GROWING UP IN PUBLIC -- part 6

Once I went to law school and got married, my time became very precious. Working as a staff attorney for a state agency, taking care of a house and finding time for writing is often all I can manage.

Consequently, volunteering with the Arthritis Foundation has taken a back seat to drafting contracts, helping to make our house more accessible and, in team with my husband, writing free-lance articles about people with disabilities and travel.

I don't really miss the fund-raising dinners or the staged photos with celebrities very much.

I had my time in the spotlight and I have my memories of television interviews, speeches before congressmen, and, of course, the Moose.

While I still have my qualms about using kids to raise money for charities, all in all, my experiences were positive ones. I gained poise, grace and public speaking skills that have helped me in my legal career.

And maybe along the way I touched the lives of a few kids with arthritis and their families who were as scared and confused as I was more than a quarter century ago when all I wanted was to do handstands in my back yard again.

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.

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.

GROWING UP IN PUBLIC -- part 4

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

Soon my volunteer work became a regular part of my life. The Foundation asked me to be featured in a slide show titled -- what else? -- "Heidi." A photographer followed me around school taking pictures of my efforts to deal with the roadblocks of a typical day.

He also snapped a few shots of my parents and my miniature schnauzer.
When the slide show was being assembled, it was more convenient to hire actors to dub in the voices of my parents and me.

The actor hired to read my dad's part had a voice several octaves lower than my dad's and my mom and I laughed ourselves sick the first time we heard that deep voice paired with my dad's face.

No one else was aware of the dubbing and the otherwise excellent slide show has been used as a public education tool by virtually every chapter across the country. Even today I occasionally meet people at Foundation functions who are amazed that I'm "the Heidi."

My smiling face continued to appear on publicity material when I became the poster child promoting an alliance between the Arthritis Foundation and the Loyal Order of the Moose. For a while, the Ohio Moose adopted the Foundation as their official charity, later to be followed by the Moose nationwide.

I spoke at innumerable lodge dances and awards banquets and while I endured horrendously bad moose puns and sometimes inedible rubber chicken dinners, I made some wonderful, life-long friends -- of the artificially antlered variety, of course.
My publicity and public education work also included a trip to New York City for interviews by columnists from two newspaper syndicates and an appearance on a radio talk show.

I was enjoying the opportunity to travel and be in the spotlight and it felt good to find something that I knew I could do well.

One of my fondest memories is my appearance on the Arthritis Foundation telethon when it originated from Atlantic City, N.J. While it was fun being interviewed on national television and checking out the noisy, neon-lighted casinos, my favorite part was sitting next to falsetto-voiced crooner Tiny Tim in the hotel restaurant.

If only I'd had a camera.

TOMORROW: Child Celebrity

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.

GROWING UP IN PUBLIC -- part 3

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

Soon my folks were volunteering extensively with the local chapter and my mom was appointed to several committees on a national level for the Foundation. Years later, she co-founded the American Juvenile Arthritis Organization, a group comprised of health care professionals and lay people whose sole focus is the forms of arthritis that affect children.

Where was I in all of this? Like any young teenage girl, with or without a chronic health problem, I was obsessed with clothes, rock 'n' roll bands and, of course, boys.

But I was also in search of my own answers about my arthritis and what I could expect from the future. I sometimes thought about the thousands of other kids with arthritis facing the same problems. The next natural step for me was to begin volunteering my time and talents with the Arthritis Foundation.

It started out in small ways. I was interviewed by several local newspapers about what it was like to grow up with arthritis.

I'd tell them about my personal challenges and give them information and statistics about arthritis.

I was soon proficient at rattling off the numbers -- "a new diagnosis every 30 seconds, one out of every seven people, no known cause or cure." I always hated that last one.


TOMORROW: The Heidi Show

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.

GROWING UP IN PUBLIC -- part 2

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

By my mid-teens, I would get to travel to several major cities, be interviewed by top rate print and broadcast journalists in New York City and shake hands with famous politicians, such as veteran U.S. Senator Alan Cranston.

Not long after I began working to increase awareness of juvenile arthritis, I was delivering speeches before thousands of people and I even had my own column in a national publication.

Closer to home, my disease process was totally out of control, mostly because it was so tough to find a competent specialist in juvenile arthritis more than two decades ago. Finally, my parents found a good pediatric rheumatologist, he found the right balance of medication, and I found some stability and normalcy.

Once we could exhale for a while, we began to look around for some answers and ideas for coping. Soon my folks were volunteering extensively with the local chapter and my mom was appointed to several committees on a national level for the Foundation. Years later, she co-founded the American Juvenile Arthritis Organization, a group comprised of health care professionals and lay people whose sole focus is the forms of arthritis that affect children.

Where was I in all of this? Like any young teenage girl, with or without a chronic health problem, I was obsessed with clothes, rock 'n' roll bands and, of course, boys.

But I was also in search of my own answers about my arthritis and what I could expect from the future. I sometimes thought about the thousands of other kids with arthritis facing the same problems.

TOMORROW: Juvenile Arthritis

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.

GROWING UP IN PUBLIC

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

In 1973, shortly after my ninth birthday, I was told by my pediatrician that the pain I'd had for several months in my shoulder and feet was caused by juvenile rheumatoid arthritis.

The week I'd spent in the hospital undergoing tests had yielded a diagnosis. My parents were confused, scared and disbelieving that their little girl had "an old people's disease."

I was anxious to take a pill and return to practicing handstands in the back yard.
Within a month the pain had found its way to nearly every joint in my body. It hurt my jaw to chew.

It hurt my shoulders and elbows to pull on a shirt. It hurt my wrists to carry my
schoolbooks. It hurt my fingers to write.

It hurt my hips and knees to climb stairs. It hurt my feet to walk from my bedroom to the bathroom when I got up in the morning.

It hurt.

No matter how much I tried to deny it, no matter how many reassurances from my parents and doctors that a remission was possible, I knew inside that my life would never be the same again. And, it seemed to me at the time, the change was not for the better.

My friends and classmates treated me funny -- acting either overly attentive or strangely aloof. Old ladies at church wanted to swap war stories about heating pads and Ben-Gay.

Strangers in shopping malls stared when I limped or struggled with doors. And, of course, the pain -- there was always the pain.

Ironically, the illness I was fighting so desperately would eventually send outstanding opportunities my way.

TOMORROW: Poster Child

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.