Thursday, October 21, 2010

Anemic Enigma & Cardio Bunnies

When she called me last night with the blood results she had a grave tone of voice. I was approaching my best friend's house on a country road a couple hours northwest of Toronto. Even though I was expecting the call, the whole getting-medical-results-on-speakerphone thing was slightly creepy,

“Hi Julie, how are you feeling?”

They only ask this when something's up. But I'm seriously bored with medical drama so I didn't bite,

“Great! How are you?”

“Um, I'm fine. But your results aren't good.”

“Ok, so what's my hemoglobin?”

She gave me the number and asked, "Can you come in tomorrow?” adding, “You really should've come in a lot sooner.”

Blah blah BLAH. Definitely not the news I wanted.

Now it's tomorrow and I'm sitting here with my IV. It's both concerning and not, at the same time. And I can't decide whether I feel more vindicated or irritated.

2004 I had my third and final bowel surgery, and by 2005 I needed regular blood transfusions because for some reason my body just gave up all responsibility for storing and producing iron. Many many many tests and specialists later, with heavy speculation about other autoimmune disorders and possible cancers nobody ever figured out why.

As the nurse who just hooked up the giant bag of iron meds to my IV said,

“You're an enigma.”

And part of me wonders if this is my and/or my body's point. We've always liked stumping them. Being unique, hard to box in. Leaking outside the boundaries of simple diagnosis and (cringe) medical management. They had to take out my refractory colon because it refused to respond to treatment, instead choosing disintegration as its path to infamy. And now I have resistant blood.

I don't know if it's because I'm so used to periodical bouts of extreme anemia that I barely notice or if I'm just really well-practiced in denial about my health, but this blood-result did catch me off-guard. It's true I've been unusually cold the last few weeks. But it was suddenly autumn. And Twitter was rife with people complaining about being cold. Also true that I'm having trouble concentrating and have been having extreme bouts of grumpiness. Both symptomatic of anemia. But considering I'm finishing the final edits on my book manuscript about the most traumatic time of my life and at a time when the publishing industry is um, uncertain (and lets just leave it there), my foggy, dark brainspace isn't too surprising.

Physically I've been mostly fine. I completed a full-half of a class with a cardio bunny teacher at the gym the other night. And I didn't leave because I was dizzy or out of breath. I left because she was incredibly bouncy and annoying and that wasn't the class on the schedule. I would never intentionally sign up to be patronized and choreographed into humilliating versions of femininity. (Slightly off-topic rant). But relevant, because I should have been too anemic to even do half that class. And my calf hurts. Stupid bouncing, grinning, shouting bunny class. Seriously. But how could I even follow her enough to hurt myself if this mysterious and sudden bottoming out of my body's resources was a sign of something really scary?

And plus, here's what I've been saying for eight years now: after living with extreme, chronic illnesses I can have a full and happy life with what to me feels like perfect health even if medical professionals would describe me as having bad symptoms.

The very first time they brought me into this hospital the phonecall from my doctor was a lot more panicked than yesterday. I was home the day after a conference. I'd given a talk, hung out all afternoon and evening in the pub with friends. I was aware that I was feeling kind of dizzy and off, so thankfully had chosen not to drink, just to hang out. The conversation started like this:

You need to get to the hospital right away.”

The blood result that preciptated this was days earlier, so he wanted to know how I was coping. If I'd blacked out or been fainting. If I was able to climb stairs, or even walk. He was shocked when I told him about my weekend.

I'm actually ok,” I said, “dizzy, but you know, functioning.”

I felt like saying, “I've felt like complete crap for four years straight! Of course I didn't think anything of it! How am I supposed to know the difference between go-straight-to-the-hospital-and-don't-pass-go kind of crappy and suck-it-up-and-build-some-kind-of-semblance-of-a-life kind of crappy?!?” Hence, the fusion of my irritation and vindication.

So B drove me here, and we sat in a curtained booth in emergency while some kind donor's blood dripped into me for the rest of the night.

In the following years as I got bounced around between panicked specialists who often spoke in very slow, quiet tones about the things I might have, I started loving blood transfusions. I knew I was really anemic once when I watched a porter pass me with a bag of blood for someone else and I began salivating. Possibly too much Buffy, or possibly a desperate body having a natural, animalistic reaction to sate its anemic cravings.

