Poetry, the words penned on this blog, have emerged as a gift from the darkness of a debilitating disease.
Three years ago, I was a special education teacher, loving my career, volunteering with the junior girls’ basketball team, and making plans with my husband for our next trip. I had been diagnosed with Fibromyalgia in 2010, but a change in diet and weekly trips for acupuncture seemed to keep that at bay. True, I could no longer participate in the acting group I’d so loved, or play tennis quite as actively as before, but that was compensated for by the arrival of grandchildren in our lives.
Then, in the middle of summer, 2013, I came down with pneumonia, and although my lungs seemed to clear with the prescribed medication, I continued to have breathing problems, accelerated heart rate, and bouts of severe dizziness. I saw specialist after specialist, all with differing opinions, and then, thankfully, my respiratory doctor diagnosed Chronic Fatigue Syndrome.
“Myalgic Encephalomyelitis” is the formal term, my family doctor explained, although most recently she told me it’s been renamed Central Sensitivity Syndrome in an attempt to explain the varying complex symptoms.
By May of the next year, I could no longer drive without falling asleep at the wheel; had lost my ability to do math; was losing recognition of words; and could not climb a flight of stairs. Sitting and standing became incredibly taxing, and at my very worst, I could not tolerate food – ugly sores would break out in my mouth and face, and my stomach would swell painfully.
Social interaction was exhausting, and watching television overly stimulating. I spent hours on end lying in a darkened room in silence. Scents were enough to send my nervous system into overload, and sudden noises made me startle like a baby. I could not concentrate enough to read .
Words were my saviour. Ideas floated around in my consciousness, forming images that I would cling to until I was able to find the words to release them. Poems, like shining beacons of hope, emerged, and I felt brief interludes of accomplishment, as if my life still mattered, as if I still had purpose.
This past year, there has been improvement. I am able to be out of bed longer, and with the help of a homemaker, can even prepare a few meals, and best of all, get out of the house to visit with friends, or have a meal out.
I came across this Ted Talk this morning, posted on Facebook, in which the speaker reveals her journey with ME. An articulate speaker, Jen Brea has become an active voice in the crusade to bring this disease to the forefront of medical awareness.
I invite you to watch Jen Brea.