

I sigh deeply. “Yes, I’m sure. There is a difference.”

It’s a question I can’t imagine a woman asking. I’m frustrated that this condescending question is his only response to my attempt to share a bit of my bodily experience. I thought I might have at least provoked an interesting follow-up question and possibly even a conversation. I roll over and stare at the grey wall, smelling the faint remnants of bleach on my pillowcase. I feel isolated and stuck, a whirlpool of fear brewing in my belly. I’m putting all my trust in these men to pull me out of this pain and uncertainty, and they don’t even want to talk to me.

Blair was outside during this exchange, phoning home to let our roommates, Maia and Colin, know why we’re not there. Maia is my best friend from high school and Colin is her partner, and also an old friend from my teenaged years. They hurry to the hospital in their van to pick us up, a little upset that we didn’t wake them for a ride in the night. But I just can’t stand too many people seeing me in so much pain.

We go home and I take the nutritional advice. I have a very small bowl of rice, chicken, and vegetables. Within half an hour, I’m back in the washroom in intense pain. As the food violently hits the toilet bowl, I am reminded with absolute certainty that my nutrient malabsorption was not caused by a “refusal” to eat.

I understand now that, despite the nurse’s opinion, to get admitted into hospital, you need to have either a high fever, a distended abdomen, or uncontrollable vomiting. If only I’d read the “Getting Admitted” handbook. The doctors wouldn’t have sent me home for another week so that my joints are so swollen I can only crawl to the bathroom fifteen times a day in searing pain, trying to force down Ensure at Blair’s insistence as he watches me wither away, my hair falling out from malnutrition — covering my pillows and coming out in chunks in my hands.

I phone the gastroenterologist who sent me home from the hospital. His only insight is, “Really, colitis shouldn’t be causing you this much pain.” The week is unbearable. The world looks terrifying and bleak to me from my bed. I want to feel better, but I just can’t see any end in sight. I question every decision I have ever made: deciding to move to Vancouver, choosing to stay for the summer, whether I really should move back to Toronto as I have now planned to do, whether I should be taking the medications they prescribe, and whether not taking medications will make me ineligible for more medical treatment when I need it. I question what I eat when I do eat and whether I should be eating when I don’t. I am profoundly lonely but have no idea how to emotionally connect with anyone because I’m so busy beating myself up for being in this situation. Some part of me believes that I should know how to fix this. I have never been so vulnerable, so dependent on other people to do everything for me, including carrying me downstairs because I can’t walk. I secretly hate everyone for being well and walking around and eating and continuing with their lives.

The following Saturday, we reach a crisis point. My joint pain has become unbearable and my spasming gut causes me to throw up my meds. Maia and Colin drive us back to the same ER, and Blair brings a wheelchair to the van. As he wheels me in, I make a mental note to add this to the patient handbook that I am now planning to write: Being wheeled in gives you credibility — you may be awarded a gurney in the hall. Frighteningly low blood pressure and vomit also contribute to the speed with which you can expect attention.

A doctor comes to see me in the waiting room and sits down next to me.

“I’m so sorry that there’s nowhere else to talk to you.”

She looks at my chart.

“I have a cousin with ulcerative colitis. It’s a terrible disease. Oh, look at your joints, and your skin. This is a really serious flare-up; you need to be admitted.”

At this point, I am so dehydrated that finding a vein to start my IV proves challenging. They send a burly male nurse who seems very angry at my uncooperative body as he pokes and stabs around and through my inflamed hands, ankles, wrists, and feet.

“My feet are swollen,” I tell Nurse Stab. Then I calmly advise him, “I have colitis, I’m going to need to walk so I can get to the washroom,” as he digs around the inside of my swollen ankle with what feels like a knitting-sized IV needle.

He grunts dismissively as he dabs away the blood that is leaking from his unsuccessful attempts. As he appears more and more furious with my veins’ resistance to his attempted invasions, Blair gets increasingly agitated.

I am infuriated and terrified — but also scared that if I reveal my emotions to any of the health care professionals, my situation might get worse. And I need them. So I don’t even point out that since I was on IV a week earlier, if they had treated me then instead of sending me home, we wouldn’t be in this mess. I burrow very deeply into my brain to escape the pain and raging emotions. Here I begin the internal debate that continues in every hospitalization for the next five years: my intellect rationalizes that the state of the hospital system isn’t the nurse’s fault, and my heart rages back that it certainly isn’t mine and I’m the one being ravaged by a sharp pointy object.

Nurse Stab finally gives up and rushes off to find the specialized IV nurses. Blair calls after him, “Did you learn to do that on TV?”

