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…

7 Comments

  1. flidfit

    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

    Reply
    • Carolyn Farmer Sampson

      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

    You’re awesome, Carolyn. Thanks for sharing this.

    Reply
  3. Leslie Mink

    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.

    Reply
  4. I am Th MS

    Proverbs 3 vs. 5, 6
    A passage given to me by a retired school teacher who lead me to salvation at age seven. But it started around age 2/3 years old. As I lay on the floor very sick with chicken pox with a high fever waiting by the screen door waiting for the sun to go down when cool air would flow over me. A toddler reflecting on the birth defects, discomfort and pains trying to play on the floor with older siblings. Unable to use the swing set knowing the joy they get from it. Parents that bought another set with the two person chair so I could ride. All the broken glasses I dropped trying to drink at meal times. Thinking this isn’t fair! Why am I so different? Why am I the only one?
    Now our family had nothing to do with religion at the time. I knew nothing about any religion or a God. But something entered my thoughts. There must be a God. A God that created us and life. I don’t understand it but there must be. Then entered my mind; I don’t know how a God cold allow a little child like me with these defects to be and how He could allow me and other little children to suffer so with sickness but some day I will know and understand. I just knew it.
    That began my journey with God. My awareness and so to speak “peace with my defects”. We moved many times dad being in the military and settled finally when I was five. By age six after school on Wednesdays my siblings and I went to Good News Club learning Bible stories and memorizing bible verses weekly. By seven I was saved and at age 16 the Good News Club teacher who gave me my only job at $1 an hour bought me an expensive Bible because we were moving again and marked what became my favorite verse in it. Proverbs 3 vs. 5, 6 I read through that Bible twice before graduating high school. many more times since and I still read that Bible.
    I say this about my defects and sufferings that are connected. I have no hope here but all my hope is in a future in Heaven when I will have a new body and be given a new name. A better name. From barely beyond a baby suffering and sick on a floor in El Paso, Texas to a future of no suffering with God in heaven. Hope!

    Reply

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