There is this party line that people don’t die from mast cell disease. I’ve sifted through a lot of data in search of statistics on this topic. I haven’t found a lot that I find reliable. Some of the numbers are derived from one or two studies. Some of the data is really outdated. If it existed before tyrosine kinase inhibitors, I don’t think it’s particularly useful.
“You are a resource for a lot of people,” someone recently told me. “You write about dying and it scares them. You can’t be scaring them.”
I appreciate what she’s saying. But mast cell disease is already scary, and people are already scared.
I have a great friend with ASM. He has been through several types of chemo and is coming to the end of his options. Last week, he was told that he was dying. It was a reality we both recognized months ago.
I’m sick of hearing how rare ASM is in response to questions of life expectancy. People die from ASM, and these people don’t matter less because they are the exception. These are people, with lives and families and jobs. Their stories matter. They do not deserve less attention because their prognosis scares you.
You learn a lot about people from their secrets. The things we are afraid to speak lest we give life to them say so much about us. Over and over, from the deepest recesses of their minds, people bring forth to me this same fear: that they will die from mast cell disease. I feel like the collective consciousness of this community sometimes. I keep everyone’s secrets, and so I keep this one, too.
This one is easy, because I have the same secret.
Most people with mast cell disease will not die from it. But some of them will. Some will die from aggressive disease and some will die from organ damage and some will die from anaphylaxis.
When they die, there is this immediate need to identify the ways in which they are different from us. We cloak ourselves in these disparities, armor against the same fate. Grief ripples through the community, a few days of remembrance and then they are gone. These people exist only in our memories, where they dwell forever as incarnations of a struggle we hope we won’t lose.
Then time goes on and someone says, “Death from mast cell disease is very rare,” and everyone agrees, but all I can think about is those people inhabiting those memories and that maybe with a few changes I could be them.
Nobody lives forever.
I have never thought of Death as a person. Death is a place, one we all must visit. Like a strange customs office, or the shaded part of a woodland path that children invent ghost stories about. Not bad in itself, just bad because it is unfamiliar. Bad because those places are inevitably lonely, and we feel lonely when we think about them.
Losing someone hurts. Knowing you will lose someone – that hurts differently.
When I was in middle school, my class went to a cemetery to take gravestone rubbings. I don’t remember where it was, but I remember the rubbing I took. It was very tall. It marked the grave of a child and had angels at the top corners. It had the most beautiful poem on it.
Do not stand at my grave and weep.
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.
When I think about my friend telling me he is dying, I whisper to myself, “I am not there. I did not die.”
Most people don’t die from mast cell disease.