Time truly does fly! It seems like only yesterday that I said “I do!” to the most beautiful woman in the universe surrounded by our friends and family. But, it wasn’t yesterday. It was twenty-six years ago!
Last night I said, “Marriage isn’t for the faint of heart.” Why? It is a constant challenge to take care of someone you love through good times and bad times. There are a lot of good times, but along with that come life events that can be very challenging causing strains and stresses. We have had our share of life events seeing each other through health challenges, the loss of family members, career changes, the loss of pets, and so on. However, that doesn’t mean we love each other any less. As a matter of fact, those events help make our love for each other stronger.
I have to admit, when I was dating, I didn’t think I would ever find a woman to marry and spend the rest of my life with. I found that many women want a man with a strong muscular body which is something Charcot-Marie-Tooth (CMT) didn’t allow me to have. It became very discouraging, to say the least. I remember one girl who said behind my back “I want a man with a real body!” Yup, that hurt. I wish I could say that she was the only person to mark that remark or similar ones.
The best advice I can give to someone who has CMT and looking to get married is to share everything single thing about the disease with the other person. Share what you know especially your personal experiences. Share what you have read providing them copies of all your reference materials, and direct them to all websites you find informative and encourage them to research on their own as well. If you belong to any support groups on social media like Facebook, share it too. I can’t emphasize enough to share, share, and share your own experiences and what you learned from your doctors. Why? So there are no surprises should the symptoms or issues develop after you are married. Granted, remember CMT affects everybody so there is no guarantee you will experience what you share.
Before I proposed, and after a good bit into our relationship but before it got serious, I shared with the girl I was dating, and possibly going to marry, the prognosis the doctor provided me. Also, I shared information I had researched at the National Institutes of Health with a buddy. I was surprised that it didn’t scare her off. Twenty-six years later, we are still happily married.
Basically, it comes down to this: the person you are going to marry must understand that CMT is what many people call an invisible disease, except for the hands and feet, and there are times when your symptoms are beyond another person’s understanding. The most challenging is when opposite symptoms are happening but are true. An example, I’m cold but I’m hot. For me, that means my feet and lower legs are cold but the rest of me is warm.
And, to her credit, I am healthier being married to her than I might be as single because she has provided many ideas and suggestions on how to take care of myself. Her encouragement along the way has been incredible. Also, it’s a huge blessing to have someone around who truly loves you.