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 a fetus, 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.

15 Comments

  1. Dawn

    What an inspirational read Carolyn. As a British Thalidomider I probably take for granted the peer support network we have here as it has been there since we were small children. In some cases, we know too much about each other..lol. However, I can identify totally with the feeling of “belonging” and feeling comfortable with people. Here in the North of England a group of us girls meet regularly for lunch, chat and prosseco..lol, and it’s such a relaxing, supportive thing to do. I know we are lucky here in the UK, with a degree of financial stability that many of our fellow Thalidomiders worldwide don’t have, so if we can share information, support and friendship, it’s the least we can do. Xxx

    Reply
    • Carolyn Farmer Sampson

      Thank you, Dawn. We appreciate all the love and support from our sisters and brothers around the world.

  2. Kimberly Firestone Arndt

    Well done Carolyn! You excell at writing and putting words to emotions. Your words took me straight back to Atlanta and I see the faces of our new family. Whatever awareness we can bring to our plight, we have already gained so much having met each other. Thank you!

    Reply
  3. Lois

    I had no idea there was a US Thalidomide group. I was born in 1959 in Rhodesia to US missionary parents. We came back to the US when I was 3ish. I didn’t know until a few years ago that my mom took Thalidomide. My mom told me she didn’t, but my dad told my older sister that she did.
    My birth defects are not the ones you commonly see: arm deformities. I was born with Fibular Hemimelia + Congenital Femoral Deficiency. I believe it was from Thalidomide, but I can’t prove it. I wasn’t correctly diagnosed until 4 years ago— as a mature adult.
    I find this group interesting, but I’m not sure if I would fit in.
    Comments?

    Reply
  4. nika

    I would have read this earlier, but my internet connection at the hotel we were staying at in the UK was spotty. I’m so glad you found your tribe!

    Reply
  5. Hazel Simmons

    Well done Carolyn, when you finally get to meet other Thalidomiders from from across the globe (I say, hoping you won’t be too scared to take that step!) that you have a instant family right across the world, we share so much, we are extremely lucky in the UK not just from the financial aspect, but because most of us have know each other since we were in our teens and some we have known all our lives. You even managed to get an Aussie there (Jeff). Lois, if you are a Thalidomider I would be extremely shocked if you didn’t fit in straight away with your fellow American Thalidomiders, I was apprehensive about meeting Thalidomiders from across the globe at the first United International Thalidomide (UNITH)conference held in Holland in 1992(sadly UNITH no longer exists, but we do still try and get together at least once every two years internationally I mean), but as soon as I got there, there was an instant connection, so please join Carolyn for the next one! xx

    Reply
    • Carolyn Farmer Sampson

      Thank you, Hazel. We appreciate all the love and support from our sisters and brothers around the world.

  6. Leslie Mink

    Our gathering, thanks to you, was wonderful. I never thought, I would ever meet someone else who dealt with the same feelings as myself. We have to learn to do things our way, there is no one to teach us. Thank you!

    Reply
  7. Berrisford boothe

    Carolyn,
    I drafted a lovely reply. to your blog and feed. Unfortunately I hit submit before I entered the information fields and it was lost! Pity. Let me just say quickly that I think what you’ve done is wonderful and that I’d like to be included the next time you have the desire to gather the American thalidomiders.

    I never forget my first experience with other “cats on a dog planet.” That was back in the UK quite a few years ago. As with most in your group, my years in America are about a singular self-reflective life. Reading your summary of the meeting, brought back specific empathy.

    I have no one to blame but myself for being outside of the loop on this and missing the meeting you curated. I’ve been otherwise engaged in the sober realization that I have to go on long term disability to protect whatever ability and mobility remains in my primary use arm.

    More then social healing, group meetings by the American thalidomiders, will put us in the space of support through health advocacy. Real suffering from deterioration is happening and it’s an uphill climb to convince others in our personal and professional life, that we’ve weened not to think of us as “special” that we have indeed arrived at a place where we need to be considered special. A place where policy and practices need to be changed to accommodate every one of us for years of dedicated work and overuse.

    Please reach out to me directly here on Facebook. It’s not going to be hard to find an African-American name Berrisford with thalidomide deformities. Big ‘flidder’ hugs. -Berrisford Boothe

    Reply
  8. Deb Decaire Conway

    CAROLYN, I am a Canadian Thalidomider. I can certainly remember the first time I met other Thalidomiders, about 30 years ago-my how time flies!! (I luckily had a twin brother so I wasn’t totally alone in the world). I remember thinking that at first, I was nothing like ‘them’ because I was so used to being around only ‘able bodied’ people. After the first hour of being together I soon realized that I had finally met ‘my people’. We are all the same, even though our deformities are somewhat different. For the longest time all I wanted to do was fit in some where…and it was in finally becoming a part of the group that I did. I am so excited for all of you to find a way to be a cohesive group. (I suspect that you already are!)
    I wish that the gathering were closer to me-as I would have LOVED to participate in it. I am sure that you all will have future reunions and if they are close, I would love to travel to meet all of you. Know that if there is anything I can do to help, I’d love to. I live in southwestern Ontario-right across the border from Detroit.
    In closing, I wish all of you the best,
    Sincerely,
    Deb Conway

    Reply
    • Carolyn Farmer Sampson

      Thank you for your kind words, Deb. We will let everyone know next time. We should be deciding on a date and place soon for next year.

Submit a Comment

Your email address will not be published. Required fields are marked *