I’m surprised and impressed with Blair’s outburst; it’s so unusual for him to be so overtly rude. It doesn’t actually occur to me to be angry; I’m too busy bracing myself for the next battle. I also honestly believe that this moment is worse for Blair than it is for me. It’s so clearly horrifying to watch, but actually physically a million times more tolerable than a week of bowel agony. Blair’s jaw is clenched, and his eyes are still focused on the nurse in the distance. He turns to me and affects his best tough-jock voice.

“The hospital would be such a great place to work if all those pesky sick people would stop coming here.”

I giggle and squeeze his hand.

“Honestly, I’m okay. It’s just blood.”

The IV team arrives, ready to put a central IV line into my neck. One nurse approaches me while her colleagues are busying themselves preparing needles, saline bags, tubes. And, here, I first become aware of a secret skill I possess, one that will stand me in good stead for the following years of illness: I can spot someone who will find a vein on his or her first try at fifty paces. This nurse is practically glowing. I immediately feel relieved. She’s petite and looks calm and assured. I look up at her.

“I don’t want an IV in my neck. Can you please check my arms again?”

“Sure, of course, okay . . .”

She gently feels my arms and finally settles on a vein deep on the inside of my elbow, successfully starting the IV on her first try. They start me on fluids and intravenous steroids that will ultimately reduce the inflammation in my bowel and my joints. I am now lying on the gurney, IV poles at my side, pushed up against the wall of a hallway adjacent to the waiting room. The nurses repeatedly apologize as they rush by.

“Everyone’s talking about you in the nurses’ station; we’re all trying to figure out where else to put you. We feel awful.”

I can’t have any pain medication because the specialist is concerned that it will slow my bowel down and cause a blockage. So now I am not even eligible for the oblivion I had enjoyed, however briefly, in my previous ER experiences. And here the worst part begins, the lowest drama, the highest torment — the waiting.

The highlight is the doctor who brings his class of medical students crowding around me, half-naked and curled up on the gurney.

“Do you mind showing us your erythema nodosum?”

The swollen purple and red bumps that are covering my legs and elbows are fascinating to the medical students. I excel at the development of extra-intestinal side effects, which also include the arthritis now plaguing my peripheral joints. But I think what fascinates and amuses them even more is my ability to pronounce Latin and articulate the features of my illness.

I point proudly to my joints, feeling a bit like Vanna White.

“In addition to the erythema nodosum you see here” — I wave my hand toward the swollen bits of painful flesh surfacing above my skin — “I also have very limited mobility due to a serious flare of peripheral arthritis.” Smiling warmly at my audience, I direct their attention toward my legs stiffly stretched out in front of me.

They look at one another with such pleasure I imagine the doctor announcing authoritatively, “Exhibit A speaks Latin.”

They move along, and I realize that they are just as much a source of entertainment and distraction for me as I am an object of education for them. (When I first report this incident to friends, I sarcastically describe it as the “highlight” of the visit. But now I realize it truly is a welcome break from the medical monotony — my opportunity to perform for the youthful, aspiring doctors surrounding me.)

I’m bored and uncomfortable and trying so desperately hard to distract myself from the terror brewing within me. Blair brings me magazines and we attempt conversation, but it’s really difficult. I’m so jammed up with fear and rage that I need to hold on tightly to my semblance of control. I am afraid that genuine human interaction will completely unravel me. It’s one thing making small talk to strangers, but having a real conversation is impossible. Blair is exhausted and terrified but unwilling to admit either of these things, and so we sit in silence. It’s approaching nightfall when they finally move me from the actual hallway to a part of the emergency ward that just feels like a giant hallway. Rows upon rows of patients lined up like wilting, limp plants waiting to be watered. I send Blair home, telling him to get some sleep, and then I am alone. A young woman with hepatitis B is across the hall from me. Her whole family is crowded around her, crying.

I mechanically lift my arm up, so a nurse can check my pulse and open my mouth so she can check my temperature.

“Do you have any idea when I might be getting a bed in a room?” I ask her when she’s finished.

She looks down sympathetically. “Some people have been down here for five days. The problem is that although there are beds upstairs, there isn’t enough staff to take care of seriously ill patients, so you have to stay in emerg with us so we can monitor you.”

