I was working in Times Square doing the whole corporate scene and was so tired all the time. I was trying to pretend like I didn’t have this disease and I could be like everyone else. Any time off I had, I needed to rest, almost to the extreme of not being able to get out of bed on the weekends. It was hard, but I had to step back and step away from the money and reflect what I wanted my life to be. I could make money and never have time or energy to spend it, or I could take care of myself.
I made a bold decision and never looked back. A little while later, an opportunity to work at the Hereditary Neuropathy Foundation (HNF) crossed my path and I jumped at it. It’s been a few hectic months, but the feeling of value to my daily living is worth all the money in the world.
The Hereditary Neuropathy Foundation supports those of us with Charcot Marie Tooth (CMT). With a recent grant from the CDC (Centers for Disease Control), HNF has launched a great website, www.help4cmt.com as a resource center for people with CMT, caregivers and medical professionals. It is growing every day. It is a great resource for me and others affected by CMT to have everything in one place!
I work hard to inspire other CMT patients. As cliché as it sounds, stay happy. Count your blessings. Be thankful for all the good in your life. Yes- we have our bad days, but we have good days too. Also, do whatever it takes to live the life you want. We only get one life. If that means taking a loan out to get the helios braces so that you can walk, DO IT. If that means taking a different job so you have more time to work out, DO IT. If that means pushing your body a little harder to increase muscle strength, DO IT. Live YOUR life to its fullest, whatever that may be for you.