It’s only cancer. Let’s talk about it, openly

When, in July 2009, I was diagnosed with Multiple Myeloma, a cancer of the plasma cells in the bone marrow, I was told to keep this life-changing revelation to myself.

I was a high-profile personality in both Canada and India and the potential news of my entry into the ‘Cancer Club’ could have an impact on my career. I would also be exposed to relentless public scrutiny and a range of reactions from curiosity to pity and well, who wants to deal with that? Indeed, it is the emotional component of the disease that is really the most troublesome. Give me the drugs, doc, and I’ll lie in a dark room until I’m better. Or not.

This advice, I realise today, was shared out of a spirit of genuine concern, and I may have followed it had I not come across this quote by Susan Sontag on one of my many steroid fuelled sleepless nights:

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

This — the idea of becoming a citizen of the kingdom of the sick as a natural component of life — motivated me to examine my emotions, feelings and thoughts around becoming a cancer patient to such an extent that I started writing a blog called ‘The Yellow Diaries’ to chronicle my experiences in the Cancer Club. The point is not even what I did, but breaking the spell of silence around cancer.

I come across individuals — cancer patients and cancer Graduates as I call them — on an almost daily basis in India where I now live, who want to talk. Sometimes it's questions like, ‘how long did it take your hair to grow back?’ (Around nine months) or ‘do you feel fear before every checkup and blood test?’ (Yes!) or ‘do you take wheatgrass juice?’ (Yes, occasionally, and yes, it makes me gag)

Inevitably it comes out that there is no one else to talk to about these everyday concerns because the diagnosis is a secret. No one outside of immediate family knows.

This impulse to treat the subject of cancer as taboo is mind boggling. There is an emotional component of healing which cannot begin to be addressed until we speak openly, share our deeply human experiences and in this help not just ourselves, as cancer patients, but inspire others.

There is nothing to be ashamed of, except the compulsion of society to project shame and dread onto cancer patients. Cancer is a profoundly frightening disease, but it does not naturally translate into death particularly with all the new modalities of treatments and preventative measures in our world today.

We need to talk. Openly.

In case we need even more reasons to break the code of shame and silence around cancer, here’s what I wrote in my blog in August 2009, just a month after getting diagnosed: “I’m writing this blog. I’m not sure why and that’s probably the best beginning. Many people become members of the cancer club. Loads of actors and artists struggle with a the capricious nature of our business. There’s lots of ‘coming home’ stories out there.

“Maybe I’m just finally listening to my marrow. I asked around if I should speak openly about getting diagnosed recently with Multiple Myeloma. Some advised me to keep my ‘condition’ a secret as it could negatively affect my career. Buh? I’m plumper, redder, more energetic and wily than ever before. Kiss me like I’ve been kidnapped!”

Tara Maclean, surrogate sister and super talented singer, talked about how the role of an artist is to use every experience- especially the painful ones — and transform them by sharing.

Laura Simms, my NY-based professional story teller/surrogate Jewish mother, highlighted the ‘pathology of perfection’ which we suffer from in this age. How celebrity culture and media create unrealistic expectations in ourselves and others and how perhaps sharing my experiences in preparing for the Toronto Film Festival juxtaposed with my ongoing chemotherapy and treatments could inform and loosen these expectations.

Ted Grand reminded me of the power of community and interconnectivity. Ted’s the founder/director of Moksha Yoga and introduced me to the concept of Sangha, or a community, with a common vision or purpose. Like on the days when your ‘yellow’ wattage is low and the chemo makes you feel like a nauseous mound of subcutaneous fat, well, it’s good to know that there are others feeling shitty in ways which only the Sangha can understand.

Then there is no getting around this message from Martha Katherine Smith Macgee: “My husband has Multiple Myeloma. If we had not had Myeloma Awareness and donations in the past, he would not be here after nine years and nine months. Thank you for what you have done and will do for Cancer Awareness.”

Let’s TALK.

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