Thursday, September 8, 2011

A Post From The Hubby

Hi everyone! My name is Zuke and I'm Melissa's husband. When she told me she would be trying to post everyday for the month of September, she then invited me to contribute some posts as well. This isn't exactly normal for me; I don't think I've posted to our family blog in years and I only update my tech-site a couple times a week!

When Melissa and I first met, I learned very early on that she had CMT. She was very open about it and matter of fact, so I knew that it was nothing to really be bothered about (and frankly, not the scariest thing your new girlfriend could drop on you); "Sweetie, I have something I need to tell you. I used to . . . "

Knowing nothing about CMT (it's a country channel, right?), I immediately hit the internet to search for whatever info I could find. High arches? Meh, no big deal. Hammer toes? Better than hammer pants. Curvature of the spine? She looked fine to me! What the information didn't share with me, however, was the effect it had on a person's quality of life. Fast forward a few years, and it all seems second nature to me now; she will get tired faster than me, she won't be able to do everything I can do, she will try anyway, and she will feel bad about it.

It may sound as though I'm bragging, but house cleaning is not a difficult chore to me. Being raised by a German/Japanese parental double-team meant that you did what you were assigned and you did it FAST. Our kitchen takes me 20 minutes to spic & span. Our living room, only 10. And while I know she appreciates what I do around the house, I can always tell she feels guilty that I "had" to do it. The same chores take her much longer and end up sapping her energy in ways I simply can't imagine.

The guilt isn't just limited to house work; our daughter seems to be a living reminder to my wife as well. When we found out we were pregnant, the obvious question (other than "How do you raise a girl!?") was whether or not she would inherit CMT as well. With her previous child, Melissa had dodged a bullet that Addison would not be so lucky to avoid. When the test results came back that Addison had indeed inherited the disease, Melissa was beside herself. Looking back, I realize that I didn't react as much because I was pretty much clueless; I knew how Mel coped as an adult, but never knew of any of the pain she had as a child.

I think logically she knows that there's nothing she can do about having less stamina or Addison inheriting CMT. But at the end of the day, when she's physically exhausted herself trying to keep the kids from destroying the house or killing each other, when the wear of the day has ground her joints to a halt, that's when the real side-effect of living with CMT shows itself. The one Wikipedia fails to mention and most doctors who only treat your symptoms never know about:

The sheer emotional fatigue that the weakness, pain, and guilt has left you with . . . and the knowledge that it will be the same tomorrow.


Bryan Schmidt said...

Wow. Wonderful post Zuke. It definitely has a different tone coming from her husband who sees her everyday. As a friend, I see Mel maybe once a week, if that, and she does a very good job at hiding/masking the trials she is going through. I never knew to what extent CMT affected her. Yeah, Mel talks about it in her posts, and in the article, but it's so 'matter of fact' that it's difficult to understand exactly what she's going through. Having it explained from your point of view hit me a bit harder; I actually had to choke back tears at the end there. I admire the love and patience that you show to her; and even more, I admire the endurance and resolve that Mel displays outwardly when truly she is fatigued and possibly in pain at any given moment. What an inspiring couple!

Lenka said...

Wow, amazing post! You captured a lot of truths. I've been thinking about what gets left out of the symptom-list lately, too. And it's so important to hear from the people who are also affected without having CMT. We tend to say, "it's not that big of a deal," when it really is a huge deal. We keep on keeping on :)

Thanks for sharing!

Casee said...

Wonderful post Zuke. You know, it is strange, I have known Melissa all my life and have known for just about as many years that she has been suffering but until lately I didn't fully comprehend. In fact, I am sure I still don't, but these posts have been very enlightening for me. Melissa you are amazing to me! Keep on keepin' on.