With five years of this, this hospital clinic is my most frequented medical place. It feels that familiar and comforting too. The staff here feel like cousins and aunts with the same sorts of questions and banter,

“Hey you look great, how are you?”

“Any babies yet?”

“When's your next show?”

“Am I in Act 3? Hahahaha!”

And I know about their families and lives outside of here too. Because I get my iron in a chemo clinic they're all expert at finding my veins, starting IVs and taking blood. It's comfortable, easy to be here. I always get lots of writing done. Especially on days like today, where they're completely understaffed and I end up being here for 5 hours.

I've been on a million different protocols to pre-emptively solve these extreme and sudden anemic crashes. Eastern, Western, exciting combinations of both that I creatively construct and enact. And I'll have entire six to nine month intervals where I'm inexplicably fine. There's no pattern here. To me, it seems fairly reasonable for my body to object to having parts cut out. I feel like that's enough reason for it to sometimes give up on the whole iron-thing. So for now it's just about accepting randomness. Whatever is happening, however any medical textbook wants to describe it, it's been happening for years now, and I'm doing just fine. So I can either panic every time there's a grave voice on the other end of the phone, or just trust my leaky body to use it's own intrinsic and mysterious wisdom to pull me through. It's worked so far.

Friday, August 27, 2010

The Body-Shaming Epidemic

We suffer from a shaming epidemic.

Over the years, as a society we've shamed people for sexual choices, drug use, racialized identities, choices that aren't consistent with the rigid gender roles they've been assigned, and many many more things. In most of these cases most of us have come around to realizing that the problem isn't who people are or what they're doing, but instead a culture bent on shaming us all into conformity and/or submission.

All we have to do is look at the raging success of abstinence-only education to see the effects. My favourite anecdotal (and yes, fictional) example is in Glee where Finn believes Quinn that he impregnated her by ejaculating while they made out in a hot tub. Shaming doesn't change people or our desires, it just makes things more hidden, ill-informed and in this case, confusing.

Cue the raging, inflamed and unstoppable Obesity Epidemic Debate.

It recently came to my attention again in a Twitter discussion between Dr. Brian Goldman from CBC's White Coat, Black Art, and Melissa Travis, a writer/comedian from the States. I was writing for a deadline at the time and while feeling that I couldn't wade into this conversation with 140 characters I also knew that blogging about it would be deadly for my deadline.

Dr. Goldman re-posted an article that another doctor posted about how shaming people for being “fat” could be as effective as shaming people for smoking supposedly was:

RT @sandnsurf Reading: Being harsh on smokers worked, how about the fat?

And re-tweeted another doctor asking:

RT @kevinmd Obesity in American children and adults continues to grow. Why is this problem so hard to tackle?

Melissa, known on Twitter as @DrSnit, responded to these posts by pointing out that not all weight gain is a choice, and that having these conversations with doctors can be painful. Dr. Goldman agreed. Others weighed in about smoking being a behaviour, while body weight isn't. This was weeks ago now, which is a lifetime in Twitter-feed land, so I might have missed some of the dialogue here. Please feel free to wade in @WCBADoctorBrian and @DrSnit.

The premise in the first article is that being really mean to smokers saved us from one public health epidemic so why can't we just be really mean to fat people? First of all, I question the data that shaming people about smoking “worked”. We all engage in some degree of addictive behaviour. This is endemic to our culture. For an excellent read on this, check out Dr. Gabor Maté's In the Realm of Hungry Ghosts. Addiction by it's very nature is compulsive and not rationally linked to the thing itself, whatever that thing is. It doesn't make sense to me then, that shaming smokers made anyone less compulsive or addicted. Maybe they stopped being addicted to cigarettes. Maybe that was great for certain individuals. For others I'm sure that it meant picking up equally or more problematic addictions.We also socially support and prop up equally unhealthy addictions, like workaholism, to name just one, that is almost entirely driven by guilt and shame.

Also, using shaming as a tactic means that "success" is people feeling really really bad about themselves. On a purely human level, that will never be a win to me.

