I'm not the best sister

Cynthia MacKenzie, a locksmith at Dana Farber Cancer Institute, published this story early in August, as she was preparing to ride in the Pan Mass Challenge. This is a bike ride that many of us have joined to support cancer research at DFCI. Although this year's ride is over, you can still contribute to it in Cynthia's name here.

When you grow up in a large family the responsibilities that come with each age are very specific. Rule number one: You always watch out for the ones younger than you. If my two younger brothers got into something on my watch, it was pretty much my fault. There once was a time that we rolled my younger brother Rob down a hill while packed inside a 50 gallon drum. To this day I can still hear my mother’s voice when she discovered he was a little bit unconscious after his ride: “You should have been watching more closely!” (I was the one who pushed it.)

Then there was the time we tickled him until he stopped breathing. I thought for sure we were bound to be goners if she found out we ended his life by tickling, but my mother just gave me a good tongue lashing: “You lead by example! If you do it your brothers are going to want to do it.” If he was to follow my example my younger brother would have loved women, but it didn’t work out that way. The children in my family turned out 2 for 7. That is 2 GLBT children and 5 "Straight" children. Where were our role models?

When Robert came out I wasn’t paying attention. He didn’t come out to me or to his best friend or to the rest of his family. He turned to men, looking for answers he had no one else to ask. It was the 1970s, and, in those days any gay social life came from the bar scene—hence the reason I know that disco is the music of my people. Imagine if bars and clubs were your only social circle. Is it any wonder, then, that gay people of my generation have a history of substance abuse and risky behavior?

My brother was found to be HIV positive in 1999, the year of my first PMC. I still hear my mother’s voice telling me to look out for him. In my memory I hear her at the end of her life, calling from the nursing home demanding that I fix the impossible. I can fix your door or change your locks or hang shutters, but I still cannot divert a hurricane.

In my mother’s last days we discovered among other things, that she had lymphoma. Cancer had metastasized to all her major organs. She was 75, an age that somehow no longer seems old to me. She wasn’t a sick a day in her life, nor did she ever see the point in yearly check ups. Not if she was well. She didn’t want to be a “burden on society” a tax on the system that she had contributed to her entire life through children and labor. And herein lies the rub. Had she had regular check ups, had she had a primary care doctor who advised her to have the most basic of cancer screenings, we might have intercepted and reversed the cancers that killed her.

I am not a very good sister. Nor am I very good daughter for that matter. How could it be that I work in one of the top three cancer hospitals in the world and yet my own mother escapes basic screenings? When I walk by the Blum van I could kick myself. Such a basic and elemental thing, the DFCI Blum van. Going into underserved communities and giving basic screenings—or at least raising awareness that it is a good idea to have check ups.

As my mother was dying, the last thing she said to me was that she loved my house. If you had said to me in 1975 that I would grow up someday, have a job where it is less of an issue to be out, have a house and a wife, and even a child, I would have thought you were crazy. Yet here it all is. A sequence of little miracles spanning the years.

My brother has zero T cells this month and I still cannot help him. I cannot ride like Lance Armstrong. Nor can I ride like Greg LeMond whose name is emblazoned on my shiny red bike. You can’t make me want to go to France, though my wife would be gone in a flash if (and when) given the opportunity. What I can do is work here. Fix the doors, make sure they close and open. I can participate in the ride knowing that maybe, just maybe the little that I can do adds to the greater of the whole. Research and clinical trials will continue. The Blum van will pull out of 44 Binney Street. We all might live longer and be healthy and happy while we are at it.