Sitting in window seat 24A on a return flight out of Washington DC, I feel myself coming apart. As the plane’s elevation climbs, my grip on my emotions relaxes just enough to let the trauma of the previous day’s events slip through—and I lose control.
The words repeating on a loop in my head: “ME/CFS neglect kills us.”
I had come to Washington for World AIDS Day where I had shouted those words from my wheelchair in a protest outside the White House. I had joined a group of HIV/AIDS, Monkeypox, COVID-19, Long COVID, and ME/CFS activists in a “die-in,” during which we lay on the ground in rows with mock gravestones at our heads. My gravestone read, “ME/CFS neglect kills us.”
Lying down in front of the Whte House was a public act of protest, so I had raised a clenched fist—in defiance. Now in seat 24A, this flood of emotions is a moment of private pain, so I let the tears come as I hold the names of the dead—in remembrance.
“ME/CFS neglect killed Heather.”
“ME/CFS neglect killed Harvey.”
“ME/CFS neglect killed Anne.”
“ME/CFS neglect killed Lara.”
“ME/CFS neglect killed Cindy.”
“ME/CFS neglect killed Lynette.”
I know many more, who I haven’t named, have lost their lives. I know that neglect has wounded many, even when it hasn’t killed. But these are my names; each of us has our own. The people whose spirits and stories I summon. The people who ground for me the reality of this collective trauma. This is not hyperbole. These are people I have known and cared for, and they should still be alive.
For a moment I feel lost in my grief, but then another battle-cry releases from somewhere above in my mind. Like an overhead oxygen mask I reach for it and slip the chant over my lips. I breathe the words deep and slow.
“Act Up. Fight back. Fight AIDS.”
In my mind, I can recall the exact cadence and pitch of the chant, cutting through the cold December air of the White House grounds. They are words of both call and response. I am no longer alone. I am in a circle surrounded by other activists, chanting together. Each of us have been brought here by different colliding pandemic nightmares. But we remind ourselves of our shared power and our faith in each other to keep fighting together. We will prevail. We will hold those in power accountable for the healthcare we need and deserve.
The fight for healthcare as a human right doesn’t end, but the circle expands. This World AIDS Day, I and other people with ME and Long COVID were embraced as we too joined the circle and drew strength from our common call to action.
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Our collective trauma is real, and we must name it. But in our grief, we remember that we are not powerless. There is always the invitation to action in collective struggle and solidarity.
Will you join us?
The 2022 World AIDS Day action outside the White House united people with HIV with chronically ill and disabled people with Long COVID and ME/CFS and others.