And now on the “Obesity” question. On a basic Public Health level, the framing of this debate in the mainstream media is completely inaccurate. The biggest factors that determine our health are NOT lifestyle choices. Ranked by Juha Mikkonen and Dennis Raphael in their new book, The Canadian Facts, here's what creates conditions for sickness or wellness in Canada right now:

    1. Income and Income Distribution 2. Education 3. Unemployment and Job Security 4. Employment and Working Conditions 5. Early Childhood Development 6. Food Insecurity 7. Housing 8. Social Exclusion 9. Social Safety Network 10. Health Services 11. Aboriginal Status 12. Gender 13. Race 14. Disability

Any epidemiological study worth its salt points out that poverty is the biggest health epidemic facing us globally, and I would add to this list for many other nations around the world, war and state-sanctioned violence.

The first time I wrote publicly about my views on this ended up being the only time. In 2004 I wrote a review of the film Supersize Me (I hated it) which someone posted without my permission on New York City Indymedia and started a vile flaming war about my apparent fatness and inability to get laid. Because it was the same year I'd had my third bowel operation I was so thin at the time that one of my friends suggested I post naked pictures of myself in response. But this was besides the point. I rose above it and responded politically on Canada's Rabble. And despite many warm, lovely and astute responses, I've never written publicly on such matters again.

It's just too painful. People have made political aspects of this debate incredibly personal at the same time as blanketly and inappropriately attacking people and our body-shapes while pretending to just state objective “health” facts. And somehow people use our personal histories to discredit our political points. Yes it does hurt that the same kids who called me “blowfish” in grade five because of my chubby cheeks also frequently threatened me with violence as they spent entire days letting me know how many kids would be waiting at the gym doors to beat me up after school (p.s. if you're wondering why I never answered your Facebook message about how excited you are for my success in life, now you know). It's also infuriating, because when I look at childhood pictures, the assertions of my classmates were absurd. Some of the worst bullies were much bigger than me. But of course I didn't see that at the time. Instead I started obsessively reading up on how to develop my first eating disorder at age 11. As an aside, this is why cautionary teen fiction tales about why eating disorders are bad and dangerous don't work. Girls just scour them for tips and tactics.

Women still try to draw me into conversations with alarming frequency where we're supposed to hate on skinny women. The premises of such discussions always appall me. First, that because I'm not skinny I must hate my body. Second, that because a woman is thin, she's either way more disciplined or lucky than “us” or way more oppressed, depending who's engaging me in this conversation. Can we all please turn the gaze back at the mass marketing machines that sell us shame simultanously wrapped in fast-food drive through containers and in magical herbs that promise infinite waifishness? The shame needs to be pointed squarely back where it belongs.

At the same time as these matters play out personally all the time, that doesn't make them any less political. It probably makes them more so. Using mean and mocking images of people's bodies (as the above articles as well as every single news report on this does) individualizes social health issues as a feature of our bodies, rather than a problem of world that perpetuates the conditions of poverty and oppression I listed above.

Bullies everywhere and of every age use body-shaming as a technique. The resulting emotional pain, self-loathing and stress are really bad for our health. How is the suggestion to be “harsh” and bully people about their weight possibly legitmate public health policy, medical practice, or even remotely socially appropriate or desirable in any context?

We need solidarity, not shaming. We all have intrinsic value and deserve respect. We are all more than the sum of our parts, regardless of the substantiveness or sleekness of those parts. So to anyone waving that Obesity Epidemic Flag, either because you're genuinely concerned about people's health, or because it's the last socially-acceptable way to get your rocks off being nasty to other people, please, please, please, please STOP. 

Monday, August 9, 2010

Like God Vomited Fairies onto the Danforth

Last summer, a very drunk friend who'd been looking in on my Nia class earlier that day pronounced,

"It looked like God had vomited fairies all over the room. And you were all twitching."

She said this as if I was going to be offended, but in fact I was delighted. For one thing this particular friend does more traditional forms of dance, ones that are focused on minute details of form and how dancers look and what audiences see. I feel exhausted just typing it. Definitely not for me. So her impression appealed to me. Also, it reminded me of my favourite novel, The Good Fairies of New York by Martin Millar -- Scottish fairies called Morag and Heather with a penchant for punk rock and an oppositional attitude towards authority show up in New York. They immediately puke on the carpet of their unwilling host and announce that "fairy vomit is no doubt sweet-smelling to humans." (I was Morag for Hallowe'en last year).

