THE WRONG SIDE

“What do you need me to do today, Ms. Debbie?” asked Sandy, as she walked into my office.

Sandy was the student assigned to be my “work-study” for the 2003 academic year to help with tasks such as running errands, checking mail and stuffing envelopes. Since I have spinal muscular atrophy, I found Sandy’s help to be a godsend in my job as an instructor of accounting at Judson College.

We had known each other for three years and worked together for two. During those years, we had come to know each other pretty well. I knew she loved the Cathedrals

(a Southern gospel vocal quartet). She knew I loved Coke, but hated Pepsi.

During those years, Sandy also came to know my disability well. She knew to set things on the edge of my desk, within my reach. She knew to put a straw in my Coke to avoid mopping later. She knew I reached for things with my right arm because it was stronger than my left. She also knew, because of that, I stapled papers oppositely from most people — in the upper right hand corner, making them easier to flip with my right hand.

ANTISENSE IS PROMISING

Thank you for your article “Defensive Action: Can Toxic Genes Be Blocked to Treat Disease?” (January-February). My husband and I were excited to read about the development and potential use of an RNA antisense drug to treat myasthenias, as our daughter has a congenital myasthenic syndrome.

Kelley Harris
Bristol, Tenn.

GOING PLACES

I would like to comment on the wonderful article “From Sea to Shining Sea” (January-February) on travel agencies specializing in travelers with disabilities.

We have always loved to travel. Since being diagnosed with a neuromuscular disease in 2001, I now use a wheelchair to get around, and traveling has become more difficult. Never one to give up on something that I love, I continue to seek out exotic travel opportunities.

I have found that, as the article points out, there are still ways to make it happen; one just has to do a little more homework and planning. I can still travel to exciting and exotic destinations.

While surfing the net, I recently came across a wonderful tour company — Adventure Holidays Thailand ( www.adventure-holidays-Thailand.com) — who design tours of Thailand for people of all ages and all disabilities. We are planning a trip to Thailand that will include, among other things, a 3-hour elephant trek, a river raft trip, even parasailing, as well as the usual temples, palaces, beaches, shopping and sightseeing.

I asked Sandy to staple the pages of a test paper for the next day — 14 copies for students and one for me to use as the key.

“So, I need to staple one on the wrong side?” she asked innocently. I smiled.

“Now, why do you refer to my side as the wrong side?” I asked. “Why are the other 14 not wrong?”

“I’m sorry. I meant…” she began to explain.

“I know what you meant. I’m just picking at you,” I said.

From then on, instead of referring to the “right side” and the “wrong side” of the paper, we called them “my side” and “your side” — acknowledging the fact that just because something is different, it is not necessarily wrong.

Debbie Kornegay
Centreville, Ala.

LOOKING AHEAD IN QUEST . . .

Bonnie Guzelf Phoenix

Watch upcoming issues of Quest for stories on:

• Exercising with a disability

• Coping with prednisone

• Service dogs

• Myotubular/centronuclear myopathies

• Planning for natural disasters

• and more on technology, travel, accessibility issues and medical care

Check www.mda.org/publications/Quest/q-helpquest.html to find out which stories we need to interview people for.

Share your story, and help others with neuromuscular diseases.