Eight years ago at age 61, my ME/CFS began. I was never sure what caused it. My bloodwork showed I had a mild case of Mono at the time. I was tired, but didn’t know I was sick. I kept on working at a very high powered job until the illness made it too hard to continue. Like so many of us CFS patients, I saw many doctors, homeopaths, and specialists, non of whom could tell me what was wrong. As the disease progressed, I also developed POTS syndrome. Today at 69, I function at about a 4 or 5 on a scale of 1-10. I take a drug called Armodifinal, which gives me a window of about 5 hours in the early morning to write poetry and reach out to my friends. I have not allowed myself to lie in bed, but have chosen the recliner and the sofa as my afternoon and evening home.
Last night for the first time, I watched the documentary UNREST. This prompted me to get involved. I was stunned and horrified by the brave young woman and men participating in the film. I immediately wrote to my family and physician to watch both the documentary and the UC Berkley School of Health/ CFS panel YouTube discussion of current research on this debilitating and devastating disease. I want to be a part of this initiative, and though I don’t expect to see a cure within my lifetime, while I’m here, I won’t to make a difference in the lives of CFS sufferers as well as in the lives of those who will develop this condition. My greatest contribution may be my poetry:
Her body is a stranger now, a slow ceremony of losses.
She lies a stiff wire, stretched long, and solitary on the old blue chair—
Thoughts recede in fog,
loneliness takes over.
Through the glass, the world gathers itself away.
She watches snow, the burning green,
the shifts in light as seasons pass, as in a closet,
put themselves away.
Her body, empty and unshivering, absent in all.
She thinks, my dust is coming and
does not take; there is no having back.
Should summer wind the bell, the swallow,
call her back upon its blue open hand,
she cannot take,