All I’ve ever wanted was to be ordinary. Ordinary people do things that for me would be extraordinary. Learn to play the piano, participate in team sports, plant a garden, practice the full range of yoga poses, join hands with others at church without feeling anxious. Ordinary people are recognized for their strengths and accomplishments without mention of having overcome their weaknesses to do it.

As a child, I believed I could do anything I wanted until adults started suggesting otherwise. First, the fifth-grade band teacher said my choice was limited to the drums or the trombone. I hadn’t heard of Karen Carpenter and I wasn’t interested in instruments played mostly by boys. I probably couldn’t play those instruments anyway without developing wrist or elbow injuries, though I didn’t know it yet. In short, the band teacher’s assessment was correct but other adults tried to exclude me based purely on their own discomfort.

When Dad took me to the bowling alley to sign up for a team, the coach was skeptical.

“I can’t coach her,” he said upon meeting me. “I don’t know how she’d hold the ball.”

“You don’t have to teach her,” Dad said. “She’ll find her own way.”

The coach grudgingly agreed and after a bit of experimenting, I learned that with careful aim, a bowling ball thrown awkwardly with both hands could hit a fair number of pins.

Catechism classes were held in church members’ homes that year and my teacher’s daughter, a few years older than I, had one deformed hand. She was adept at hiding the hand and no one mentioned the unpleasant thing we had in common.

One day I was getting ready for class when I realized my workbook was missing. I was embarrassed to tell the teacher, but she wasn’t surprised.

“Oh, you left it here last week.” She handed me the book with my name on it and I sat down at the kitchen table with the other kids.

“Open your workbooks to the inside cover,” she said. “We’re going to trace our hand and write all the sacraments on it.” When I opened my book, there was a five-fingered hand already traced in it. Surprised and confused I looked up to see her watching me. Her wink was all I needed to know that this was a secret. She had somehow kept my book last week, knowing the coming lesson. Quietly I wrote the Seven Sacraments, one on each of the fingers, one on the palm and one on the wrist. My missing fingers were apparently something to be embarrassed about.

The following summer I joined the city’s athletic association softball league. I don’t remember whose idea this was since I was anything but athletic. I was placed on a team and awarded an outfield position, but the softball coach took a refreshing approach to my perceived limitations.

“I bought her an aluminum bat,” she said in the gravelly voice of an older woman who’s smoked for a lifetime. “It’s lighter than the wooden bats and will be easier for her to swing.”

“Oh, we can’t accept that,” Dad said. Buying an expensive piece of equipment for just one child was an embarrassing extravagance and certainly not in team spirit.

“Of course you can. I’m sure there will be other children who can use it in the future.”

I never hit a ball out of the park with that bat; in fact, I was probably the lowest scoring kid on the team, but I tried.

In seventh grade I joined the gymnastics team, not realizing that every event required normal arm function and strength. I enjoyed warming up and practicing with the other girls but soon realized I couldn’t compete in floor exercise, vaulting or parallel bars. I was proud to choreograph a balance beam routine with little arm strength needed. But after a few competitions, I noticed that cartwheels and handsprings earned the most points and my low scores were dragging the team down. Looking back, I wonder if the other girls talked about me.

Mom sewed me a beautiful outfit to wear to the end-of-season awards ceremony and when the coach announced a special “courage award” I heard my name called. While the other girls were awarded medals, I received a green-tipped white carnation, our school colors. I later learned that Mom knew about the award, an idea conceived by the coach after overhearing girls from another team making fun of me.

Ironically, I hadn’t heard the taunting myself, so the award only called my attention to something I was unaware of. While I knew she had good intentions, for me the award symbolized sympathy rather than accomplishment. Embarrassed, I didn’t return to the team the following year and that was the end of gymnastics.

Without sports or band, reading filled most of my time. I spent a lot of time riding my three-speed bike to the public library. With my short left arm, it was difficult to reach the handlebars so I mostly rode in one gear without hands except for struggling with the hand brakes. It’s a wonder I never crashed.

While many of our conversations with other adults focused on my limitations my fifth-grade teacher recognized my biggest strength.

“Carolyn is reading at a college level,” he said at the parent-teacher-student conference. The daily newspaper was part of my advanced reading class, fostering a lifelong passion for journalism.

When I joined the junior high newspaper a couple of years later, I learned that reporters have access to very important people like the ninth-grade football quarterback. He might not speak to me in the hallways or invite me to a dance but being interviewed by the press gets attention from VIPs.

