Friday, February 13, 2009

A Valentine's Day Tribute to Rayilyn Lee Brown

Shown above with her faithful sidekick Spike, Ray is a familiar presence to members of the Parkinsns listserve. With her research partner Diane Wyshak, Ray keeps the list informed of developments affecting the Parkinson’s community. Ray is a director of the Arizona Chapter of the National Parkinson Foundation.

Ray’s kindness and encouragement help get us through; her candor makes us think; her sense of humor makes us laugh; her sense of outrage gives us energy; and her tireless advocacy gives us hope. Thanks, Ray.

10 things you should know about Ray

1. Ray was named for her dad.
Here’s how she tells it: “My Dad’s name was Ray. When I was born my Aunt Lois was in high school writing Carolyn, Marilyn, Rayilyn!! My parents liked it but it has given me nothing but trouble trying to explain it. I’ve been called Raylyn, Raylon, Raylene, Rayiteen and my brother called me Rayloon. Going by Ray is easier and that started when I was teaching and a colleague called me Ray.”

2. Ray was once a shrinking violet.
In her words: “I was very shy as a young person. As a graduate student I used to get headaches in seminars because I wanted to say something but was afraid.”

3. Ray is a retired high school history teacher and a lifelong history buff.
When she was in third grade, Ray discovered a book about the ancient Greeks. The rest is history. Here’s Ray on her life in teaching: “My 30’s and 40’s were the best times of my teaching career. It was truly Camelot-magic. Students of all races and creeds arguing the various interpretations of history made for exciting, outrageous classes. My students not only became successful professionally, but personally are great people. Some are still in contact with me. One does Parkinson’s research at the U of Pittsburg.”

4. Ray has plenty of practice fighting nasty diseases.

Ray navigated abdominal surgery in her 30s and ovarian cancer in her 40s.

5. Pre-PD, Ray was a woman of unusual neuromuscular prowess.

Ray liked to dance, play golf, bowl, decorate, paint, garden, travel, and play the piano. She cruised the high seas and had many high adventures. And she typed 100 wpm.

6. Ray was born and bred a Republican.
Here’s what Ray has to say about her political conversion: “The biggest event of my last act has been becoming a Democrat after being a born, lifelong Republican from an active political family. Most people, I understand, become more conservative as they age. However, I don’t think any of my positions have changed (the GOP left me) except for ‘war.’ Teaching about its causes for so many years has turned me into an old ‘peacenik.’”

7. Ray is a philosopher.
She says: “I was a philosophy minor in college and tried to develop a philosophy of life that accounted for how life treated everyone, not just a few healthy people. So when I was young I volunteered to work in a spinal cord injury ward in Long Beach CA. My stint didn’t last long because I couldn’t handle it. Years and diseases later, I’ve toughened up and really hope that I can somehow use my ability to write to help other people who are also imprisoned. It is all I can do.”

8. Ray loves her work.
Describing her work as an activist, Ray says: “I am absolutely fearless. I like to argue and write and I care about other people. I want to find solutions. I want to have goals.”

9. Ray had DBS surgery.

Diagnosed with PD in 1996, Ray had DBS 7 years later. She describes her path:
“The diagnosis didn’t affect me too much at first, as symptoms were mild —I had survived ovarian cancer 16 years before—but as I have gotten worse my life has changed drastically. When my tremors went bilateral, I opted for DBS and it really worked for that symptom. Advice: find the best surgeon and medical team you can.”

10. Ray is teamed with a canine of remarkable powers.
About her life with him, she says: “I have always loved animals. Had a couple of cute schnauzers; now have Super-Spike, a mixed breed, the best dog of all. He is my caregiver/companion in the last act of my life, but he can’t help me physically. He is getting old and I fell recently helping him up on the bed. He has since learned to use a footstool.”

Wednesday, February 4, 2009

Hello, readers: I am in the process of revamping this blog: posting more often and making posts shorter, more diary-like, and, I hope, more inviting of comments.

I'm also shifting to a new address:

For a while, I will post in both places.

MJF on Frontline: Say What?

I admire, appreciate, and cherish Michael J. Fox, but when he says (on the Frontline program) that he wouldn't go back to where he was before Parkinson's, each and every dopamine-producing cell in my brain, all three of them, scream in protest. If I had that choice, I'd jettison every scrap of silver lining: the wisdom I've accumulated, the courage I've mustered, the empathy I've developed, the knowledge I've acquired, the friends I've made. To get rid of this disease? I'd do it in an instant. I wouldn't think twice.

Reading Matter

  • David Howes, editor. Empire of the Senses: The Sensual Culture Reader. NY: Berg, 2005.