I had a sticky moment this morning.
So, fortunate to be unemployed, I can read. And after reading every single response to the blog, I had to think. I had to break the skin of the messages to understand what was beneath. ‘There is no guarantee that the recipient has read or understood the message contents’ showed up in my inbox the other day and I took it as prophetic. In the arena of the Diaries it never occurred that talking openly about cancer is anything other than perfectly natural. And hopefully kind of, like, hilarious. I mean Membership into the cancer club has come with a long set of Seinfeld-esque episodes that are too juicy not to share. Including the meltdowns, reactions to the meds or the bleed in your spirit after a day when you need support but don’t know how to ask. In the beginning of our relationship bobcat and I had a saying: the tough part is over. That’s how I felt after the diagnosis. Ok, I’ve got The Cancer. The tough part is over. TTPIO. I’m committed now and like any long term relationship, there’s gonna be some baffling days when the only out is humour or a cleansing cry. But I never thought of giving up. And it’s never occurred to me that I won’t show up rebooted on the other side.
And then I understood. It’s a taboo to speak openly about long term, potentially fatal diseases.
Jeez. Why didn’t anyone tell me?
I would have spoken earlier.
So I started thinking bout a revolution: A world without the pathology of perfection. Without an unrealistic and painful belief system that we are entitled to get through life without suffering. And then a chance to live fearlessly and realize how important it is to say what needs to be said , and do what needs to be done. Even with insurance companies.
That’s why I am encouraged. The pure, frank, no filters exchanges I see through the Yellow Diaries celebrate the recurrent shock of living. Don’t deny. ‘I can be changed by what happens to me- but I refuse to be reduced by it’ said Maya Angelou. It’s a relief to be able to respond accurately to the world.
Then I felt confused as a hippie who has forgotten any worthy cause. So I took ten oval shaped pills for the team. Back to gently carbonating. And then I got sticky.
I busted out all my Swag from my visit to the IT Lounge yesterday and put it all on at once. A word here about swag. I don’t know the origin of the word. It was a mystery, my first few years of junketing at film festivals, these loaded bags piled discreetly at the back of PR suites. Then the year of ‘Water’ opening the TIFF, I got invited to every gift giving suite at the festival and well, kinda got used to subsidising my basic necessities every year after. Swag suites essentially give away everything from vitamins to jewels to the various grades of actors in various degrees of sheepishness. This year however, the IT Lounge at the Windsor Arms got each sponsor to partner with a charity, and will make contributions equivalent to the amount of the goodies that leave the lounge. Suzanne coordinated the visit. I was particularly happy to meet Rob Drynan of Camp Oochigeas, a renowned and fiercely compassionate camp in Northern Ontario for children with Cancer. Coincidentally, Bobcat did an 800 Km charity cycle for the Camp a few weeks ago so I knew of the camp and its reputation. In a year of serious fundraising challenges, these efforts need to be acknowledged. Cynics can take my macaroon and shove it.
So this morning, my response to our cultural stigma against full disclosure of chronic and potentially fatal disease was to pile on three Goody headbands, a pair of Brooks running shoes and a tiger’s eye and turquoise necklace. Then I sampled all my Kiehl’s products. I’m back on steroids so sticky fingers turned me towards the question of sustenance. A couture brand of chocolates had made its way into my goody bag whose tagline could be ‘too beautiful for you to eat.’
Ah, the macaroon. If you ever want a visual representation for the definition of ‘torture’ for someone on Dex, here it is:
One lick and its over. I’ll revisit after the roids.
Right now I’m looking for Hemingway’s mythical ‘Moveable Feast’. A taste which will trigger a banquet of wholeness of mind, body, spirit. Yellow feeder. I’m amping up my Yellow every day.
A little more on Yellow now.
After filming ‘Cooking With Stella’ in Delhi, I travelled to the mountains in India to try to fable my way back to basic goodness. Eight months later and I returned with Yellow. It’s enough now to distill all my spiritual experiences into this current of colour.
In some part of my heart, I believe my MM is a physical component of this spiritual/psychological cleaning.
When I found out I have The Cancer, I called my spiritual mother in Milano. She lived in India for years and penetrated my marrow. ‘There are two opportunites to grow suddenly in life. One is through sickness. Another through madness. I am glad it is not the second.’
I remember in the days before my bone marrow biopsy, before the ever more frequent visits to hospitals and specialists became protocol, pre-chemo ‘callsheets’ and just before the ‘Bobcat near fainting incident we shall not discuss but which I will blog about’, I told Bobcat that if I had ‘The Cancer’ I would move to Key West and live out my days in a combination of tragedy and hedonism. Painting in the day and partying at night. But mostly it was clear that I would avoid treatment. Especially treatment I perceived as invasive and inhumane.
No one in my family had ever had cancer. I had no reference point. So this brings me back to the subject of taboos. It’s so simple to illuminate the reality of living and healing a long term illness. We just have to talk. Openly.
So now a junior member of the Cancer Club I’m better equipped to disseminate only slightly exaggerated versions of how much fun I have in chemo daycare. And how hilarious was that day I reacted to my Procytex and just try to stop me from flashing my porta-cath from my right upper boob. You- that’s right YOU. Step this way. Don’t turn away. Now how Sexy is that? That’s a direct portal to my Remission Statement: What strikes the oyster shell doesn’t damage the pearl.
So in the afternoon, my dad and I wandered over to the Beacher Cafe for a snack. Bringing the bill, our pleasant server widened her eyes as she handed it over. ‘I don’t know what this means but it must mean something. You’re sitting at table 24. Your bill is $24.24. I’m not superstitious but it might be a message.’
At home this email from Dr Galal.
I have read your article in the Globe which was very moving, job well done. I just wanted to tell you that the rest of the protein workup indicated near complete remission. I’m thrilled to say the least.
thank you to all my fellow Yellow Diarists.
For all your messages that move marrow.