Eventually, I became a feature writer and reporter for the weekly newspaper, followed by many years in corporate communications positions: writing and editing newsletters, trade magazines and websites. Of course, I couldn’t have done that either if Dad hadn’t insisted the high school typing teacher allow me in the class. While he didn’t believe I would get anything out of the touch-typing class, I type 45 words per minute with two fingers on my right hand.

Ordinary people work until they reach retirement age to qualify for the maximum social security. But two years ago, plagued with pain and other health issues caused by complications from my thalidomide injuries, I was forced to retire at age 54. My hard work to obtain an advanced degree didn’t allow me to work to age 67 but it did afford me a good salary which in turn led to a higher than average social security check. Or at least higher than average for a woman who retires early; it’s still twenty percent less than a man with no degree might receive. But that’s another story.

I’m also fortunate to have a husband who’s still working. Life for some other U.S. thalidomide survivors is far less comfortable. Those who retired after a shorter or less lucrative career, with no one to share household expenses, can’t pay for a wheelchair lift for their van or healthcare deductibles like a new prosthetic leg. Travel and leisure activities are not only outside their budget but also quite challenging.

Although millions of Americans find themselves in a similar position due to other health conditions, thalidomide survivors should have been compensated for their injuries by the companies that caused them. The German manufacturer, Chemie Gruenenthal, was granted immunity by their government soon after the thalidomide tragedy was discovered. Ironically, the company now boasts about its foundation’s efforts to help thalidomide survivors obtain adapted vehicles, citing inaccessibility of the public transit system. While public transit certainly should accommodate all people with disabilities, Gruenenthal is responsible for those maimed by thalidomide long after executives knew about its devastating effects on unborn children.

The American distributor of the thalidomide samples our mothers took during pregnancy, now known as GlaxoSmithKline (GSK), is still actively fighting a lawsuit filed in 2011 on behalf of more than 50 Americans. Dozens more didn’t know about the suit in time to be included. And then there are the unknown numbers who still haven’t found our group.

GSK is worth $107 billion. Their mission, according to their website, is “to improve the quality of human life by enabling people to do more, feel better, live longer.” A tiny fraction of their immense wealth would do just that for thousands of people maimed by thalidomide more than 56 years ago. Unfortunately, the justice system that is supposed to protect U.S. consumers does far more to protect corporations, executives and investors. Our battle to be properly recognized and compensated continues.

Please comment and share this article to help raise awareness of our story. 



11 Comments

  1. Liri

    Carolyn this is really good . Has everything, personal experiences, knowledge and very informative thank you

    Reply
  2. Leslie

    Carolyn – This is excellent and as you know I can relate to many school examples you mentioned. My parents always encouraged me to “try” to do whatever it is I wanted to do like the “normal” kids. Life hasn’t been an easy rode, and it is a shame the drug company doesn’t do right by us, we still continue to do the very best we can. You are an inspiration to me and I am so happy to have you as a friend.

    Reply
    • Carolyn Farmer Sampson

      Thank you, Leslie. It’s crazy how many common experiences and feelings our group shares.

  3. Marlys Rose

    Very well written. You should write a book.

    Reply
  4. Angie

    I believe you would be a huge asset to current public school systems on inclusion topics and adaptations that help us not cause embarrassment. Also, how much to talk about a disability vs ignore it. Did you feel that your disability was the elephant in the room? Would it have helped if more adults gently talked to you about it (like the hand tracing)? Can’t wait to talk in person about this.

    Reply
    • Carolyn Farmer Sampson

      Yes, Angie, I think the best thing for a teacher to do is speak with the parent and/or child, depending on the child’s age and maturity, about whether they would like to speak to the class about their disability. Perhaps the child and/or parent could write a letter to the other parents explaining their condition and challenges. I don’t blame my religion teacher for her actions in that day and age. But today, I believe we are more open about these things. Many people I know consider the stigma and ignorance of others almost worse than the condition itself.

  5. Jennifer Maroney

    Wonderful and informative post Carolyn – I am so glad I found your blog. You are a wonderful writer!

    Reply
  6. I am Th MS

    IamThMS – I am Thalidomide Multiple Sclerosis. The only 1 of the 50 who never met the others because I can’t get in warm air or humid air. There are only a few, some 3 to 6, remaining still after (GSK). This mid August it will already be 8 years since I made contact in the case. I hold the same opinion as I have since at least the early 1990’s. It will take political involvement to breach “The Statute of limitations”. Someone outside the lawyers must lead the way. Please consider doing such!

    Reply

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