First page of the poem titled 'Third persons' that reads: Third persons (a Myalgic Encephalomyelitis Awareness Month poem) Who are we waiting for? Who must we coax into zooming their attention on the facts of our broken bodies long enough for outrage to boil into full engagement: time, resources, voice. The third persons to tell the story we’ve been howling til our own cords tear, repair, then tear again, or whispering because our muscles cannot hold the volume of injustice. In the first person: our own details and in our third person: our friends’ details and the favorite birdsongs of those who’ve passed away after treading on quicksand, never to know the promise of acknowledgment (not even a cure, just less neglect), which seems sometimes in sight but perhaps a mirage. Sophia Mirza says “I don’t want to be a cautionary tale”
Second page of the poem titled 'Third persons' that reads: in the 2011 documentary Voices from the Shadows. Sophia Mirza died of M.E. in 2005. She was 32 and an artist who’d loved camping, recycling, yoga, who suffered (a verb carefully chosen) Severe M.E. and critically deteriorated after being forced into a psychiatric ward in 2003. Her post-mortem revealed dorsal root ganglionitis. Her last words, spoken to her mother, who’d asked about sharing her story to keep others from the same end: “Then it will all have been worth it.” We carry her loss, two decades ago, and dozens of blue roses. We add our endangerment— bodies allergic to life, life yet erupting— and tally the thefts: work, family, the five senses. Our particular griefs, we’re told, can reach foreign hearts, but so many insist on calling lived-experience unreliable,
Third page of the poem titled 'Third persons' that reads: as though the bias of inexperience didn’t permeate insidiously when fear and hubris lead. “Malingerers!” they print to keep non-nuanced viewers from knowing this too could be their cage. All suffering behooves us but furthermore: you too could turn into a heartsink patient, ruthlessly compared to buoyant peers. For media favors the feel-okay narration: individuals with promising new acts. If not recovery, then commendable adjustment: not training for triathlons but now a tai chi instructor in Tulum, forcibly retired but picks flowers with their labradoodle. And those of us still in the too-shrunk in-between (most verbs erased) with joys (sparrow at my window, cat who doesn’t mind my unwashed hair), remember the friends for whom a sunray or light kiss are torture, and wonder when our BED REST protests will attract beyond the fiends who insist: “Unalive yourself.” or less overtly: “Accept the wayside.” As if
Fourth page of the poem 'Third persons' that reads: for the Just World Hypothesis. We know too much. We tag along with tenured researchers investigating viral persistence, mitochondrial dysfunction. We beg doctors to follow patient forum models: open communication, expedited pattern recognition, full logging of adverse reactions. We try another off-label drug (with the necessary medical disclaimers) and risk sinking further. But the radio waves ignore us because the call has always required action. We’re owed attention, investment, justice, care. So I ask again: how many lab coats and sports coats (with lived-experience or otherwise) are necessary to spell out the catastrophe? What threshold of status or number of third persons will it take for the public to shift from not caring to exclaiming (like with every health scandal, like with all human horrors) in the passive mood: how was this ignored for so long?
Sharing my #MEAwarenessMonth poem. It's July, but the months, years, decades pass #pwME by, & the question remains.
#GreatestMEdicalScandal #MyalgicEncephalomyelitis
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