I find this deeply ironic. A week ago, I was sent home because I wasn’t sick enough to be admitted to hell, and now I am too sick to get a bed and I’m stuck in hospital purgatory. I finally fall asleep. I wake up to my stretcher being moved at about two in the morning. They need my rectangle of space for someone else. I am moved into a storage space in the part of the emergency ward where people are admitted for psychiatric treatment. Restraining devices, needles, and tubing are stored on shelves all around me. The washroom is a good trek around corners and through doors. It consists of two stalls to share with the entire emergency room: patients and visitors. Not exactly ideal for a colitis patient who has frequent and urgent diarrhea.

My closet-stall is a constant bustle of activity as new patients arrive and nurses come to get more restraining devices. I decide that if I’m stuck here anyway, I might as well be entertaining. So the nurses often end up in my closet, chatting with me.

“Wow, you have colitis. That’s really shitty.”

I look up at the friendly male nurse with one eyebrow raised. I emphatically deadpan, “Yes, yes it is.”

Immediately realizing the terrible pun, he apologizes profusely, and we both laugh.

“It’s such a weird disease,” he says. “Two of my friends have it. One has gone into remission and he practically lives on pizza and beer, with no flare-ups. Another does everything she’s supposed to, eats well, is compliant with all her medications, and she’s still getting symptoms. I have to give her iron injections because she’s so anemic.”

It’s the best insight into autoimmunity any health care professional has given me so far. Unpredictable, different for everyone, and no one understands why. Another nurse joins us, and we realize that we recognize each other from a health care protest across the street six months earlier. This definitely scores me points. I get extra attention from the staff, who now treat me fully as their equal, and are open and honest about the state of the ward. The overcrowding has apparently been getting steadily worse, with no end in sight. They leave their cordless phone in my closet so I can use it whenever I want to.

My friend Martine from Toronto happens to be in town, so she comes to visit, spending an entire hour looking for my closet. Blair spends a lot of time in the closet with me, and my roommates come back to see me too. The steroid treatment coursing through my body intravenously is finally working, easing the pain of my joints and abdomen.

During my second day in the closet, I manage to read my chart, which is still sitting at the foot of my stretcher after they bring me back from some tests. I feel like I am in grade three, surreptitiously trying to read my report card through the sealed envelope before I get home to deliver it to my mum.

“Looks extremely ill. Friendly, seems in good spirits. Very pleasant but still feeling very sick . . .”

This moment provides my first insight into just how vulnerable patients are to subjective commentary that any professional can write in their chart. I get top marks for hygiene, which is exciting. My friend Ethan, who is in med school, tells me that this hospital is known in Vancouver as being the “downtown” hospital, reputedly packed out with homeless people with drug addictions. The hygiene checklist is a code: She’s clean. Not one of “them.”

This evidence of exactly how patients are being monitored keeps me constantly second-guessing myself about how I might be appearing to health care professionals. At the same time, I spend most of my days drifting off in a combination of discomfort and boredom, staring at the ceiling for what seems to be interminable amounts of time. During one of these moments, I notice myself chanting under my breath. Some people get songs stuck in their heads. I get political chants from demonstrations. This time it was one from the G8 demos in Calgary a month earlier.

“Suharto, Bin Laden, and Pinochet — all created by the CIA!”

It occurs to me that if anyone hears me muttering the names of foreign dictators and accusing the CIA of things while lying on a gurney, my status might be advanced from temporary closet-tenant of the mental health unit to committed patient. As I look at the restraints on shelves all around me, I have a sense of how very thin that line might be.

I’m thinking about this as a flood of light descends from the ceiling. I blink several times, trying to clear my eyes of the black and purple spots now floating in my field of vision. They don’t go away. In fact, they start to congeal, into a sort of blob. And this blob starts to take form. First I see neatly coiffed hair and glasses. I start to make out lapels on a suit jacket and a little tie — definitely 1940s style. I’m very confused as the voice rings out.

“What on earth is going on here?”

“Uh, I’m sick.”

“Well, I can see that, but what are you doing in the closet?”

“There’s nowhere else for me.”

“Good grief! What’s been going on? Did the doctors go on strike? Are we back to private medicine? Are you too poor to pay?”

“Are you Tommy Douglas? Seriously, as in the father of Canadian medicare? Kiefer Sutherland’s grandfather? Seriously?”

He outstretches what appears to be a wing and impatiently replies, “Yes. Right, right then, okay, climb on.”

“Oh, my God. Is that a wing? Really? Where are we going?”

As I scramble onto his back, he replies, “To the fully funded facility of both of our dreams . . .”

As we bust through the ceiling of the closet, through crumbling plaster and shiny, peeling, institutional paint, we ascend from beige imprisonment into bright splashes of pinks and blues and greens. I breathe deeply, taking it all in. But even in this fantastical dream-state of pleasure and safety, my brain just won’t stop.