So on Saturday, when my fantastic Nia instructor Jenn invited us all to do a public demo, on stage, for Taste of the Danforth I was torn. On the one hand, I feel like it's pretty cool to have an all ages dance party on stage, irreverently breaking all norms of appropriate womanly behaviour while people are watching. On the other, the whole point of Nia for me in the last four years has been that no one is watching and I'm just doing what feels good to me. Doesn't it defeat the point to do that on stage?

In 2006, I showed up to my very first class, taught by the amazing Samantha and Serena.  I walked into the studio in bare feet and a sun dress, ready to dance. The summer before I'd been barely 100 lbs, and since then I'd thrown out scales and refused to look while healthcare professionals weighed me to try and at least preserve some emotional and mental health while still so physically deteriorated. The main thing that scared me was how much I loved how I looked back then, I certainly got enough socially-positive feedback for my skeletal frame. so even though I'd gained some weight by now and could walk more than a block without getting winded, I was still weak, tired and in frequent need of blood transfusions. 

They had rented space from a ballet studio and pointed to a sign on the wall that said, “Discipline”.

"See that?" they asked, "That's the complete opposite of what we're here to do. We're here to find the pleasure in movement, the joy in our bodies." 

And we started to free dance. I pictured myself as a fairy, dancing through a magical forest. A fantastical land where I no longer had Crohn's Disease, I wasn't so anemic I could barely function, and the pain of three bowel operations was a distant echo. All this bliss, twice a week, a short walk from our old apartment.

And now in 2010, strong and healthy, I get ready to do this onstage. I essentially assigned my self this challenge as a kind of character building exercise I give myself now and then, like not untagging myself in Facebook photos I don't like. So I'm sitting backstage waiting first 15, then 20, then 25 minutes and I begin thinking that I have enough character. For one thing, in a lighter moment during my illness, my partner Blair showed me a comic strip from the Calvin and Hobbes canon about how diarrhea builds character. So seriously after 10 years of Crohn's, I must have shitloads (Sorry. Really. Sometimes I just can't resist poo-puns). 

That said, I also came all the way here, and I'm already wearing my pink, Nia “I love my body” shirt. Which miraculously (and appropriately) looks great on everyone. I know I can leave at any time, there's lots of women going up on stage and no on
e would mind if I duck out early. So when it's finally time for us to go on, I take a deep breath, and do it.

The warm up is great, stretching and flowing, I'm hitting my rhythm, not even looking out at the crowd. Then we move onto song number two. The more structured a dance is, the more likely I am to fail. I'm hiding in the back, flailing awkwardly and badly improvising when I look to my left and see perhaps one of the least desirable people (LDP) I could ever want to see there. LDP is leaning up against the barrier on my side of the stage grinning and making hammy type gestures trying to get my attention. I initially fail to recognize LDP  because LDP didn't even occur to me as a possibility in my most paranoid nightmarish predictions of who might see me onstage. When I realize who LDP is, I manage to avoid eye-contact, trusting that LDP's attention-span won't last the full hour we are dancing. This strategy means that I'm essentially stuck on stage now, because I don't want to get off alone and end up talking to/being mocked by this person.

So in my own mind I start hurling ridiculous (and yes, possibly unfair) abuse at LDP. As I keep dancing my inner-rant takes a turn to the absurd and makes me laugh. And in this moment, as I find myself, grinning, giggling and moving to the music I realize that this is the point of doing Nia on a stage. We want people to see that moving our bodies can be fun and funny and irreverent and self-reflexive. We want to demonstrate that dance can be an act of love for ourselves, instead of a source of stress and focus for discipline. 

We want to show off in a real way that a group of women of all ages and body-types, can get on stage and have a fabulous dance party. Little girls get up on the stage and join us. Members of our group filter out into the audience. Random people in their tourist-y fanny packs join in in front of the stage. And I catch our reflection in a store window as we're turning and kicking different legs in different directions and genuinely think, “Wow, we look hot.”

We 're smiling and laughing and moving with abandon and I'm proud. I am an irreverent punk-rock fairy – unceremoniously vomited from the mouth of creation, just enjoying the riot.

                                                                   Picture courtesy of Mopo Art. Me in polka-dot skirt.