Showing posts with label end-stage kidney failure. Show all posts
Showing posts with label end-stage kidney failure. Show all posts

Saturday, May 17, 2014

Best legacy for Michelle is to keep this conversation going

   

    May the hills ring with our conversations about disordered eating in the wake of Michelle Stewart’s death. I know it would please her to think that we weren't just going to let that elephant in the room pass unnoticed.
    What I mostly know about the various disordered-eating illnesses is they aren't about disordered eating at all. Eat a lot, eat a little, obsess about burning it off, throw it up, fixate on it – food is ultimately just fuel for the body, but for some people it becomes a way to manage the bad feelings of your life. For me it seems almost like cutting, where the pressures of the world are all just a bit too much and so you seek a release within your control. For the "thin" disorders like anorexia and bulimia, it’s also got that complicated social aspect of netting the sick person more compliments for keeping themselves so slim.
    Positive feedback for negative behaviour. Not good. Pretty soon it’s a habit.
    When I consider my own few years with this problem as a young woman, I see a recipe that started with me as a little girl who already thought poorly of herself and had experienced an awkward stage around 10 or 11 of looking like a potato. I then got pregnant at 16 – a body-image nightmare – and inadvertently ended up with a doctor who was a freak about pregnant women keeping their weight down.
    Seven months in he told me that I had gained all 20 pounds I was allowed to gain. I walked out of his office and straight into disordered eating, becoming completely obsessed about not gaining an ounce for the final two months of my pregnancy. I would stay in that mode for the next six years, controlling my food intake with an iron hand until the day a passing stranger who I fancied saw me in a bathing suit and told me I looked like a starving person. 
    I don’t know what it was about that comment, but I heard it. I was 23. For the first time in years, I looked in the mirror later that day and saw the prominent hip bones and ribs, the gaunt look around my face.
    I never went back to those hungry days. But I have to admit that even now, when life’s problems overwhelm me – no job, no home, no car, dislocated in my own culture, the future unclear - the first thought to my head is that I have to lose some weight. I can write those words and think, whoa, what does that have to do with ANYTHING, but that doesn’t mean I can stop the thought from coming into my head. I’m almost 50 pounds heavier than I was when disordered eating had me in its thrall, but my inner anorexic has never really left.
    And like always, body weight questions in our society of plenty are double-edged swords for all of us – necessary to pay attention to for all kinds of health and aging reasons, bad to pay too much attention to.     Those who think we simply shouldn't talk about body weight need only look around at the growing girth of the developed world to know that’s not true either.
    So. No easy “cure,” unless one thinks that potato-shaped children, troubled lives and compliments for being slim are going to disappear anytime soon. If you have known the virtuous phase of a fast, you will also know the compelling feeling of clamping down on your own eating. It’s a siren’s call – brain chemicals, I suppose.
    The disordered eating is the symptom – a killer, insane-making, suicidal symptom, but still just the symptom. The reason for why we do it is something else entirely, and different for everybody. Any hope around treating this frustrating illness hinges on our ability to figure that piece out.
    I never had the chance to know Michelle Stewart in any kind of meaningful way, although we did have a handful of surprisingly deep conversations on Facebook when I was still in Honduras and she was in the last months of her life. I thought from the get-go that she had been enormously brave to confess to the world why she’d developed end-stage renal failure, because nobody would be expecting you to own up to three decades of anorexia and bulimia and she probably could have kept that truth hidden.
     But by refusing to, she invited us all to step forward into this debate, to peel back the layers on this issue and kick up the research and bring it into the full light where at least some of its baffling mysteries might be revealed.
    What can one person do? We can talk. Those of us who have been there and back can poke our heads out of our closets and at least lift some of the shame of this illness. Those who know this beast more personally need to find ways to share our experiences around where eating disorders come from – and more importantly, about how people leave them behind.
    Because they do. That’s where the hope is. I expect Michelle would love that, to think that hope might emerge as a result of the conversation started by her own sad and unnecessary death. 

Thursday, May 15, 2014

Goodbye, Michelle - you'll be missed

    Sad news today about the death of Michelle Stewart, the long-time B.C. government communications person who came out so bravely a year ago with a blog on life with end-stage kidney failure due to a lifelong eating disorder.
    A communicator to the end, Michelle kept on blogging right up until a month ago, when her deteriorating health got to be too much for her to continue. I highly recommend a read of her blog for anyone who has had or wondered about what it's like to have a persistent eating disorder, because Michelle did some of the most insightful and painfully honest writing about that torturous condition that I've ever read. She made what was surely a immensely difficult and ultimately fatal decision to let her kidney disease go largely untreated (the treatment, a transplant, would have worked only if she could have gotten control over her eating disorder), and then blogged bravely about her body's relentless deterioration as the disease took over.
    Those who know her well will remember her for all kinds of reasons, but may she also be remembered for her exceptional abilities as a government communications staffer who became an expert in her own right on the foibles, complexities, struggles and shining moments of our challenged health-care system. As a journalist, I always liked it when Michelle was the person I got passed off to for answers, because then I knew for sure I'd be getting an answer and that it would be a meaningful one.
    I didn't get the chance to know her more personally until she was already dying. We connected last year on Facebook after I started reading her blog, and I soon joined what I imagine was legions of fans who she'd exchange endearing messages with from time to time.
    I admit, I selfishly wished that she would still be well enough to have visitors when I returned from Honduras in early April. I'd met her in person no more than once or twice in all our years of living and working in the same city, yet felt after our electronic correspondence over the past year that we had all kinds of things to talk about.
    Unfortunately, she was already too sick when I got home for us to be able to have those conversations. But the gift of her blog is that people who never got the chance to know her while alive will still be able to take in her well-informed and insightful thoughts.
     Catch you next time around, Michelle. You did your job well. You loved and were loved. You made a difference in this world, and shared yourself with all of us this past year even when it would have been so much easier to have just left those painful stories untold. Thank you.