GROWING UP IN PUBLIC -- part 5

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

The Atlantic City trip was an awakening of sorts. A pair of young, adorable blond-haired twin girls had also made an appearance on the telethon. They were loved by the audience and I noted that although they had arthritis, they exhibited little, if any, physical limitations, unlike myself.

I was beginning to feel like an aging movie queen who had her close-up shot stolen by the pretty, young starlet. For the first time I began to have second thoughts about how children were used to raise money for charities.

My focus turned more toward public speaking and I traveled to such cities as Washington, D.C. and New Orleans for fund-raising events. I met senators and congressmen and made friends with people from other chapters across the country.

In the meantime, I was asked to write a column directed at kids with arthritis for the National Arthritis News.

The column addressed issues about coping. It featured a pen pal list so that kids could write each other and not feel so alone. Even after accepting my arthritis and meeting many others in the same boat, I could still remember how alone I'd felt when
I was newly diagnosed.

Throughout my teens, I never really had a remission from my arthritis. The disease continued to progress, forcing me to become the proud owner of bilateral shoulder, hip and knee replacements and also to have my ankles fused.

When college came along, my arthritis stabilized.
The damage resulting from the disease's previous fierceness, however, will always limit me physically.

I plan on a steady diet of anti-inflammatory medication the rest of my life.

I can walk only short distances and it must be with the aid of platform crutches. Longer distances require a motorized wheelchair if I'm alone or a manual chair if someone's around to push me.

Stairs are impossible without assistance, and then, only a couple at a time. I am able to drive a wheelchair ramp-equipped van with a seat that turns around so I can move from wheelchair to driver's seat.

I can do most of the things I like to do, as long as I pace myself and rest when I start to drag down.

TOMORROW: Poster Child Grown Up

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.