“Nice . . . so what are we going to do, Tommy? We need to march on Parliament and demand that they stop privatizing health care! How did it really go down when you did it, and what now? And, wow, so Tommy, are you, like, an angel now? So when you met God, was she a socialist?”

“You ask way too many questions.”

I fall with a thud back onto the starched sheets of my stretcher.

“That’s what you get for rescuing a grad student!” I shout uselessly at the ceiling.

2. Bed-Blocker

Two years, three months, four days, five hours, twenty-six minutes, and fifty-four seconds later, I am in a lecture hall. A professor is standing at the front of the class as rows of students behind me take notes. He’s talking about the problems that “chronic care” patients create in emergency wards. The idea is that “emergency” should be reserved for emergencies: acute care situations like car crash traumas and heart attacks — not people with chronic, ongoing health conditions coming in for treatment. He chuckles slightly and leans in, as if confiding in the class.

“Doctors refer to these patients as bed-blockers because they really shouldn’t be there.” He snorts appreciatively.

The room starts spinning. I wonder if I’m actually going to start vomiting. And I picture projectile barf chunks flying out of my mouth, sailing over the fifteen feet separating the professor from me, and showering him with my bed-blocking vomit.

Instead I lean over and say to the other teaching assistant, “Um, I need to, like, take a walk or something.”

So I step out into the cold, grey day and breathe deeply, mentally listing all the possible emotions I might be feeling to create this massive physical response. I stop at anger. I’m furious. People don’t “block” beds. Under-resourced health care systems create situations where everyone is funnelled through the same place to receive care. Patients are put into competition with one another in moments of critical health crisis. Health care professionals are placed in entirely untenable situations where they must choose who needs them the most. Even though I’m back in grad school at this point, I’m still really, really sick. So I get out of bed to go to my own classes one day, then I teach undergraduates the next. And then back to bed. I study, read, write, talk on the phone, and watch phenomenal amounts of TV between my bed, the toilet, and the bath for the next five days. Every week. I’m still having problems with bowel blockages, so on several occasions I end up in an emergency ward, waiting for care.

I picture myself marching up to the front of the room, stripping my clothes off, putting on my hospital gown, and getting up on his lectern, shouting, “Wanna see a bed-blocker?”

I laugh to myself and take a deep breath. I return to the class slightly less nauseated but fully enraged. Professor Jones is actually filling in for this course. He usually teaches at the downtown university, which has an entirely different connotation than the downtown hospital in Vancouver. In Toronto, it means more prestigious and, as far as I’m concerned, more regimented. For one thing, the professor gives a multiple-choice quiz every week. He and the other teaching assistant mark these quizzes really hard. And, of course, I do get that the whole point of multiple choice is that there’s one right answer, so there should be no question of how “hard” they’re marked. But I like the students a lot, so instead I mark on how relevant I find the question to their education, which ultimately forces up the curve. I also mark a question right if I can see why someone who is thinking more broadly about health policy concepts would choose that answer. I don’t believe in tricking people.

I had no clue how difficult it was going to be to integrate back into the wider realities of the world after being isolated in sick-land for so long. I feel so unbelievably sensitive about everything, and enraged by the fact that people who are teaching health policy seem to have absolutely no idea what the embodied experience of those policies feels like.

At one point, a student called Zahra approaches me and explains that she can’t hand her assignment in on time.

“Oh, that’s totally fine,” I tell her. “Get it in when you can.”

She looks a bit flustered at my answer.

“It’s because I’m having eye surgery.”

“Wow, yeah, just submit it whenever you recover. It’s fine.”

She really wants to give me her whole prepared speech. She sounds nervous.

“I’ve got this letter here, and the surgery is on Monday, and the assignment’s due Tuesday, and Professor Jones says I can have until Friday.”

She tries to give me the letter.

“Three days? That’s ridiculous! Didn’t you say you were having eye surgery?”

Zahra looks shocked.

“Take as long as you want, honestly. It really doesn’t matter. And I’m sorry, but I just can’t look at that letter. I believe you.”

I have a visceral reaction to the thought of accepting a physician’s word over a young woman’s about her bodily experiences and when she’ll feel well enough to do her schoolwork. I realize that I’m already acting confusing and weird, so I don’t explain this to her. I wasn’t even aware of it until this situation came up, but I feel like if I accept this piece of paper, I’ve potentially become complicit in someone else’s medical trauma. On the one hand, I get that it might have been really stressful, hard work for her to obtain that documentation, and that other people will require it of her, but the part of me that was in hospital six weeks ago with a bowel blockage and a nasogastric tube down my throat just can’t ethically participate.

