October 21, 2011

Aging Gracefully with a Disability

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.