Today This Manic Mama talks to Sarah Talbot and Yantra Bertelli, co-editors of the book My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities.
I was officially diagnosed with two different kinds of cancer in 1983. Since then, I've never gone more than three years without a biopsy, and subsequently, there is no nervous anticipation attached to the results.
The lab examines the tissue and confirms what we already know, repeat, ad infinitum.
Observation: wandering around with a bandaged face is akin to having superhero skills. I'm invisible! People look at me, and their eyes slide away. . .
Except, of course, the people who stare, point, and whisper.
I thought I was used to this sort of thing but I forgot, or refused to believe, what it always feels like. My default setting is to ignore whatever I cannot change and this would fall under that heading, but honestly, the whole thing is tedious.
I've been thinking I should write CANCER across the bandages. Just to, you know, clarify.
When the skin cancer specialist heard that the genetic test was negative, he laughed and said "The plot thickens!"
Then he examined my face, and ordered more biopsies.
One of the more alarming aspects of my skin cancer is the fact that the tumours are unusual. No general practitioner I've ever met could accurately diagnose a lesion, and very few dermatologists have been willing to treat me.
Looking at my own face, I couldn't see what the doctor wanted to remove.
I could only see the scars.
But that is irrelevant, and the appointment was arranged.
On the fourth day after treatment I was still raw - literally - and my skin had broken out in a predictable and nasty allergic reaction to the dressings. My back was on fire with that special itch so well known, and loathed, in childhood.
Unfortunately, this meant that I had to grit my teeth and venture out to an upscale lady store, where they sell premium potions that actually work.
The experience of cancer, much like the experience of being a mother, involves large swaths of caretaking. Rendered, not received.
From the nurses holding my shoulder to the taxi driver who picks me up outside the clinic, the friend or family member who changes the dressing on the wounds, the person behind the counter as I buy a cup of coffee: whatever happens, whatever they say, it is my job to either conceal the truth or make them feel better about what they are looking at.
Make-a-Wish and similar charities either did not exist or did not reach my hometown in the year I was diagnosed with two different kinds of cancer and a rare genetic disorder. If they had, I would have asked for something along the lines of a trip to England and a visit to the set of a certain science fiction television program.
But they didn't, so instead, I got a television of my very own. I curled up around the pain and the remote control and watched endless cryptic episodes of Doctor Who, wishing myself away. Anywhere, everywhere, elsewhere.
I was talking to an old friend about a mutual acquaintance who stopped talking to me about ten years ago. She asked what happened between us, and I shrugged. "I don't know," I said. "I didn't do anything, so I can't comment."
There was a disbelieving double take. "You don't know what happened?"
"I was't around, I wasn't there. I was literally not in the country."
More probing, more shrugging. I said "I didn't steal her money, kick her dog, or fuck her boyfriend. Though I could have, I resisted. Therefore, I did nothing wrong."
I was in a speciality clinic recently and the doctor tapped his pen on a piece of paper. My blood work showed significant problems with my liver.
He said "Either you are drinking yourself to death, or you have hepatitis."
I blinked. "Um, well, I don't drink, so I guess we can go with the other hypothesis. Or wait, maybe I had it? No. Yes. Definitely. I remember, I picked it up in the hospital in the middle of the cancer years."
The doctor started taking notes. "Which kind? A, B, or C?"
My productivity is set by the health of my right hand, and that is determined by how often I use it.
If I rest, and keep the arm close at my side, the hand remains useful for simple tasks like opening doors. But if I do any manual activities for longer than half an hour - including but not limited to cooking, cycling, and typing - the hand blows out. Literally: the numbness starts in my smallest crooked finger and spirals up around the arm to my neck, with shooting pain following posthaste.