I have no idea where to start, so here it goes. Hello, my name is Alex. I am 16 years old, I enjoy reading, movies, stand up comedy, spending time with my friends, studying history, martial arts, and the UFC. When I was very little I was diagnosed with cmt, I have a family history of it. I got it from my dad who got it from his mom. Ever since I could remember, all I have wanted is to be a United States Army Ranger. I have always been drawn to wanting to protect people. Last year I finally learned what my dad had hoped I wouldn’t discover, that I would never be able to join the military. I cried for several days, and I still am upset by it frequently. I had lost all my dreams. I never blamed my dad for giving me cmt or from hiding the truth from me, but I know that he sometimes hates himself for it and this makes me very sad. I have a lot more to tell, but as I am writing this in my mom’s apartment I don’t feel like I can write much longer, I’m already crying.
On a more positive note I have tried to search for a career that fits me I have settled upon opening my own private security company, I shall be a bodyguard. I have a wonderful girlfriend named Melanie who showed me this site, and several friends, quite the change from when nobody wanted to play with the “crippled” little boy. I am currently attempting to start taking Muay Thai and Brazilian jiu jitsu to prepare myself for my career as a bodyguard and to find an activity I enjoy.
Hi Alex. So glad you have dreams! So many people your age have no clue. Having a plan and something to look forward to will always help with every aspect of your life. Glad you joined us.
I'm so glad you do have dreams and you are pursuing them and you have encouragement and support! This is vital in accepting and learning to manage the limits the disease imposes upon us! You sound really motivated and directed! This too helps, b/c you are resourceful in finding what you CAN do and focusing there and not dwelling on the "what might have beens". Whether with disability are not, we can all find where we best fit and determined to put our energy into positive proactivity rather then turning the stress inward and defeating ourselves with our attitude!
I too inherited from my dad and he evidently got it from his mother though his symptoms mild and never officially diagnosed, after I learned of my CMT and was diagnosed at Mayo in Rochester MN, then reflecting I realized his mother had it pretty severely. I have passed to my youngest daughter, oldest was a carrier and passed to my oldest granddaughter now age 18, and our son shows mild signs but so far isn't suffering any issues. I understand a parent feeling "guilt" and yet, I know I could not have done anything to change it as I had already had my children before learning what was plaguing me all through my growing up years. I was aged 40 before knowing I had anything serious. Thankful I have my children, and at least they have understanding and can maybe be proactive in limiting the severity; I did many things,pushing to be normal that caused the severity I suffer.
Keep doing what you love, and as my daddy used to admonish, The way to be truly Happy, is to want what you get!" Make the most of everything you can do and learn to manage your disease so it doesn't take over who you become!