Finding Our Tribe: Thalidomide Survivors

by | Mar 28, 2018

In spite of the many blessings in my life, I’ve always felt something was missing. I didn’t even know what it was until I found it. Three weeks ago, I had the surreal experience of meeting fourteen other people who share my rare birth defect: phocomelia (deformities of the arms and/or legs) caused by our mothers taking thalidomide, a powerful sedative, in early pregnancy.

For months we planned to meet for a long weekend at a hotel where we would eat together, learn together and, for the first time in our life, speak frankly about our experiences to people who understand. The possibility was both exciting and terrifying.

How would we feel about ourselves after observing others with similar deformities? How would the hotel staff and other guests react to seeing a group of people with shocking deformities? Would we be comfortable with each other in such a brief time? There’s a wide range of conditions among us, would there be someone with injuries similar to mine?

At first, I planned to fly to the event alone but my husband suggested we take a two-week road trip. When the first day of our event finally arrived, I jumped out of the car and strode toward the hotel doors when I suddenly realized I was wearing only a tank top. I rarely leave my house without long sleeves, especially in a professional setting. As the leader of the event, I wanted to avoid stares and be taken seriously by the hotel staff so I turned back to get my sweater from the car.

“Hey, Carolyn!” Leslie, the one person I had met before, had already arrived.

‘Wait,’ I said to myself. ‘I don’t need my sweater here. I won’t be alone in my appearance.’

It’s impossible to put into words exactly what this event meant to us; it has taken me three weeks just to process it. The weekend was a whirlwind of activity. We gathered at a long table in the hotel restaurant and staked our claim to it for the next four days. Sometimes it was hard to concentrate on one conversation while picking up bits and pieces of the others. I didn’t want to miss a single word.

One man, whose arms and hands were most like mine, described his “out of body experience” of seeing others with similar defects. Like me, he has functioned as an able-bodied person all his life, graduating from college, pursuing a career, marrying and raising children. We don’t see how we look to others. In my case, I try not to think about it. I had the same out of body experience the first time I saw videos of thalidomide survivors from other countries online in 2011. It took months to get used to the idea that this is how I look. But that powerful experience was just a fraction of actually meeting.

The second night, we gathered in a conference room to learn more from Dr. Trent Stephens about thalidomide’s many possible effects on an embryo, some of which we did not discover until recently. Ears, eyes, jaws, spine and internal organs can all be affected, depending on how many pills our mother took and on what days of pregnancy. We also learned about advocating for ourselves as individuals and a group. Despite the Americans With Disabilities Act of 1990, we still endure much ignorance and discrimination.

Before the gathering, I expected there would be many tears as we told our stories, an overall heart-wrenching experience. In the end, there was far more laughter than tears. An amazing, healing, empowering experience.

I was surprised by our many common experiences; leaving abusive marriages in our youth; parents or siblings who never really accepted us; doctors who refused to treat us, and the list goes on. Our mothers carried guilt and shame for having taken the medication, even if no one blames them for not knowing its consequences.

One woman had a scar almost identical to mine down the back of one arm. We discovered we both have a fused elbow joint and the same reconstructive surgery to allow better function. Another woman had many corrective surgeries in her first four years, some of which did little good, and suspects she was a medical experiment for the hospital.

I spoke about how I’ve always been uncomfortable with people praising me for overcoming my challenges. I don’t consider my efforts out of the ordinary; what else could I do? All of us persisted in spite of being denied jobs and other rights. The others shared my outlook on this and many things.

Two of the people in our group were born in other countries where such gatherings have been held for years. Their experience was invaluable in helping us navigate the hotel where, after noticing our short arms and missing fingers, other guests asked questions about our condition. Several in our group mentioned that the hotel staff appeared unfazed by us and how comfortable they felt. I later learned from our event planner that the staff had been briefed in advance. At the bottom of our event sheet was a note: these guests have serious disfiguring birth defects; some will need their food discreetly cut up in the kitchen.

One man in our group likened us to long lost brothers and sisters and we certainly feel like family now. We seem like an especially compassionate group, including the spouses, partners and friends who attended.

We are committed to supporting each other and also telling our story. The U.S. Government still lists the number of U.S. Thalidomide survivors as 17. This incorrect number has been repeated in countless documents and news articles for decades. We don’t know the actual number but we likely number in the hundreds.

The little-known story of the thalidomide tragedy in the U.S. is too complicated to cover in one post. But stay tuned for more details in the coming weeks. Until then, please share our story with as many people as you can. It’s one that every American should know.

(This essay was first published on a former blog “View From the Hill, Reflections on Life” by Carolyn Farmer Sampson.)

Written by US Thalidomide Survivors