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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Severe ME Artists Project 2024
Quick Overview: Submit one piece of artwork – image, writing, or video Label your artwork with your name as you want it to appear, an underscore, and the number of years with severe ME Example: Lastname_FirstName_14 FirstNameOnly_ No copyrighted material If you are submitting a video, it must be under two minutes. Submission due by
4 thoughts on “In Memory of Tom Jarrett”
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
Thank you Tamara,Maybe others who knew him better could add an anecdote. Meanwhile, here is a link to Tom’s obituary for a little more about him:http://randallroberts.com/tribute/details/2692/Thomas-Jarrett/obituary.html Peace,Joe
You can learn more about Tom at his Caringbridge site, http://www.caringbridge.org/visit/tomjarrett
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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