In Memory of Tom Jarrett

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I met Tom once. It was a cold December day in Bethesda, Maryland, when Tom and his family came for a protest they organized in front of the National Institutes of Health (NIH) Visitors Center. We didn’t get to talk much as we shivered and schmoozed with a few passers-by who expressed interest in the protest.
The Jarretts brought zero-gravity chairs to share with patients. Many of us suffer from orthostatic intolerance, so reclining is not so much a lifestyle choice as a desperate attempt to keep our brains working longer, and our heart and breathing rates down. After the protest, they offered me the one of the chairs. I gratefully accepted and used it in a later protest at the NIH, as well as at the #MillionsMissing protest in Washington, DC.
Tom died last week, and I hardly knew him. Many of us don’t know the fellow ME patients we mourn. Sometimes we’ve never met them. Others, we met once in passing at a long meeting or demonstration that left us in such a blaze of pain, discomfort, and exhaustion that our memories blur. I’m sorry to say I remember the cold better than any impressions of Tom. Now no one will have a chance to know this husband, father, church-goer, former financial planner, and ME patient.
And yet we know them well. We have had the same thoughts, feelings, and experiences, whether it’s being humiliated by a doctor, doubted by friends, or struggling to maintain relationships as bodies fail and minds fog up. We are members of a club none of us ever wanted to join. We are survivors, until we aren’t.
 

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4 thoughts on “In Memory of Tom Jarrett”

  1. Aloha,
    In memory of Tom Jarret is so beautifully written and brought tears to my eyes. Would love to learn more about him & others with this terrible disease who are fighting for all of us. A huge thank you to all of you and for sharing this story.
    Aloha

  2. joe, thank you so much for your wonderful piece. my love goes to tom’s wonderful wife and family. i loved seeing them all on his youtube videos. — rivka

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