I had another post planned for today, but I decided to put it off when I visited the Living Chronically blog and watched two amazing videos posted there. Since I don't know how to upload video to my blog (I could probably just click on that video button and figure it out, but I'm not well enough to learn something new today), I thought I'd post a couple of links to the Living Chronically posts.
The first is a powerful video story created by Laurel, a woman with CFS who is bed-ridden, to show at the recent CFSAC meeting. I hope the committee members were as moved as I was by her story; I was in tears. Laurel's story reminds me of a wonderful book, Encounters with the Invisible, by Dorothy Wall, a writer who was also bed-ridden with CFS (see book link below).
The second video is from a segment on CFS on Good Morning, America last week. It's a very good summary of CFS for the general public. Interestingly, though she doesn't mention this at all during her interview, Dr. Donnica Moore has a son with CFS. I corresponded with her a few years ago, and we traded stories. Her son and Jamie are the same age, both soccer players, and both hit with CFS at about the same time (I think Jamie's started a little earlier). Since then, she's become heavily involved with the CFIDS Association of America, and her son, Brian Bernard, is one of the people featured in The Faces of CFS photo exhibit that's touring the U.S. I've heard that he's doing a bit better these days, after an underlying Lyme infection was diagnosed and treated, though I haven't spoken to Donnica personally in awhile. She did a great job in the Good Morning, America segment.
Maybe we're finally making some progress in getting the word out about CFS - thank you to both Laurel and Dr. Moore for their excellent contributions.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
3 comments:
I found Laurel's story deeply moving too, Sue. I would also recommend D. Wall's book, Encounter's With The Invisible...
Hope you feel better soon!
Thanks for posting Laurel's video, Sue. I rarely find someone less functional than I am, but she is. It made me cry. It's so courageous of her to have made that video. Courageous and very difficult, no doubt.
I thought Laurel's video was powerful stuff.
Progress seems to be happening.
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