I inherited CMT1A through my family, although I was unaware of what was affecting me until I was seven years old. As a baby, I was unable to lift my head at the same time as my peers and it took me a little longer to learn to walk. In fact, it seemed like every stage of life had its challenges and that I did not look exactly like what everybody else was doing.
As a child, this came with its own set of challenges beyond the physical. I grew up in small-town Texas where sports were a pretty big deal and, despite my drop foot and general weakness, I attempted to participate in them. Being a competitive soul, I was frustrated when I was not able to excel at sports like I wanted to. Despite these challenges, I did become a team manager and this same spirit of competition and striving for excellence still enhances my life today.
A Lifetime of Coping with CMT
Now that I am in my 30s, my CMT symptoms have worsened. My house might not be 100% clean 100% of the time, my hands fumble, my peripheral nerve pain can feel like pin pricks from a voodoo doll, and I am fatigued more often than not; all of these things can range from inconvenient to plain irritating. However, despite these symptoms, I have also inherited the ability to think creatively and resourcefully. There are many tips and tricks that help, along with a great team of supportive friends.
As I am preparing for my upcoming marriage, I am grateful that my fiancé is ready to provide for me as needed. My independent spirit of “I can do this” has shifted to allow Jeff’s helping hand and partnership in the kitchen, at the stores, or at a football game. As with any other team, we work through obstacles and build our relationship together.
While CMT is not rare to me, it is to others. I try to educate those around me that I may get from point A to point Z differently, but we all get to point Z differently. Hopefully, we can help each other with our individual strengths along the way.
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Shayla, I’m in awe of your spirit. I was married to Jeff’s uncle Bill for quite a while. I’m so happy you two have found each other!