restricted access Living with Blindness and Fibromyalgia while Occupying Aging
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Living with Blindness and Fibromyalgia while Occupying Aging

I’m blind from birth and in middle age developed fibromyalgia. I’ve retired from a thirty year career as a clinical psychologist and am working on my third book tentatively titled “Occupying Aging: Delights, Disabilities and Daily Life.” My relationship with medical professionals includes gratitude (without good care I would not be alive) and also frustration for assumptions often made about my abilities. I write from the perspectives of an impatient patient, woman living in the United States, former provider of mental health services, person with both invisible and visible disabilities, and boomer moving into the world of the aged. My stories are mine of course, but when I swap medical stories with blind friends, similar happenings abound.

When my mom fell down the stairs at a friend’s house, five months pregnant with me, she was told to go to bed for the next four months to save the pregnancy. Thus began the impact of health care professionals on me. I was born a month premature and spent my first month in an incubator. In 1949 it wasn’t known that the enriched oxygen atmosphere in an incubator would cause blindness. At least one lawsuit was filed against physicians and a hospital by a person blinded in this way. A large out–of–court settlement was received. The way I look at it, the health care community did the best they knew and without enough oxygen, I would have died.

Early in my life, my parents took me to several ophthalmologists to see what could be done for my vision. Family folklore has it that I could smell a hospital as we entered and would begin howling. These early traumatic experiences may have led to my current healthy lifestyle so I don’t have to go to doctors much now. By about age five, it was clear that nothing could be done about my vision. For the next twenty years my forays into the health care system were for tonsillitis, sprains, and the usual childhood ills.

In my early twenties, I developed acute glaucoma in one eye—caused, I’m convinced, by birth control pills. In seeking treatment for this condition, I encountered the first truly insensitive physician I’d met, who said, “Your eyes aren’t doing you any good; let’s take them out.” I was horrified! They were my eyes. I was attached to them, psychologically as well as physically. It turned out that a simple operation relieved the pressure and allowed me to keep my eyes. True, they are not the best looking big brown eyes around, but they did come with the package.

Life with blindness seemed quite straightforward until my early forties, when I developed extreme fatigue and pain all over. I was worried. I knew a blind woman who had developed multiple sclerosis and I admired her, but I did not want to walk in her brave footsteps. Then a college student came to see me with the same symptoms and said that she had recently been diagnosed with fibromyalgia. I am often very empathetic with people’s concerns, but this time she complimented me by saying, “You’re great! You seem to know just how I feel.” I sagely counseled her about portioning out her energy carefully, prioritizing, using short cuts, and taking elevators when possible. Being an adult [End Page 216] student used to overachieving, she did not like what I was saying, but said she’d try to follow my advice because she could no longer do it all.

What finally broke through my own denial was the day coiling up a hose and dragging it to the basement for the winter took me an hour. It left me totally exhausted and I figured that even being middle aged couldn’t account for feeling that awful.

After a thorough physical and plenty of blood work to rule out Lyme disease and multiple sclerosis, I was diagnosed with fibromyalgia and placed on low doses of antidepressants to help me sleep through the night. The medication worked and I began to feel like myself again. My battle to accept that...