What Does it Mean to be Sick?

When I was diagnosed with Hodgkin's Disease, there were a lot of things that I wanted to learn. In addition to educating myself about the disease, I wanted to understand more about what it meant to be sick in general, and to have cancer in particular. There is a whole language associated with having cancer that reveals how emotionally charged and socially constructed it is. You hear about someone's "battle" with cancer. The person who has it is admired for being "strong" and never complaining and "fighting" through it and is often considered a "survivor" whether or not they survived and whether or not they are cured.

I was already beginning to feel the stigma associated with having a disease like cancer. One or two well-intentioned family members advised that I keep very quiet about my diagnosis and that I should limit the number of people who I told. In their view, there just wasn't any need for colleagues or acquaintances who didn’t really care about you to find out and to start gossiping. There was a concern that these people would then see me only as the one dimensional "sick person" rather than as "Andrea".

When it comes to cancer, there is just such a range of perspectives and beliefs. Some people, whether consciously or unconsciously, even feel that reading an article or seeing a movie about someone who is sick could bring on bad luck, or that cancer is somehow contagious and that you might "catch" some terrible disease by being around someone who has it. This is sometimes called magical thinking. I for one have skipped reading obituaries due to a very irrational fear that they would somehow result in bad luck. (So much for that theory...)

There is certainly a tremendous, raw sense of fear, partly rational, and partly irrational, that a great number of people associate with the disease. Cancer is associated with many scary things, like chemotherapy and hair loss. Oh yes, and death.

So I set out to learn about different perspectives on what it means to be sick. As it turns out, there is a whole area of anthropology devoted to this very topic, referred to as medical anthropology. I went to various McGill libraries and loaded up on textbooks and papers, which I found to be interesting although perhaps a little too dry and scientific at times.

I next turned to bookstores and always beelined for the cancer section. I wanted to read about people's experiences with cancer in order to try and contextualize my disease. I read Dr. Marla Shapiro's candid account of her battle with breast cancer in Life in the Balance . I read John Robert McFarlanes touching, even charming stories of how cancer has changed him in his book, Now that I Have Cancer I Am Whole.

I also tried to prepare myself for what lay ahead and to gain a better medical perspective on cancer.
My all time favourite book in this category was, without a doubt, Chemotherapy and Radiation for Dummies. I also read Cancer is a Word, Not a Sentence: A Practical Guide to Help You Through The First Few Weeks . The main thing that I got out of this book is that "cancer" is a misnomer. In fact, there are disparate kinds of cancers and they are each vastly different diseases. Lumping them all together is like lumping all viral infections together, from the common cold to HIV. If "infection" were a term as loaded as cancer, then it would be hard to cope with hearing that you had an “infection”, even when all you have is a cold.

I do think that the author, Dr. Robert Buckman, makes a valuable point. But at the same time, there really is something concrete that binds together most cancers, and that is how they are treated. There is a real bond you share with others who have gone through chemotherapy or radiation. And so, there is a veritable culture that has developed around cancer. There are sub-cultures for survivors, and for their family members, for children, young adults, and for women. The list goes on. And then there is the culture of cancer that has permeated society as a whole. There are pink ribbons and yellow bracelets and runs for cures and enumerable charitable foundations.

From time to time, I planted myself in a little corner of the cancer self-help section of Chapters and Indigo and read excerpts of many other books, for as long as I could in a single sitting until a dutiful bookstores employee asked me, as politely as possible, to stand up as I was not permitted to read on the floor. (How annoying is it that there are so few chairs in bookstores? But I guess that's the whole point - they aren't libraries).

Along my literary journey, I learned so many interesting perspectives. I encountered the feminist photographer Jo Spence, who used phototherapy (literally using photography to heal) to document her experiences as a patient with breast cancer. Some of her views were a little too extreme for me, but the point is that she presented her disease as a social experience.

I watched the documentary, Crazy Sexy Cancer, about a young woman, Kris Carr, who is diagnosed with an incurable type of Stage 4 cancer, and as she notes, there is no stage 5. Kris sets out on a journey into alternative medicine, and discovers various treatments, some helpful, some counterproductive, and some plain wacky. She meets fellow survivors along the way, including Glamour editor Erin Zammett Ruddy, who has leukemia but was able to control it by taking a drug called Gleevec. She makes the difficult decision to go off the drug in order to get pregnant, and we find out from her blog that she ultimately gave birth to a gorgeous baby boy. But lightening struck twice when Erin's sister Melissa was also diagnosed with a blood disorder - Hodgkin's. I had read about Melissa's story before the documentary came out and we actually exchanged a few emails when I consulted her about radiation. She was incredibly compassionate and responsive.

I also went to an amazing young adult cancer support group in Montreal, and in our sessions have cried but have also laughed very hard. I approached the first session with a great deal of trepidation and uncertainty (what would these people be like…? Oh yes, I was one of them…), but since then have felt tremendous warmth and camaraderie from the group.

So, what does it mean to be sick? What does it mean to have cancer? It means a lot of different things to a lot of different people. It means that life is fragile. It means sleepless nights. It means pain and it means that wounds heal. It means that life is not always fair, and that you sometimes end up in a club that you didn't ask to be a part of. It means summoning inner strength and courage and discovering there are reserves of it deep within. It means that some people care and some don't. It means get well cards and telephone calls and packages and lunch dates. It means love and fear and compassion and reaching out. It means finding what you need from the most unexpected people and places, and being able to give in the most unexpected ways. It means hope and faith. It means that we are all going to die and it can mean a new lease on life. It means treatment and support and self-healing. It means acceptance and it means fighting back. Perhaps it comes closest to being a microcosm of life, of experiencing life in its most concentrated form with all of its ups and downs and lows and highs.