So she says, “Okay, well, I’m going to try and have it in for the Friday anyway, but thanks . . .”

I remember my fantasy image of fully embodying my patient role at the lectern and smile. I have written hundreds of pages through my endless hospital experiences over the past two years. So why am I writing and talking and teaching about health policy and disability and chronic illness in the abstract, when all I really want to do is get my gown on and describe the Canadian health care system from the inside out? It started as a joke. An inside joke with myself. I don’t want to apply to conferences to give papers anymore. I want to read from my chart, sitting on an academic table covered with a real hospital sheet and wearing my very own gown. And from this chart, I’ll read the stories of clinical encounters that I wrote from my hospital bed. I laugh cheekily, and then shelve the image.

As the term progresses, I’m finding it more and more difficult to function on even the two days I commit to playing the role of Grad Student. I remember a particular scene during my first class of the day where I go to the toilet and have such searing pain around my rectum that I can’t do anything but kneel with my face pressed against the inside of the toilet door until it subsides some fifteen minutes later. I am embarrassed that I’m not going to be able to walk straight afterwards, so I wait another chunk of time before returning to class. Sometimes when this happens, if no one else is in the washroom, I limp to the sink and wet toilet paper with the hottest water I can stand before returning to the stall to press it to my anus. I have no clue if there is any therapeutic benefit to this — I never tell anyone I’ve done it — I just know that searing my skin with very hot water is a relief compared to the pain.

I’m on a medication with a slight amount of narcotic in it that’s supposed to slow my bowel down to stop diarrhea. The issue for me is that I’m super-sensitive to narcotics, and so I spend a lot of the time on this medication really woozy and occasionally having full body sweats at inconvenient moments. So I ultimately decide that not eating when I have to teach or go to class is easier than taking this drug.

And, of course, I have that classic, boring relationship that practically any woman I’ve ever met has with her body. The one where we feel secret pride the less we eat, a shade of glee each time our pants become too large and we have to buy a smaller size. As I get thinner and thinner, the people who love and care about me get increasingly freaked out. And the people who either don’t know me or don’t like me enough not to project their own body issues all over me get very, very excited by how “great” I look.

During the first semester of the program, we’re learning about the history of hospitals and institutions where people with disabilities were locked up. I’m fascinated with the political context in which it happened, and it just makes so much sense to me. I’ve always felt a disconnect between the idea that we live in a democratic society, where the majority of people get together and decide what the priorities of our world should be, and the reality of how power operates in our daily lives. So in hospitals, why is it that we need to defer to the medical authority of doctors in order to be treated well? Surely, we would all prefer to enter the scenario as equals, where we can freely discuss possibilities and options, where someone else’s education and practical experience are simply a resource in collaborative decision making — not a license to dictate. So how did we get here? How did we move from the place where we invited medicine people into our homes as healers and supporters to the place where we need to check ourselves in — body, mind, heart, and spirit — to their institutions to follow rules we have no say in? When did the value of a professional opinion become directly opposed to respecting the deep wisdom and knowledge that we all carry in our own bodies?

3. Mountains, Trees . . .

And now, the very beginning.

Blair and I have just driven from Toronto to Vancouver, where I’m starting my master’s degree. I’m twenty-two, and I’m falling apart. Only I don’t know I’m falling apart because I’m twenty-two and I keep expecting to get better. Diarrhea and nausea are my “new normal.” They’re not constant, but on more days than not, they define my physical reality. I’m still mad at Vancouver. Like, irrationally angry at the city itself. When I hear the weather forecast and it’s better than Toronto, I react bitterly, like a jealous ex-lover. I recently found myself gloating when it rained there on Christmas. I still care for my friends who are there; it’s not them who I want to weather the stormy greyness. It’s Vancouver. The beautiful city that seduced and then betrayed me.

So, of course, the pages where I first wrote about my time there are stained with rage and tears. There was no joy the first time I wrote this chapter ten years ago. At the time, I had a yellow notebook with the university emblem on the front. At the beginning of the notebook, I wrote the words of scolding academics. In the back, I described the raging rectal pain I experienced while they spoke.

But before the pain and horror of the relationship breakdown, let’s examine the seduction.

I have snapshots of pretty images scattered throughout my memories of living in Vancouver.

Snapshot One: we arrive at the apartment, sight unseen, after driving across the country: Blair; my dog, Susie; and I in the U-Haul, and my best friend, Maia; her partner, Colin; and their cat, Tiggy, in their minivan. My friend Adrian tirelessly searched for us and, just days earlier, finally found this two-storey, two-bedroom little place near the beach.

