Magazine article The Exceptional Parent

On Simply Being Someone's Friend. (Editor's Desk)

Magazine article The Exceptional Parent

On Simply Being Someone's Friend. (Editor's Desk)

Article excerpt

There's a lesser ancient myth about two friends, Damon and Pythias. I forgot which one of them (that's the beauty of referring to a "lesser" myth, you don't have to recall the details) but one was held captive by a ruler (obviously a lesser ruler in fact) and condemned to death. The other negotiated to be held in his friend's place while the friend was released to finalize his affairs and say his good-byes. At the eleventh hour the friend returns and presents himself to be executed thereby releasing his stand-in friend. The ruler was so impressed with the commitment and depth of these two friends that he released them both as a testimony of their friendship (with the proviso that the ruler be admitted to their friendship). We're talking high stakes friendship here.

I recently conducted a workshop at the Mucopolysaccharidosis Society at UCLA and as usual I came away with more pearls than I delivered. Probably the brightest pearl was an encounter (aren't they always). Epiphanies and eurekas are typically hand delivered.

At the conclusion of one of the seminars I started chatting with one of the attendees, an attractive women from Atlanta named Alice Horne. When I was in college the routine meeting line was always "So what's your major?" At disease conferences it's evolved to "So why are you here?" It's a question that's geared to get an instant handle on the other person.

Alice smiled and didn't offer me a response so I stepped up to the plate and went through the list of the Top Ten Reasons Why Someone Would Attend a Weekend Rare Disease Conference.

"You must be a parent," I offered. Her head went from left to right several times.

I came back "A genetic counselor?"

"Wrong again" she said.

"Special Ed Teacher?" I surmised.

"Afraid not" she countered.

From there I hit her with a fusillade of both barrels, "a physician, nurse, PT, OT, RT, SLP, DSP, behaviorist, counselor, medical researcher" naming the professions of the majority of attendees.

Leaving the shores of my short list I went to the far-reaching margins of last contenders stretching my interdisciplinary IQ.

"Clergy, lawyer, nutritionist, pharmaceutical sales, durable medical equipment, home health, insurance, benefits and finally with some reasonable assurance that I got it, I ended with a medical journalist. "So you're a reporter?" She denied them all.

"I got it!" I fired back.

Finally after years of attending rare disease conferences hoping that one day I would finally meet perhaps the one person that needs to be at every one of these meetings, I was confident I had guessed it.

"So which senator do you work for?" I was confident that Alice was there to represent some astute, competent and caring elected official who could impact on research funding, special care provisions and support services."

Alice said "Wish the room was filled with them" but I'm afraid you're not even close."

My white flag went up in the form of raising and lowering my shoulders in obvious mental resignation

She smiled and said, "I'm simply someone's friend"

I thought to myself, "I'm simply someone's friend?" I didn't get it, it didn't compute, I didn't remember seeing that next to a small box on the conference registration form--or on any form ever. …

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