25 things, post-election:
- Normally I shy away from posting anything too personal, but this time isn’t normal.
- A year and a half ago I was diagnosed with MS.
- My professional life came to an abrupt end.
- Thanks to the Affordable Care Act, I currently have access to health insurance.
- The medication I take to slow the progression of my disease costs $65,000/year.
- A drug that has been used for years to treat cancer and rheumatoid arthritis recently showed promise for treating MS. That drug was not brought to market because the patent was about to expire.
- I have profound hearing loss.
- Hearing aids are not covered by most insurance companies (hearing aids are considered elective).
- Healthcare should not be driven by profit motive.
- Neither should education.
- I became a teacher to help young people find their voices.
- I became a writer to find mine.
- “… it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature … literature does its best to maintain that its concern is with the mind; that the body is a plain glass through which the soul looks straight and clear.” – Virginia Woolf, “On Being Ill”
- On a Saturday night the spring before last, I suddenly lost vision in my left eye. Everything went dim, grainy, colorless, as if the brightness, contrast, and color knobs had been turned all the way down.
- A few days later my right leg went numb.
- Before MRI machines, a hot bath test was used to diagnose MS (heat worsens neurological symptoms).
- On a trip to Paris several years ago, I visited the library of Dr. Jean-Martin Charcot, who is most famous for his study of hysteria.
- Charcot was the first to give a name to multiple sclerosis: “la sclérose en plaques.”
- Sclerosis means hardening. It refers to scar tissue formed by lesions of the brain and spinal cord.
- Nothing is in my control.
- My body feels unsafe. I have been hurt physically and sexually.
- “Everywhere in the world they hurt little girls.” – Cersei Lannister
- My parents were Sufi. Sufism is a branch of Islam.
- My given name is Arabic. It means light of womanhood.
- I am not a terrorist.
Noria Jablonski is the author of the story collection Human Oddities (Counterpoint, 2005).
Photo credit: Connie via a Creative Commons license.
My dad had MS — and my first caregiving client — this really touched me. Sending blessings …
Thank you for sharing your list.