A Diagnosis and Then What?

When I was diagnosed with Charcot-Marie-Tooth, it was in the ‘80’s and I was around 22-years-old. Did I ever have the life sucked out of me!? That moment did it!

As a young man finishing my college degree, the news wasn’t helpful because I had many plans for my life. I was going to find the perfect job in the perfect location and the perfect wife. All of a sudden, these perfect dreams seemed to disappear. The job might come together, but, would a woman want to marry a guy with the physical struggles I would have? My thoughts were not likely.

It was at this point that I began to be depressed. I remember thinking “why me?” “Why can’t I be physically fit like other guys?” “Why can’t something in my life be normal or, at least, not a problem?” I don’t think I ever wished it on someone or would I want to do that. However, I did wish it away more than a few times. I’ve lost count on the times I have done that.

Back in the day, the doctors were not very positive about my future. That was not good. I began feeling like the world was ending and this was it. As I mentioned, I was too young for that to happen.  However, the world wasn’t really ending. Yes, the diagnosis was real and the medical world only knew so much about the disease and it sure seemed like it was. But, it wasn’t ending. I have wondered over the years if an emphasis on regular physical exercise, better diet, and nutritional habits would have been more beneficial than telling me what I will not be able to do.

Why? To this day, I can remember what the doctor said I would not be able to do. It was a long list of things. In my opinion, that needed to be shared with me but a long list of positive things I should be able to do should have been shared too. He mentioned that swimming would be good for me but not much else.

Nowadays, I “interview” my doctors. I discuss my overall health and Charcot-Marie-Tooth. I look for someone who is positive and will help me to see the positive in life and my abilities. Unfortunately, I didn’t know about this until I got married (yes, I got married- more in another post). Anyone who has anything to do with my health needs to have the positive attitude of “anything” and “everything” is possible.

Today, I am not able to run. I am able to walk. And, I am able to walk much further than my original doctor of some forty-years ago. I swim, I go places with my wife and dog and we adapt if need be.

Another point I will make is to learn all you can about Charcot-Marie-Tooth. Don’t just take your doctors word or what (s)he says it will do to you. Read and learn. With the internet, that’s a much easier thing to do these days. If it’s too much for you to read and learn about your disease, then have a friend who will help. I had a few girlfriends who helped me to learn more and were an excellent inspiration.