Muscular Dystrophy

Loving Someone with Charcot-Marie-Tooth Syndrome

By Caged Heart Publishing, published Aug 11, 2006
Published Content: 75  Total Views: 210,848  Favorited By: 21 CPs
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The first time I met my husband was at a restaurant, on a blind date of sorts. He was walking (or should I say stumbling) across the parking lot to meet me, our mutual friends in tow. I thought to myself, “Oh no! I am so not gonna date a drunk!”

I sat through the dinner, making every attempt to be pleasant, but I knew, without a doubt, that this man, charming and witty as he was, was not going to get a second date. Fact is, he didn’t appear drunk. He didn’t slur his words, he didn’t make stupid jokes or laugh too loudly at mine. Then, I noticed a Medical Alert necklace hanging around his neck. While trying (vainly) to catch a glimpse at the ‘disease’ printed on the pendant, I tried just about everything to get a look. I failed. So, when he asked for a second date, without our friends, I said, “I don’t think so. I am not really in a dating mode right now.” And I thought that those words were clear that I wasn’t interested in him.

Wrong! He smiled at me, took my hand gently, and told me, “I have Muscular Dystrophy, it isn’t catching.” I, like most of America, knew ALL about muscular Dystrophy and he didn’t have it! He couldn’t. Now, this man was lying to me! After all, The Jerry Lewis Telethon showed sick disabled children in wheelchairs every Labor Day weekend! We all decided that maybe we would go to a movie sometime, but, really, I think we all just wanted to leave and end the evening.

Muscular Dystrophy

Does loving someone with a medical condition mean loving the condition?

Credit: Simon Gray

Copyright: sxc.hu - no restrictions on use

Takeaways
  • I thought to myself, �Oh no! I am so not gonna date a drunk!�
  • The Jerry Lewis Telethon showed sick disabled children in wheelchairs every Labor Day weekend!
  • There are times when his Muscular Dystrophy challenges us
Did You Know?
Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder, affecting approximately 150,000 Americans.
Comments
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As a woman with CMT it was always hard for me to feel comfortable dating. I was always sure that they only wanted one thing but every once in awhile I was very suprised. My husband and I have been married for 8 years and together we share 3 kids. He is very physical; rock climbing, hiking, camping, etc. and it was hard for me not to be able to do that with him. We sometimes still have issues with his physical ability vs. my inability. But we work through it and find alternatives that meet both of our needs and we are both happy. Reading your article makes it easier for me to know that there are others out there who know what this kind of life is like. Thank you for writing it.

Posted on 03/26/2007 at 2:03:00 PM

 
This was wonderful. As someone with CMT, I appreciate the hope you hold out to others that people CAN work around it. I also met and have been someone as caring and considerate as you. Like you, they decided they could deal with the possibilities. And you're utterly right, we find ways to work around it. Bless you both.

Posted on 02/02/2007 at 3:02:00 AM

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