Touched by cancer

LGBT communities talk about death a lot. Our communities mostly talk about death in very specific ways: HIV/AIDS, bashings and suicides (oh my). Five hundred twenty five thousand six hundred minutes, Harvey Milk, and Brandon Teena. When I think about LGBT communities and death, those are the associations I make. Cancer was never one of them. I was 27 before I took my first plane ride, 32 before I went to my first bathhouse, and I must be the only person on the planet who hasn’t directly been touched by cancer.

Until now.

I did the InsideOut Digital Video Project over 10 years ago. I remember one day hearing a boy in the group say that he assumed he would get AIDS, and that he practised unsafe sex because he just wanted to get it over with, learn to live with AIDS instead of perpetually living in fear. That really stuck with me. I remember hearing a woman say the same thing about rape and the risks she took. I should live one day at a time, according to fridge magnets, but how do you do that when you don’t know what you’re dealing with, how long you or the ones you love will be here?

I am constantly struggling to balance planning for the future with living in the present — macro and minute details, and I’m fiddling with the lens. Who cares about credit when you could be dead tomorrow? But who wants to live with massive debt if you survive? Once our lives have a timeframe, this fuzzy picture we have of existence suddenly comes into focus. Now you can clearly prioritize, make an informed decision about how to portion out the rest of your time. This is the life you are working with.

Cancer is such an abstract thing at the beginning. You can’t see it. You often find it by accident, sneaking around the body like a slow leak in an old pipe. I do little things every day to avoid something that wasn’t even real to me until now: don’t microwave plastic, don’t use the metal spatula on the Teflon pan, put on sunscreen, don’t sleep with your cellphone under your pillow. Now cancer has officially entered my life, in the form of a little tumor in a little brain that can’t be taken out or fixed or denied. If ignorance is bliss, then knowledge is a bitch. This little tumor, forever changing the lives of so many people, is what it is, regardless of how any of us feels about it or how much we fear it.

There is a ball of fear that lives in my chest, and thoughts can trigger it — abandonment, loss, grief. I practise keeping it down, allow it to roll up and take me over for limited windows for a limited audience. It is a roommate to my depression, which lurks lower, in my stomach. My most familiar experience of grief is the particular kind associated with sudden death. I know sustained grief in the presence of older people, their mortality painful but expected, and reasonable in the context of everyday life. Cancer is different: it demands pushing down the ball temporarily while you feel it at the back of your throat and anticipate its resurfacing. It demands functional grief, practical grief, educational grief. It demands joyful grief.

Gracie is three. She witnesses death daily — insects, squirrels, flowers. It is so much a part of life that it is impossible to avoid. We are starting to explain it to her: what alive means, what dying means, what she is going to witness in this person she loves so dearly. We ache all the time; we never wanted her to know so early that there is an alternative to having the people you love around all the time, that it is possible for them to go.

I am hoping that her lack of capacity for the understanding of permanence means she has a greater understanding of the universe than we have. The death-and-dying specialist we spoke to said death is heartbreaking, absolutely heartbreaking, but it doesn’t have to be traumatic. I am clinging to that statement and hoping we can find tools, and share them, that will strengthen all of our hearts. I am hoping we can nurture a small healthy scar on Gracie’s still small heart that will hold good, good memories for a long, long time.

Weekly, probably partially as a result of OCD, I think to myself, What are the odds that I would lose a child in my life twice? I was feigning protection, having already lost one, thinking I must have learned this lesson already.

Until now.