Maia and I are completely exhausted and just the sight of the overpacked U-Haul and van is making our heads spin. I turn to her.

“Let’s walk Susie down to the water before we unpack.”

Maia looks guiltily at the guys, who are already unpacking.

Colin and Blair wave us on. “Go. It’s fine!”

They’re both the kind of guys to actually mean it, not just say it at the time and then sulk later because they were left doing the work. So we walk down to the beach; it’s a beautiful sunny evening, and Susie is thrilled with all the new smells. We see the outdoor salt-water swimming pool, the mountains in the backdrop. Looking in the little shops, we pick up a sunflower plant, crackers, and cheese. Feeling re-energized, we return to our new home and open a bottle of wine.

We all sit on various boxes and packing crates, eating and drinking and appreciating our new city.

Snapshot Two: thousands of people are marching across the Burrard Street Bridge. It’s two months after US and Canadian troops went to Afghanistan, and we’re protesting the war. Vancouver hasn’t seen a march this big since the anti-nuclear marches in the 1980s. The sun is shining brightly on this crisp November day, and as I stand along the side of the bridge directing the crowd with the other organizers, a group of students from my program at school call out my name. They’re carrying a banner and smiling and waving. I wave back happily.

Snapshot Three: it’s springtime and it’s my birthday. My friend Mali lives on campus, and she has set up a sushi picnic for me and our friend Adrian. We argue about the season finale of the sixth season of Buffy the Vampire Slayer. I love the episode, especially the part where Buffy tells her sister, Dawn, that she doesn’t want to protect her from the world; she wants to show it to her. Mali hates it and thinks it’s sentimental, individualist bullshit. We both love arguing the politics of Buffy. The weather’s warm; the sushi’s yummy; the view is almost absurd in its mountainous, spectacular glory.

Snapshot Four: I’m on the beach with Bobbie, my childhood friend from Manchester, and my dog, Susie. By miraculous coincidence, Bobbie and her partner have decided to spend the year travelling Canada and, without any prior knowledge of our plans, arrived in Vancouver three days after we did. My fourteen-year-old schnauzer, who vets claimed was close to her end three years before, is running up to the waves, snatching up large branches and playing with such glee that many people ask how old our little puppy is. The crisp, gorgeous smell of the beach in late evening matches the rays of sunshine beaming across the water onto Bobbie and me as we reminisce and peacefully walk.

I’ve always been a juggler of many balls. There were times in high school where, between classes, after-school activities, and part-time jobs and babysitting, I had an entire week of twelve-hour days. In university too: lots of part-time jobs, lots of activist campaigns, full course load. At the same time, despite being pretty well-organized, I’ve never been a particularly hard worker. I’ve always spent more time strategizing about how to do something efficiently than I have in the hard slog of labour. Like, when I watch Blair doing something, he tackles the task with a vengeance. He’s fully concentrated, unrelenting, practically un-distractible, whether he wants to do it or not. Just gets “stuck in,” as my dad would say. I thrive on distraction and multiple activities at once, and when I don’t feel like doing something, I do something else until I do feel like it. When I am well, I can be committed, passionately dependable, decent with deadlines, but always, in my own head, kind of a slacker.

The summer before we moved to Vancouver, the professor whom I wanted to work with on my thesis about the history of health care movements emails me and asks me to be her research assistant. The subject matter of the particular project doesn’t exactly fit my research, but I’m familiar with her other work around health care that does. We’ll call her Mitzi because it’s far enough from her actual name to be random but absurd enough to make me smile. A tool I’ve put in my chest for dealing with traumatic incidents is to have an inside joke with myself, and secretly calling her Mitzi helps. I already have some other jobs set up. One is a research job I’ve brought with me from Toronto. The other is social activist–type work that barely covers my rent. Mitzi is offering to pay me a lot more than the other jobs, so I’m thrilled by this new income opportunity as well as the chance to work closely with an academic whose books and articles I studied during my undergrad degree.

As the semester begins, my plate is full. I’m excited about all these things that are happening and that I’ll be working on. My program has its orientation, and as we students gather in the small building, introducing ourselves, the department head comes in and talks to us.

“We had hundreds of applications,” she tells us, looking meaningfully around the room, “and we only chose seven of you.”

