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.”