The dietician was the last person I spoke to when I was discharged from the hospital on Monday (yes, Monday, three days ago, Monday). He was being almost-too-respectful so I kind of felt like I had to shake him down for insight and advice. I wanted to know how I ended up in the emergency department on Friday night. I wanted (like always) to know how to never ever ever be here having this conversation ever ever again.
The best piece he gave me was this: “Be cautious, of course, I know you already will be, but you could have the exact same three days you had before you were admitted three weeks from now and be totally fine. A lot of this is luck.”
It made me think of everyone’s favourite condescending judgment about people repeatedly doing the same things and expecting different results. The truth is we can never really do the same things over and over because too many factors are always out of our control. Flare ups, post surgical complications, recoveries, remissions, wound healing, agonizing episodes requiring urgent medical intervention. We can hyper-manage our diet, our activity and stress levels, our sleep schedule but really, more things than we like to admit are unpredictable and unpreventable. Friday night, nothing I had done before to relieve pain, nothing I had done before that moved blockages along had any effect at all. In all of these years I had been waiting for the right moment to rate my pain at a “10”, and Friday finally presented me with that opportunity. Nothing provided any relief until the emergency room nurse inserted the nasal-gastric (NG) tube through my nostril and into my stomach and suction began. The skill I’ve learned from bowel obstructions is how to wait for survival.
Today marks ten years since my Master’s degree convocation. As you can see in the photo my pink hair matched my rosy cheeks. It was the day after my first public performance of My Leaky Body, the first time I took my performing gowned body out of the comfort of academic conferences and classrooms. Smiling in this picture, I hoped that my days living my leaky body were ending and my days of performing it and writing it could be less scarred by the constant experiences of debilitation and hospitalization. I thought I would be only writing medical stories from the past, not rapidly accumulating new material to mine in the decade to come. But I also didn’t know the magic of receptive audiences and reviewers, the thousands of heartfelt messages from people with similar experiences, the providers who would tell me that my writing and workshops had supported them in the being the type of compassionate and collaborative health care professionals they wanted to be.
Or, that I would spend the tenth anniversary of my graduation on a panel with two other activist writers presenting to librarians about our forthcoming books in the new Fired Up series. Emma Woolley (at podium, bottom centre) talked about her book Fired Up about Feminism, I spoke about (being) Fired Up for Healthcare (bottom right) and David Molenhuis talked about Fired Up for Student Rights. We all talked about the ways young people are commonly maligned for being apolitical only to have their activist ideas dismissed as unrealistic. We talked about the need to engage young adults in exciting, honest and personal ways about big concepts that matter to them. And how this kind of engagement is the only way anything ever changes. I mentioned feeling reasonably well-situated to do this given the fact that none of my perspectives have changed much since I was a teenager. But how all of those values I still hold came from real people telling me real stories about their experiences in the world.
Usually bowel blockages are just “partial”, food that has trouble finding its way through. It hurts like all hell but there are ways to encourage movement. Literally moving for one, applying heat, stretching, drinking mint tea, waiting, always waiting. The only time other than this past weekend that these strategies didn’t work was August 2004. It was six weeks after my third bowel operation and I developed what turned out to be a scar tissue adhesion. I hadn’t slept for more than an hour at a time for weeks. The Emergency department was chaotic, the staff disrespectful. By the time they got the NG tube in and found me a bed in a room I felt like I had completely lost the plot. And despite the fact that the psych resident looked twelve, his prescription pad produced the necessary relief. I slept and was suctioned and five days later was recovered enough to go home. Less than a month later I started grad school and sat in a lecture for the health policy course I was teaching assistant for, where the professor described patients like me in emergency rooms as “Bed Blockers”. I was so shaken I had to walk out of the lecture. This story became an early chapter in my book.
Last weekend I was treated like anything but a “blocker”. They started my IV at Triage, found me a stretcher. Within an hour the single doctor working the entire Emerg who I never actually met had written orders for medications and tests. The X-Ray technologist was nice to me while he held my kidney basin full of vomit. I kept apologizing and he firmly put his hand on my shoulder and said “Stop apologizing, it’s okay.” Perhaps none of this should be remarkable, but it really is. And I definitely didn’t predict it at home at midnight when I was still fending off well-meaning pleas to take me to the hospital.
The surgical residents were not affiliated with my surgeon and were nice enough but way too twitchy and nervous for me to let them touch me. The nurse was young but seemed self-assured so I really was just double-checking with her when I asked if she was good to do my NG tube when the time came. She agreed.
I told her I always prefer nurses for such procedures and she tried (unsuccessfully) to stop laughing when I pointed at the young men leaving my booth and said, “They are not allowed to touch me.”
She leaned in when she said softly, “I can imagine you’ve been through this a lot, I don’t blame you for feeling that way.”
The sensation of a tube being pushed through my nose, down my throat and into my stomach is one that never really fades.
Fourteen years ago today was the first day of my longest ever hospitalization. No one knew what to do with me. It was post-diagnosis, pre-surgery, when me and my disease had been declared refractory and unmanageable. When I wrote about it I talked about the film Groundhog Day, and feeling like I was repeating the same day over and over and over until somehow it came out right. It was long before I’d met my friend Robin Duke who plays Doris the waitress. And this year, her play, I’ve Been Hacked: The Robin Duke Cancer Story will be hitting theatres (as details become available I will post them and not stop posting them and you will see them). On Groundhog day fourteen years ago, I never would have guessed I could be Robin’s story editor and dramaturg. I like marking time, knowing and feeling the anniversaries of things. If I can’t control the details and the timing of life, of health, of recovery, I can at least plant dates as signposts in my own narrative. One solid piece I can grasp and manage.
Today I peeked out of my recovery burrow, like so many groundhogs before me, and saw my shadow. Winter might be a little bit longer than I would like but perhaps hibernation will produce more writing (please, no more content for writing, just writing). I love librarians, and now I need a nap. The skill I’ve learned from life is how to wait for survival.