The implication chills me. I thought I was entering a small, progressive program where we’d all engage in a supportive sort of solidarity. But here she is, setting a tone of competition and elitism on the very first day. When we meet privately, she pressures me to switch from the part-time status I’ve chosen to full-time. I explain that I have quite a few different things happening while I’m in Vancouver, including the research assistantship with her colleague. What I don’t say is that there’s no way I can afford full-time tuition anyway. I feel uncomfortable, out of my element, already scared that I’ve made a mistake in coming here.

Bobbie and her partner have chosen this day to accompany me to the campus and look around. They meet me outside my department’s building. It’s still hot in early September, and we climb down through rocks and trees to the beach. It turns out to be a nude beach, which I don’t remember knowing prior to climbing down. It’s pretty deserted. The only person we notice is an old guy wearing nothing but a fanny-pack who is selling pot. We strip down to our underwear and run into the cold, cold waves, then dry off in the sunshine. The first few days Bobbie and her partner are in Vancouver, they stay at our place. When the neighbours see a constant stream of six people, plus a cat and a dog, coming in and out of the small apartment, they’re a bit shocked but mostly amused, asking repeatedly, “How many of you are living in there?”

When I go to meet Mitzi a few days later, I’m open and honest about who I am and the kind of work I do.

“I don’t mean to mother you,” she says, “but you can’t be an activist and an academic; you’re going to have to choose.”

I want to say, It’s a really good thing you’re not trying to mother me, considering I don’t even let my mother “mother” me; you really wouldn’t get very far. But I don’t. She goes on to criticize her last research assistant. I don’t like this at all, just on principle — it’s a bad precedent for an employer to open discussions of her expectations by bashing her last employee. But part of me can’t help making desperate mental notes not to commit the same incursions as my predecessor. What doesn’t occur to me but possibly should is that Mitzi clearly has expectations of her underlings that she (a) doesn’t clearly express and (b) harshly judges us for not meeting. Over the course of the next few meetings, she interrogates every aspect of my life, frequently asking how the living situation with “two couples” is going, clearly believing such an arrangement is doomed to fail. She knows when I miss class because she just happens to be discussing my attendance rates with my other profs.

In the midst of this already unpleasant situation is a terrible confluence of events. I can’t actually find any of the material she wants. This has never happened before. I’ve always had magical powers with research. The thing I need always falls into my lap exactly when I need it. The book will open to the page with the perfect quote; the library will have the book I need sitting right in front of me as I walk in. Friends found the swiftness of my essay production really irritating, but no one could deny that the end product was almost always fine. But she’s asking me to find really specific material in really old periodicals that’s just not there.

4. . . . Bowel Disease

At the same time, in addition to the chronic diarrhea and nausea, shortly after arriving in Vancouver, I get a nasty cold that quickly turns into a chest infection. I’m trying to get my life back in order with school and work when I get the worst menstrual period I’ve ever had. I’m immobilized by pain for five days with what I later recognize as my first major bowel flare-up.

There’s a walk-in clinic at the end of my street. I reluctantly go in. First, I tell the doctor about the chest infection that won’t go away. He prescribes antibiotics.

“Also,” I say, “I just had the worst bowel pain I’ve ever had during my period.”

He looks up over his glasses.

“Like,” I continue, “I couldn’t even move. And so much diarrhea. It went on for days. I’ve been having issues like this on and off for the last couple of months.”

He looks judgmentally at my body, scanning me up and down.

“You would have lost weight if anything was really wrong,” he says.

He doesn’t actually ask me if I’ve lost weight, just assumes based on the flesh he sees curving over my bones and muscles that nothing serious could be wrong with my digestive system. I feel so shamed by his absolute dismissal that I don’t persist. I take my new prescription for my chest infection and leave.

“You should get the flu shot,” Mitzi insists when I vaguely say I think I had the flu. “My son and I got the flu shot. We used to get the flu all the time. Now we never get it.”

“Have you gotten your flu shot yet?” she accusingly asks me at each subsequent meeting.

“Do you have mono?” the director of my department asks me. “My daughter has mono,” she confides. “It’s terrible, just when you think it’s gone, always coming back . . .”

It is a person’s basic right to maintain confidentiality about our own medical conditions. It should simply be enough that someone states that we’ve been ill, without having to reveal the symptoms. Especially when they include things like terrifyingly painful rectal cramping and bloody diarrhea. But this basic control over information about my body is constantly challenged — it just doesn’t seem to apply to graduate students. At the same time, the department is central to an important interdisciplinary project that explores issues of illness and disability. Clearly significant theoretical issues, but quite unseemly when they present themselves in your office in the form of a graduate student. If my body is indeed a battleground, then my department and I are on opposite sides of the barricades.

5. Things Fall Apart

On the world stage, meanwhile, a war is starting.

