Poetry saved me once thirty years ago when CFS laid me low. So low, I could no longer stand, sit up, kneel, walk nor talk. In fact, speech made no sense to me. When others spoke I heard noise, not language. Exhaustion over took every cell and the energy needed to operate cell function. It was an “all systems fail” experience that lasted for decades. Speech slowly returned after several months, as bits and pieces dropped from my lips, grammar-less and word substitution raising eyebrows when I attempted communication. It took one and one-half years to complete a single Easy Crossword puzzle. One puzzle, not the entire book. I relearned numbers and their relationships playing solitaire as I lay in bed. I learned to stand, then walk again; first with a walker, then years with a cane. I learned to read and write again, haltingly at first.
Poetry saved me. It gave me my first words. One morning I woke and picked up the empty journal by my bed, lifted the pen by its side and for the first time in more than a year I wrote nonsense for two pages until a poem suddenly appeared. This is the poem:
Snippets
like puppets
of the imagination
strung together
in the mind,
all mine.
With you they dance
in the breeze
of conversation.
Disjointed,
unanointed by grammar.
Flailing, distracted
emotion woodenly enacted.
Words tossed
together and apart
from the wound that is my heart.
what a performance!
I walk without aids now, 1-2 miles at a time. I garden. I paint. I write a blogs of poetry, commentaries, political essays. Before health restricted my ability to engage in personal contact with others I was able to be socially and politically active, personally. Now, I rely on words to show love and move others to action. Words I once lost are now my only connection to a fully lived life.
I worry for Covid long-haulers and what they will go through. At least they will be believed. Those of us with CFS(sometimes called ME, CFIDS etc) have seldom been believed. Only within the last year has my illness been given an ICD code although it has been a recognized disease by the CDC for decades. The reason this happened is because researches recognize the same symptoms in Covid long-haulers and thought it prudent to look at those with CFS. However, no data was organized enough to research since without an ICD code there was no effort to track patients like myself. Our medical histories are hidden and untraceable. My records will show only “easily fatigued.” That is the least of the symptoms; the result of the struggle against the underlying systems fails. Fatigue is not the disease itself. My hope is that we will not dismiss nor diminish the long-haulers who seek medical care in the decades to come. My hope is they will find the words needed to connect them to more fully lived lives. Life is good. The struggle is worth it. I pray they never lose hope. I pray they find the poetry of their lives.
annarino writes 
THE LONG HAUL
Poetry saved me once thirty years ago when CFS laid me low. So low, I could no longer stand, sit up, kneel, walk nor talk. In fact, speech made no sense to me. When others spoke I heard noise, not language. Exhaustion over took every cell and the energy needed to operate cell function. It was an “all systems fail” experience that lasted for decades. Speech slowly returned after several months, as bits and pieces dropped from my lips, grammar-less and word substitution raising eyebrows when I attempted communication. It took one and one-half years to complete a single Easy Crossword puzzle. One puzzle, not the entire book. I relearned numbers and their relationships playing solitaire as I lay in bed. I learned to stand, then walk again; first with a walker, then years with a cane. I learned to read and write again, haltingly at first.
Poetry saved me. It gave me my first words. One morning I woke and picked up the empty journal by my bed, lifted the pen by its side and for the first time in more than a year I wrote nonsense for two pages until a poem suddenly appeared. This is the poem:
Snippets
like puppets
of the imagination
strung together
in the mind,
all mine.
With you they dance
in the breeze
of conversation.
Disjointed,
unanointed by grammar.
Flailing, distracted
emotion woodenly enacted.
Words tossed
together and apart
from the wound that is my heart.
what a performance!
I walk without aids now, 1-2 miles at a time. I garden. I paint. I write a blogs of poetry, commentaries, political essays. Before health restricted my ability to engage in personal contact with others I was able to be socially and politically active, personally. Now, I rely on words to show love and move others to action. Words I once lost are now my only connection to a fully lived life.
I worry for Covid long-haulers and what they will go through. At least they will be believed. Those of us with CFS(sometimes called ME, CFIDS etc) have seldom been believed. Only within the last year has my illness been given an ICD code although it has been a recognized disease by the CDC for decades. The reason this happened is because researches recognize the same symptoms in Covid long-haulers and thought it prudent to look at those with CFS. However, no data was organized enough to research since without an ICD code there was no effort to track patients like myself. Our medical histories are hidden and untraceable. My records will show only “easily fatigued.” That is the least of the symptoms; the result of the struggle against the underlying systems fails. Fatigue is not the disease itself. My hope is that we will not dismiss nor diminish the long-haulers who seek medical care in the decades to come. My hope is they will find the words needed to connect them to more fully lived lives. Life is good. The struggle is worth it. I pray they never lose hope. I pray they find the poetry of their lives.
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Filed under COMMENTARY, POETRY
Tagged as CDC, Covid, ICD codes, long haulers, ME, poetry, recovery, rehabilitation