October 7^th, 2001 – The Wedding, War and Frank Sinatra (5 months after diagnosis)

It’s October 7th and I’m standing in the rain, crying. My husband and I flew out to Vancouver to attend a friend’s wedding. Over 100 people arrived at this exclusive clubhouse in celebration of their union. But underneath the pink icing and bubble confetti is another reality – our friend’s father is dying of cancer and they hope he will make it through the evening to see his son wed. On this same evening, the United States has declared war on Afghanistan.

I’m outside on the patio, looking out over the soft, green lawns and I marvel at how peaceful everything looks. I cried through the wedding vows, not out of joy, but because the emotion of the moment stirred up other emotions deep inside me. I cried for my friend’s dying father, for the injustices of war, and for my son who may never experience the joy of marriage. Inside, Frank Sinatra’s My Way booms through the clubhouse halls. It was my father’s favourite song and I cry some more.

Last month, the World Trade Centre was demolished. My son and I watch it unfold, holding hands tight. Things changed that day, for the world, and for me. Suddenly, I wasn’t alone in my grief because the attacks on the World Trade Centre had created a grief greater than mine, and it eased my own pain. I was experiencing schadenfreude, a natural human reaction which refers to the embarrassing spasm of gratitude we feel when something bad happens to someone else instead of us. It makes us feel safe, like when you hear of a family involved in a terrible accident, and you go home to your family and say, “We can’t complain, did you hear about so-and-so who died in that awful accident?”

With my son’s diagnosis, my family had become ‘that family’, the one everyone measured their luck by. It was a yardstick I didn’t want to own, but was to be played out for many years to come.

The terrorist attacks created a public grief, but my grief remains a private one. While strangers all over the world reach out to victims of terrorism, I am hard pressed to get a neighbour to cross the street to see how we are doing. When my husband took a job up north for the winter, I thought ‘surely our neighbours would come and help me shovel the driveway, or see how we’re doing’. No one came. I felt confused and angry. “Why won’t they reach out to help us?” I often asked my husband. “They know about Tristan, don’t they care?” It would be some time before I understood their silence.

Several months later I was watching a show on the families of victims lost in the September 11th attacks. A well-known TV psychologist was urging the family of one distraught woman, whose husband had died, to not pull away from her. “Often times when we say, ‘Oh, I went to visit so-and-so today and she’s doing much better,’ what we’re really saying is, ‘She didn’t make me feel uncomfortable today.’ It lets us off the hook.” Now I understood. My son’s diagnosis made people uncomfortable. We had become a reminder of what could happen when you’re looking the other way.

I’m learning to settle my anger, but it’s a slow process. Our family’s struggle with muscular dystrophy has caused a sifting out of people to one side or the other. On one side are people who stay tight within themselves. I am learning to let them go with love. On the other side are the people who offer help without being asked, who want to learn everything they can about the disease, and who want to know what their role will be. They listen to our story, and when I scream, they know my anger is not directed at them, but is rather a mother’s anguish at losing her only child.

Out on the patio, the rain continues to gently fall. Inside, Frank Sinatra is singing my father’s favourite song, My Way. I start to cry. I miss him. I wish he could wrap his arms around me and tell me everything was going to be alright.

Excerpt from One Rep at a Time – by Karen McCoy