Measure of Delight

Joanna - Walnut Creek, California
Entered on February 16, 2008
Age Group: 65+
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Daffodils decorated the dining tables.

Backstage my hands were damp. My heart was racing. Was I crazy?

Eight of us had volunteered to model as part of a fundraiser for Hospice.

But I’d never done anything like this. Was I tempting fate?

It’s supposed to be fun, I told myself. For a good cause. Breathe. My granddaughter had patiently shown me how to walk and turn, but all I wanted to do was flee from my impulsive folly.

Yet at the curtain call my smile was triumphant.


Because a few years ago I couldn’t have walked that ramp, descended those stairs or made quick costume changes.

A few years ago I was diagnosed with a rare autoimmune neuromuscular disorder. Myasthenia Gravis. Incurable but treatable.

As the disease took hold my world collapsed. Blurred double vision was just the start. In rapid progression I couldn’t drive, comb my hair, write a check or feed myself. One morning I remember being close to tears as I lay on the bed wriggling and struggling for ten minutes trying to put my legs into a pair of elastic waist trousers. My gait was a drunken lurch and climbing the short flight of steps to my home was as daunting as ascending Mt. Everest

By the time the necessary neurological tests were administered. I was terrified. Despite inordinate physical fatigue, my imagination worked overtime. I foresaw my future as a disgruntled invalid.

I began to bargain with the powers that be. “Okay. Forget the legs. Just let me have my hands back.”

Used to being a professional I did not like the idea of something else in charge, something I couldn’t see, something I had trouble saying, let alone spelling!

Losing control of my body was like losing my best friend. But over the course of a year, the daily diet of rest and strong medications gradually began to show results. Small successes became significant.

“Last night I cut my toenails.” I informed the neurologist

“I’ll put that in your file,” he grinned.

Slowly, I began to focus on what I could do, instead of what I couldn’t. If I was no longer able to walk three miles, I’d manage a five-minute walk with a cane.

Ruthlessly, I edited activities, eliminating sources of stress when possible and learned that some distinguished VIPs took afternoon naps.

Now, if I have a project due I allow extra time. I don’t try to accomplish five events a day. Not even three. And sometimes I plug in rest days.

Although I used to rush from one task to the next, these days I take time to savor a cup of tea and watch the sunlight on the leaves

Learning to live with a chronic illness is humbling..

I believe you have to accept what you can’t change, but you can’t let it defeat you.

And I’ve learned that every day has its own measure of delight.