About this time last year, Melissa Arakaki of Spanish Fork, UT told us what prompted her to write to Utah Gov. Herbert on behalf of CMT Awareness Month. After connecting through Facebook with other people who have Charcot-Marie-Tooth (CMT), Melissa wondered, “What can I do to be more involved in the cause?” She wrote to the Governor and since last year, Utah has acknowledged September as CMT Awareness Month.
A short time later, Melissa now 30, who has been blogging at www.mylifewithCMT.com since 2008, was online when she met four women through Facebook. They all have CMT and started communicating. “I don’t know how we all ended up online at the same time, but we just started talking about our lives with CMT and then a few hours passed by,” she says still surprised at how well they get along. “We are all about the same age, all married, only one doesn’t have kids yet. Otherwise, we are all from different backgrounds, live in different places and are of different religions. CMT is the one thing we all have in common. Then we thought, why not have one place where we can all contribute?” In July of 2012, they started cmtclicks.blogspot.com. “We have had over 2,000 views in only two months,” Melissa reported. “We are just overwhelmed. We thought, okay the five of us will read it and maybe we can talk our families and friends into reading it. But to be able to reach so many people makes us feel really good.”
The sense of belonging is especially important to Melissa. “I had never met someone, in person, with CMT until last October. All my life it was just me. I was very alone in it for so long. I do have an incredible support system at home,” she happily refers to her husband Zuke and their four children, “ but now I can talk to someone who will 100% understand what I am feeling.”
The women: Lenka Vodicka of California, Michele Kekac of Connecticut, Esther Lejbovitz of New York and Nicole Burggraaf of Cananda, post to the site whenever they feel they have something to share. Some days there are three or more posts, some days there is one. “Sometimes someone will post a question about bracing or therapies, etc., and we will try to find information to pass along. We are planning to do a Q & A where anyone who has a question can post it along with a comment. And we’re thinking of having guest posts too.” Melissa’s enthusiasm for the blog is evident. “I can’t speak for the others, but I think it is therapeutic for all of us. For me, it’s a blessing. I have these people who I can connect with on this level. They really understand me.”
A few months ago, Melissa became a facilitator for Utah’s first CMT support group through CMTA. They meet in nearby Orem, UT. “I meet new people at every single meeting,” Melissa says. “There are people who live really close to me, who I never knew existed and who get what it is like to live with CMT.”
There is always something to learn and share. “My ‘aha moment’ was when I realized everyone’s symptoms are so different. And everyone copes differently as well.“ Melissa admits, “It is very much an individual disease.”
I have CMT. I have been diagnosed since my mid 20’s to early 30’s but it’s only gotten bad in the last couple of years. I’m now 52 and there’s days where I have moments that I feel as though I barely can walk because my feet are heavy or I can’t feel or lift or lift my feet. It’s like uncontrollable anxiety makes matters worse. I feel like there’s another explanation for my rapid deterioration but no one seems to listen or can relate. I have aunts in their mid to late 60’s who can stand unassisted and walk better than I which is so frustrating.
Thank you for sharing this blog. I have CMT2K however have yet to meet anyone outside my immediate family who has this.
Thank you for the post about the blog. It is difficult to find others with CMT. Is your blog open to anyone?
I have lived with CMT since I was 12 and now am 59, I am always fatigued have paralysis of my diaphram on one side which makes breathing difficult. I do not have a good support system, which is sad my brother and his family don’t get it. My husband and my girls don’t realize how I feel, the fatigue the pain and the weakness. Some days are worse than others. If anyone has any suggestions on something that helps you feel better I am open for suggestions. My Dad had CMT but condition was not as severe.
I have had CMT for most, if not all, of my life. I was not diagnosed, until age 12. My parents did the best they could, but I know they were not sure how to handle it. My wife and children also do the best they can. And they do better than my parents did. But, you’re right, Janice, there is no way they can completely understand. I find spending some time on sites such as this is helpful. On the rare occasion I get to talk with someone in person, it is always helpful. Otherwise, I keep busy helping others. I was a practicing clinical social worker for over 20 years. Now I use those and other skills on volunteer jobs.
I would love it if those closest to me fully understood what I experience. It will never happen. Not because they don’t love me (believe me, I have gone there, at times), but because they simply can’t. No more than I can fully understand what my severely mentally ill relatives go through.
Keep looking for support where you can get it.
Thanks to you Lenka, Melissa, Michele, Esther, and & Nicole for getting involved and including us. You are already changing lives of so many with CMT. Yes, exciting times ahead. Look forward to continued collaboration.
Thanks for this interview! I am so blessed to have this community in my life. The Internet allows us to find and support one another. I am like Melissa in that I am the only person in my family with CMT. Hearing someone say, “I understand,” is a huge gift.
I am so excited for our little blog! Exciting times are ahead. We are going to change what it means to live with CMT. I believe 🙂
Thanks again! Keep up the good work!