Christine A. Hook’s Interview with Melinda Lang
You recently received an award from the CMTA, tell us about your award and how you were nominated.
Yes, I recently received the National ‘I am a STAR’ award, for everything I have tried to do to raise awareness of CMT, and money for research…through the CMT blog, Grace Lines, I write, and the Art de Cure gallery I co-coordinate, which benefits the CMTA. My parents nominated me for the award, and I’m still shocked that the CMTA chose me. It’s a great honor!
Explain how CMT affects your daily life?
Having this disease forces you to adapt. Not only do you have to adapt to losing muscle and function, you have to adapt the way you do the simplest of tasks…like getting dressed, using utensils, turning keys–the list is
endless. I also have had to get used to permanent retirement, as my CMT has progressed to the point where I can no longer work without suffering from pain and exhaustion. Sometimes all the changes you face can be a lot to deal with!
How has the Upstate NY CMT Support group helped you?
It has helped me in so many ways! Before 2010, I never met another person who had CMT, and understood exactly what I dealt with every day. Whenever I told people what I had in an effort to explain my differences, I heard questions like “What’s that?” or “You have a problem with your teeth?” I still hear ridiculous questions like that and more, because we have such a LONG way to go in raising awareness…but now I have friends who hear the same silly things. I don’t feel so alone anymore.
What does the online CMTA community mean to you?
Almost as much as the local support group…it’s support from a distance! Not only can I share my frustrations with CMT-ers around the country, I can support them when they deal with their own. And my blog, Grace Lines, has reached people with CMT around the world, which is exciting! It’s nice to know you can provide support and answers to those who may be feeling very isolated as they live with this disease.
You are much more than your CMT. How would you describe your self ?
I would first describe myself as an artist, as art has always been a part of me, and a writer (though not yet published). I am also a former special education/literacy teacher, an avid reader…and always a devoted cat mom! These things are all a part of me…and I also happen to have CMT.
What else would you like us to know about you?