A poem before AKATHISIA had a name
The world doesn’t care, so you must. People closest can’t see the pain, the raging nightmare that is #AKATHISIA inside you. Even if they could, they don’t want to. It’s too terrifying and the demands are too great.
In case you’re wondering, yes. I think about giving up, every, single day. Giving up what? Infer what you will. But. I love Life. I loved it before, and I found ways to love it throughout, up until now.
And the moment you tell yourselves you’re all alone in this, whether true or perception, it becomes the most self-fulfilling prophecy you’ll create — and the most destructive.
Today, wallowing in my alone-ness, worrying I’m sick with #COVID* inflicted on me by someone close to me— despite #vaccination, despite extreme precautions since I’m high-risk — someone who sees the pain, knows the nightmare. Doesn’t matter, not really.
In the end, some things are unstoppable, others are not. It’s your job to figure out which is which.
So much of this, I hate to say it, is about our ability to walk through the fire because everyone has fire. I found out today that one of my favorite actors, Selma Blair, is living with multiple sclerosis.
She’s doing a wrenchingly candid film about it, hoping to show people her particular “human experience.”
Living with #AKATHISIA and other damage from prescribed medications is mine, yours, our human experience. Only being humane toward ourselves and each other will bring us closer to the edges of humanity.
That said, I tore myself out of bed and read the Times. I read about Lebanon. Much like my mother, telling me of starving children around the globe as a way to get me to appreciate my dinners, I urge all of those who have been harmed by #prescribedharm, disabled, suffered terrible loss, to read and get to know what’s happening in #Lebanon.
It changed my perspective and pulled me out of the darkness.
I wrote the following #poem (below) on July 7th, 2007. It’s an extremely bleak poem, but writing it pulled me from another dark place. That’s what writing, and reading, does. It extracts you from the terrible solitude, the isolation of #chronicpain, and affords you a different perspective, if you allow it, so you can trudge through another day.
Sometimes it helps to read about your own suffering through the words of a poet. I know there are those of you out there who hear my voice and resonate — that I sometimes write the words your own body screams. I want you to feel the truth of it — you’re not alone.
Charles #Bukowski wrote that ‘poetry happens when nothing else can.’
That was a deliberate choice for him and for me. A lot of other things can happen. I chose poetry then, I chose #compassion as I read about Lebanon. I choose life and #gratitude today. These aren’t banal platitudes coming from someone looking in the rear-view mirror at sickness and pain. I'm in the car with it.
But I’m trying to tell you — the way out of suffering is to suffer with your fellow wanderers. Do all you can to be with them, heart, soul, mind. Thanks to technology, a change of your own worldview is just a click away. Use this.
And so, that in mind, here is the poem that saved a single day for me over 14 years ago.
Peace out —
-by J.A. Carter-Winward
Something broke inside of me. One might think it
began with hairline fissures found cascading through
my ribs, sternum, and fingers, but no — a pressure had
built, just behind my left eye, leaving it to see only
monochrome and shadow. A grinding torture in my
sternum, as if God himself was using my solar plexus
to put out his cigar. It’s been, for over 2 decades, a
relentless deluge, a surging tide, pushing its way through
me, salt and sand, like brittle glass shards — they were the first
wave. Each day, as I went through the motions, they
chipped away — malevolent, unrelenting — at my resolve.
Soon, all that remained was a mass of confusion and ruin
with no pain-free breaths to speak of. Then the winds
took their turn and time with me, gusts thrashing my spine,
my neck, curling my toes and buckling my knees. This typhoon
wound ‘round my guts, lungs, and my throbbing heart,
choking them silent, extracting useless information through my
threadbare voice. The squall carried my vitals down-
stream to be scattered with other rubble and remains.
When, finally, the small fissures emerged, then grew into
cracks — splitting my mind and vision, scoring my resistance,
shattering my will into shards. Like anyone seeking
redemption for my unknown sins, I sought a savior to
salvage the wreckage, repair the damage, but it was done.
Though the tide had ebbed, and the wind had died, I am
derelict, abandoned. Stories of past-grandeur won’t be told
because there are none. I’m an off-the-beaten-path relic, a
place for ghost hunters and schoolchildren, wandering home
on amber-October afternoons. Diffused light beams housing
dancing particles run through me, but I’m an eyesore. Drafty,
hollowed and dry-framed, but under this husk, find the beginnings of
decay. My rafters hang and creak on unsteady joints as the
sea and wind call past me through tall grasses. I shudder, stubborn
in my spot, surrounded by nothing. The only passage left for me is
fire — it could start from outside or within, but either way my frame is
kindling. All that was human, all that remained flesh and softness was
eaten away so long ago that nothing remains of who I was, who
I could have been. One day — I pray the shamans will come and
sing over my bones — they’ll dance on me, burning sage purifying.
They’ll shake their rattles, singing hallowed night songs,
summoning the souls of the long dead — protective spirits,
dancing their circle around lost hope, frail and distant dreams,
forgotten loves and memory. I ask only that they tear me
down utterly so no revenant remains howling through the
boards. Ripped to shreds, slat by slat, bone by bone, then
slip me gently into the earth’s cradling embrace. I ask for
forgiveness from their gods — for the sea and wind,
for they know not what they do and I’m no more their
victim than so many left broken and ravaged in the
wake of a storm, perfect in its brutal destruction.
I was simply in its path. And so my greatest hope is that
those left behind will speak in soft voices as they pick
through these remains and remember, remember —
the way those before them remember — hold
vigil for these events we long to forget. Tales of
torment and defeat, inflicted by wind and
sea, by land, by time, and the endless
gods of indifferent suffering.
-July 7th, 2007