Until recently, I did not identify as a person with a disability. When I was a child, I knew deep inside that having an obvious birth defect was a source of shame to your family, even if nobody ever said that. Or maybe because nobody said that. In fact, the truth about the cause of my birth defect was deliberately kept from me until I demanded to know just a few years ago.

I was told that “God made me” this way. My Catholic upbringing made me believe it was my cross to bear┬ábravely, and that’s what I’ve tried to do. I was determined to do something positive in response, such as represent other marginalized people through politics.

When I learned that Chemie Gruenenthal could have prevented my burden by pulling their drug from the market long before my mother became pregnant, I was stunned! I suppose we can still say God chose me but greed and power are completely different than an accident of nature. Now, I am even more determined to make something good come of my situation, and that is by sharing my story.

For nearly 45 years I was in deep denial about how much this affected me emotionally. All the fears and suspicions I had squelched my whole life were suddenly impossible to deny. When the suppressed emotions began to bubble up, I suffered anxiety, depression and post-traumatic stress disorder (PTSD). Mental health issues being another source of shame in our society only added to my difficulty.

My husband, daughters, aunt and a close friend have helped me through this difficult shift in my self-identity and processing the grief I never allowed myself to go through. Grief over the many things and possibilities that were stolen from me when my mother took just one or two thalidomide pills at seven weeks pregnant.

When our interim pastor put me on the prayer list at church recently, because of my chronic pain and upcoming appointment at Mayo Clinic, I was finally able to discuss my situation honestly with people who asked. It’s uncomfortable for me to be sharing all of this now but as I do, I’m finally coming to full acceptance.

I appreciate all the love and comfort of my dear friends and family over the past few weeks, most of whom never knew my story.

The day after posting the above on my Facebook page, I awoke feeling as if I had come out of the closet as a thalidomide survivor. I was relieved to share my true feelings but also anxious about how this knowledge might affect others’ perceptions of me.

The response to my post was overwhelming. Tears streamed down my face as I read the many heartfelt messages. I never doubted others’ love and support but very few understood my life experiences. My journey continues…

4 Comments

  1. flidfit
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    Hi Carolyn,

    Just wanted to send a virtual hug…. from one of “the family” ­čÖé

    Here in the UK we are “fortunate” – if that is the right word – as our country is a small one. There was a huge public outpouring of sympathy for the plight of us and our families. The then lady mayoress of London, Lady Hoare, was instrumental in setting up a charity to support our families and one of the wonderful things that evolved from that was our parents gaining support from one another when we were young children.

    That was a long time ago, and the “bond” for many of us is still there. Most of us have very little in common apart from the drug that affected and maimed us.

    Now we are all older and experiencing problems with pain – it’s great to have that support and understanding from others who know exactly what we are going through.

    Simone

    • Carolyn Farmer Sampson
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      Thank you for reaching out Simone! Getting to know some people in our “family” through Facebook has been very healing for me. I’ve been searching for that kind of empathy for many years, without even understanding what I was searching for until I found it. A nurse I know suggested joining a support group for people with chronic pain and I will keep that in mind for the future.

      We Americans have never been acknowledged to the public so there was no opportunity for sympathy or even awareness of our plight.

      Hugs to you and all our peers around the world.

      Carolyn

  2. Katie Pierson
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    You’re awesome, Carolyn. Thanks for sharing this.

  3. Leslie Mink
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    Carolyn thank you for sharing your story. It is so important to talk and learn about each other. It was such a pleasure meeting you and being able to relate to how we both thought and felt and still feel today.