On September 11, 2001, we wake up in Vancouver — three hours behind New York — about an hour after the second plane has hit. I sit on the couch, thinking, Oh, my God, imagine if I knew people there. With a sickening shock, I remember that my parents are visiting my dad’s cousins, the Irish-American Devaneys, in New York. Two days earlier, before they left, my mum phoned me from their house in Toronto with the number where they’d be.

Rolling my eyes, I said, “Mum, I’m in Vancouver. Why would I need to call you the four days you’re in New York?”

I vaguely considered just pretending to write the number down as she gave it to me but found a pen at the last minute and scrawled it down.

Now, on the morning of the attacks on the World Trade Center, I can’t decide whether to dial it. Maybe these will be the last few minutes that I can imagine my parents are okay. Better than knowing for sure that they’re not. I steel myself and phone, finding them in Long Island, safe but shaken. They were at the towers the morning before. Relieved, I decide to take Susie for a walk. I’m amazed because no one seems to be reacting. People are just getting on with their mornings. I can’t calm down. I finished the last year of my political science degree a few months before moving to Vancouver. Just that spring, I saw a film in my international relations course that showed the room in the US military facility where the “nuclear button” is housed. I have a really bad memory for films sometimes. Especially ones I see in class. So I can’t remember any of the context or descriptions of safeguards. The only frame I recall is some bored-looking dude sitting next to a button that has the power to blow up the world. As I walk past the happy, laughing people sharing breakfast and coffees on patios all the way down to the beach, I’m waiting for the end of the world. Of course, I don’t tell anyone that I really believe this. I make exaggerated mocking references to this anxiety over the coming weeks and get on with things.

Bombs start dropping in Afghanistan, and having always been active in anti-war campaigns, I get involved in organizing. One of my professors, Tara, becomes the target of a vile international hate campaign for speaking out. Friends of mine are in the forefront of organizing a public defence. My friend Mali asks me to organize the security for her first public appearance. Because I’ve done feminist community-type security before, I happily agree. I arrive at the meeting early to give the team of community volunteers some training and present the basic plan. When the meeting overflows and Tara decides to address the crowd gathered outside, I end up, as security organizer, standing at her side on TV news and in the paper. It’s hard to describe how random this feels at the time — I can’t imagine not supporting Tara and Mali at this meeting. To me, it feels like I’ve barely done anything, and yet, there I am, in the press, holding a megaphone.

Mitzi clearly does not approve. She later implies to the department head that the reason my schooling and employment are not in order is because I’m too busy being an activist. I wish. When the October bowel flare-up comes on, I’m in so much pain I can’t even think. My symptoms subside somewhat over November and December, giving me some reprieve to try to make up for the time I’ve lost.

In the meantime, BC Premier Gordon Campbell’s Liberal government lays off tens of thousands of people from the civil service at the same time as Blair is trying to find some permanent work. He does piecemeal organizing work for social justice campaigns and finds very short-term, badly paying research work at the university. A friend of mine who works in a bookstore tells me that they’re getting piles of resumés from ex-civil servants with master’s degrees every day. Throughout the fall, Blair’s out of work way more than he’s in it.

If any one of these things hadn’t happened, this story would have been drastically different. If the material that Mitzi asked for had actually existed, it wouldn’t have mattered how little time I spent getting it. If Mitzi hadn’t decided that she needed to take me under her wing and mother me, she wouldn’t have taken it all so personally. If Tara hadn’t been targeted, I wouldn’t have been in the national media supporting her. If Mitzi’s good friend hadn’t been teaching my Thursday morning class, Mitzi wouldn’t have known that I kept missing class because my morning bowel distress was often too intense to function with. If Blair had had reliable work, it wouldn’t have been so urgent that I kept Mitzi’s job. And, of course, if only I hadn’t been so incredibly sick, I could have coped with it all.

I call my friend Dawn in Toronto from a pay phone in the university library. She’s worried because I am describing dizziness and nausea — and even more worried that I am more focused on my guilt about “failing” Mitzi than I am about my own health. Dawn’s impression is that I desperately want to be able to do this work and produce things for Mitzi, but somehow I can’t. I am sick, and it is impossible to tell what is wrong and why I am still so ill.

Mitzi stops my pay without warning, even after I’ve already started making up my hours and successfully finding what very little material exists in the periodicals. The bottom line is that she thinks I have been lying about being sick and instead using her research money for nefarious activist purposes. She fires me. In the course of our dispute, she calls me irresponsible, accuses me of always having “excuses,” and tells me that I’m “not very bright.”

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