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My Mom Is Limited By A Disability, But She Still Shows Up In All The Ways That Matter
Sunday 10 May 2020
From US newspaper The Washington Post:
My mom is limited by a disability, but she still shows up in all the ways that matter
“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.” — Oliver Sacks
“I’ve had this dream,” my mom tells me as we sit in side-by-side lawn chairs beneath an autumn sun, “that one day I would put on an elegant black dress and go out to dinner with my husband. Not out of delusion; I just believed that things would get better. I had to believe that things would get better.”
“I still picture that,” she continues, her voice lower. “Every detail: the table, the napkins. The waiter carries us bread and butter, and we’re laughing.”
I always knew that my family was different. In elementary school, when teachers asked me and my peers to share our parents’ professions; at high school functions, when everyone asked why my parents hadn’t shown up; as I processed through an auditorium in cap and gown at my college graduation without a proud parent in the audience.
“I have a stay-at-home mom,” I learned to share as a child.
I have a stay-at-home mom. But she does not stay home by choice.
My mom was 24 when she was diagnosed with chronic fatigue syndrome, more recently termed myalgic encephalomyelitis — a frequently misunderstood disease affecting the neurological, immune, endocrine and metabolic systems. Just months into her first year of teaching at a local elementary school, a seemingly viral sickness pummeled her body and persisted. It was as if she caught a flu that never went away.
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