Things die in the fall. It is both my favorite and the worst thing about this time. The scientist in me knows that these little deaths nourish the environment so that one day all of this can be born in me. The mast cell part of me is reactive. We don’t call it Shocktober for nothing. And the human part of me is sad. It’s hard to find the same beauty in stark branches and grey skies and I know that is coming.
We are living through a season in the mast cell community, a different kind of dying season. On a weekly basis for the last two months, I have logged onto social media to discover that yet another mast cell patient has died. There are varying causes of death, including complications of anaphylaxis, organ failure, complications of treatment, and suicide. And it has now been a year since my friend, Ginger, died suddenly.
I have gotten messages from several newer patients asking if this frequency of death is common for mast cell patients. It’s not. They are understandably alarmed at the number of people in our community who have died recently. I am alarmed. Watching your friends die never gets easier. There is no amount of expectation that can blunt the pain. There is no way to prepare.
Spending time in this space feels dangerous. It is not safe to linger here.
I have never stopped being affected by the deaths of mast cell patients I only knew casually. Even if you weren’t close to someone who has died, even if the only link you have is that you both have a common rare disease, you still feel it. You are bonded to the people who understand your suffering. We are part of the same whole.
I have seen a few people express concern that over time, these people will be forgotten. They will not. I remember the name of every single mast cell patient that has died since I joined the community several years ago. I remember the shock I suffered when I learned about each of them. So will all of you.
These people are gone now. There will be no vibrant resurgence in the coming spring. But they were people with lives that touched others and living in the love those people carry is a kind of rebirth. Those people will remember the ways they are changed by having known this person. They will remember favorite things and inside jokes. They will remember goals and aspirations and hopes and faith. They will remember better days.
I want you to remember that the people who are gone can never be completely lost to us. That the things they breathed into the air linger still. That when you breathe, you are breathing them in. This world has been marked by their presence, both physically and emotionally. It has literally been changed in a way that is individual to each person. And because of that, they will never be forgotten. How could they be, when they helped to build this world?
There is a poem about death that has always resonated with me. My instructions for my funeral, hopefully many years from now, include this poem being read.
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.
-Mary Elizabeth Frye
Be kind to yourselves. Take care. This season will end.