By Julie Devaney
“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 its own intrinsic and mysterious wisdom to pull me through. It’s worked so far.