2 out of 3

Life is so perfect, even in its apparent disastrous ways. I thank God everyday for His presence in our lives and the knowledge that no suffering comes without a cause. With that in mind, I wake up every morning and find strength to ignore the screams from my legs and hands and the deep desire to stay in bed, give into the numbness and the pain.

Hi, my name is Milena. I'm Michi´s younger sister (25). I, unlike her, have no talent to keep a blog. I truly admire the people who do. I specially admire my sister who has always been an example in my life; a true light in the dark.

Michele and I have always radically differed when it comes to exercise. I have always been very active; I loved to work out at the gym with weights. I danced, swam, hiked, practiced yoga --and managed to do all these with regularity. One day I was at my desk at work when I felt tingling sensations in my right arm. I was 23 at the time (the same age Michi was when she was first diagnosed with CMT). I went to the hospital but they couldn’t figure out what I had so they immobilized my arm up to my elbow. A couple of days later, the tingling hadn’t stopped, so I went back to the hospital and this time they changed the cast to one that reached my shoulder. I returned home but 6 hours later was in the emergency room screaming from pain and begging them to remove the cast.

Milena doing yoga in 2007

After that day at work, we all began wondering if I could possibly have CMT too. We weren´t aware then that it also affects the arms. So I fooled myself for some time thinking it could be something else. Two weeks later, tingling and pain spread to my left arm and 2 weeks after that it spread to both my legs and feet. I started feeling numbness in my feet as I was walking to physical therapy one day and suddenly couldn’t take another step.

Life changed drastically since that first tingling sensation. I was forced to quit college, stop working, sports and any hobbies that gave me a work out ... Michele had the patience to sit on the phone with me and hear me talk on and on about everything she always felt. It was a new and scary world for me. She took my hand and showed me the way when I was so overwhelmed and afraid that I couldn´t even think of the next step. Kalila, our other sister, the only one who doesn´t have CMT, was the best 'nurse' anyone could ever hope to have. She washed and brushed my long hair... She helped me eat, and sat beside me when I cried; whether it was because I was in too much pain or because I missed my old life. A life, I realize now, I´ll probably never go back to.

Me, Milena, and Kalila

Time passed and I got used to CMT and learned to live with it. Now I’m back in school, started practicing yoga again, and with the help of my boyfriend went back to walking/jogging. I jog for like 2 minutes without stopping and it feels amazing!!!!

I know God was very good to me, he prepared me through Michele. In all this time and through all the pain, Michi has never asked "why me?" She accepts her struggles and makes the best of it. She is such a beautiful fighter! It´s an honor to be her sister.

While I've gone thru some CMT turmoil, I have much to be grateful for; a comfortable home, food… I am blessed to have a wonderful man in my life who helps me and encourages me to move forward, and most importantly, a family whom I thank everyday for the love and support that has never failed me. Even with CMT, I am happy! It slowed me down, but it won't stop me from dreaming and from achieving the things I want in life.