This week's beauty is Marion Leeds Carroll who is sixty-years old. Marion has quite a story to share about living with Multiple Sclerosis.
I bring you Marion:
One day a friend with
colitis and I were comparing our differing challenges. She pointed out:
We have it all over our Temporarily-Non-Disabled neighbors. *They*
find the limitations of age a frightening, depressing shock. *We've* been
finding ways past our limitations all our lives!
So... when MS fatigue
hits hard but I must eat *something*, I can find the pantry with my eyes shut,
grab a can of soup, slide along the kitchen counter, and plop onto the stool
I've set where I can reach the bowl, the spoon, the microwave- all without standing.
I can even sit there and eat my warmed soup without getting up. Is this
disability? No, it's finding solutions.
Disabling fatigue is a
hallmark of MS, so any career I might have pursued was impossible. The
last time I tried to work a simple 40-hr week, I was hit with an MS relapse and
had to quit. But I can't spend my life lying in bed, doing nothing! My
solution: lots of little careers, working mainly from home.
- I joined a club, asked
what I could do to help out, and spent ten years editing their newsletter (I
still maintain their web site), making e-friends around the world in the
process.
- Afraid of leg
problems, I offered to direct rather than perform in a show- and fell into a
long career of directing the shows I love.
- I went to services,
sang along with prayers- and found myself leading the music for key holiday
services.
- I accepted a role in
an opera, moving carefully to avoid making it obvious that standing was
becoming a problem. When the director saw me later, after I'd started
using a cane, he asked me to join the chorus of another production... and when
I said, "Only if I can come on as a little old lady who shakes her cane
threateningly!", he replied, "That's just what I wanted you to
do!"
- Hooray for the Web!
Not just for shopping or researching on-line to save energy: A bit of
training led me to a part-time, flex-time, telecommuting web-design job. I work
enough hours to receive full benefits, but I can rest whenever I need to.
I've always been the one
to hold a door, to move chairs, to help... but when my legs gave out, I had to
let others help me. It finally dawned on me: If it gives me
pleasure to help others, it probably gives others pleasure to help me! So
I can give pleasure by accepting help.
I can't sing for hours
as I once did- but I can organize concerts and let others do most of the
singing.When I heard about the Accelerated Cure Project for Multiple
Sclerosis, I was so impressed by their work that I wanted to support them with
a benefit concert. So I invited talented friends and started my annual Music to Cure MS concert. If you are in the Boston area catch our 9th concert on October 30 in Arlington, MA.
When I turned 60 last
month, I really wanted to sing an entire concert all by myself... but I got
real: I called it a party instead of a concert, invited friends, warned
them I hadn't rehearsed- and everyone had fun.
...and- what's next?
If a door closes, there's still a window open.There's always something I
can do, and if I can't do it the way I used to, I'll find another way!
Thank you Marion for sharing your inspirational story.
Louise
Thank you Marion for sharing your inspirational story.
Louise
