The Inevitable Question: A Personal Essay for Limb Difference Awareness Month

April 23, 2018

 

April is Limb Difference Awareness month. In honor of this, I’m sharing my story in a public forum for the first time. I am blown away by the efforts of groups like The Lucky Fin Project and people like model Rebekah Marine who bring awareness to and normalize life with a limb difference.

 

  “What happened to your arm?”

 

I’ve been asked this question what feels like a million times.

 

The simple answer is, “No one really knows.” I was born in 1981, a time before 3D ultrasounds, a time before knowing the sex of your unborn child was common, a time when most pregnant women relied on and trusted their doctors to help make the best and safest choices for them. There was no Google, Facebook mom groups or texting to help broaden the expanse of people and information available to expectant women. The day my parents met me, they saw that my left arm was shortened and did not bend in the usual way, while my hand was missing a thumb and two fingers were fused together. They were scared, but they were also nothing but loving, encouraging and supportive from day one.

 

Most of my life, I tried to hide my arm. I hoped people who met me wouldn’t notice right away or, if they did, they would have already gotten to know me as a person and not turn away. I tried to be as much like everyone else as I could. I took gymnastics in elementary school, and I made it a point to buy a manual transmission Mustang when I was in my early 20s. Dating and sex are an entirely different story – one that I could speak volumes on – but to suffice it to say that I am married, and my husband couldn't care less about the fact that I’m “different.”

 

One of my biggest fears when I thought about becoming a mom was actually caring for an infant. How would I hold him? Feed him? Dress him? I’m proud to say that I did all of those things and thrived, though no one knew how much thought and effort went in to everything – from diaper changes to steering the stroller. Seeking special treatment and admitting just how hard some tasks are has never been something I’m comfortable with.

 

There are times when it’s all still difficult, and times when I don’t want to deal with stares from children or answer questions. Generally, however, I’ve had positive interactions with those who have approached me. My answer to children who ask what happened to my arm is to say, “That’s just the way it turned out. We’re all a little different, right?” This usually leads them to talk about how someone they know has something – wearing glasses, not having hair, you name it – and they make the connection that it’s not a big deal.

 

So, what did happen to my arm? Any number of teratogens may affect the development of an embryo, ranging from radiation to maternal infection to drugs. In my case, the most likely cause of my anomaly was anti-nausea medicine given to my mother. Already underweight when she found out she was pregnant, she became very sick and was unable to keep down even water. The prescription was a godsend, and I certainly don’t fault her for taking it. Over several years prior to and after my birth, a multitude of lawsuits were filed against the drug company by groups of parents who felt they had been deceived about the safety of this medicine, a derivative of Thalidomide. Even if you don’t know the details, you’ve likely heard of Thalidomide. You need only go back to Billy Joel’s “We Didn’t Start the Fire” for the reference: “Starkweather / homicide / children of Thalidomide.” (Click here for more information on the Thalidomide controversy.)

 

The lawsuits went nowhere. One study would prove that the medication caused birth defects while another would contradict those findings. The drug remained on the market in Canada, but US production ceased in 1983. In 2013, the US FDA approved a new formulation for women who showed no signs of improvement in their nausea after diet change and non-medicinal treatments. More technical and scientific information is available through a Google search.

 

And now for some advice: if you see someone with a limb difference, pause for a moment to think how you would feel if that were you. If you want to ask a question, do it – but be tactful. We’re all the same, limb difference or not – wanting to be loved, accepted, and celebrated for the people we are.

 

There are many books available for children that help normalize limb difference. Check out some of my favorites:

 

  • Purr-Fectly Lucky by Kimberly Palmucci: the story of a 3 legged cat who is adopted from the animal shelter

  • Different is Awesome by Ryan Haack: the story of a child who brings his older, limb different brother to show and tell and teaches the class that he can do anything they can, just a bit differently

  • Uniquely Me by Trace Wilson: the story of a little boy having adventures and learning that his limb difference doesn’t stop him from doing what he wants to do

Please take a moment to check out The Lucky Fin Project, which is doing amazing things for the limb different community.

  

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