Living with Congenital Muscular Dystrophy (CMD) can sometimes feel like a battle with an invincible enemy that's inside of me all the time. It knows me better than anyone and exploits every weakness that I have. It fights me every moment I am awake. Its progression is slow yet insidious. It’s a scary thought when I really wrap my head around it.
But this post, my friends, is no sob story. Knowing and accepting the fact that my CMD is not going away is no reason to just give up on life. For me, it’s the exact opposite: it drives me to make the most of every day. I don’t consider myself to be particularly special. I don’t consider any of the things that I have accomplished to be anything extraordinary: I simply do the best I can with the abilities that I have at my disposal.
Over the last several years, I’ve been speaking at conferences for people with various forms of Muscular Dystrophy, focusing mainly on individuals with CMD. While I was initially reluctant to speak, I slowly began to see that my presence and discussions about my life had an effect on the people, families, and doctors that I have had the pleasure of meeting. I have also seen the struggles that these groups have to raise funds to help others with MD, including CMD. Sharing our positive stories aids doctors and scientists to find and research breakthroughs across diseases, which accelerates treatments and cures. It also helps care for kids and adults affected by Muscular Dystrophy through medical clinics. It even empowers families with services and support nationwide. It shows people that they can self-advocate.
Think about all of the things that make being alive so beautiful. Think about laughing so hard that your eyes swell with tears. Think about the way your heart races when you see the one you love. Think about driving on the highway with the windows down and your favorite song is blasting on the stereo. Think about your favorite food. Think about all of the things that make you smile. Think about all of the memories that you will cherish forever. There are so many reasons to keep going and push through your struggles, difficult as they may be.
There are many reasons that I continue to make the most of my life. I do this for my family and friends who have gone out of their way on countless occasions to allow me to excel. without their help, I would not be the person I am. I do this for the other people with CMD, especially the younger kids, so that they can see that anything is possible. I also do this for those who said that I would never be able to accomplish many of the things I have: your words and opinions gave me the drive to do the things you believed to be impossible. I am thankful for each and every one of you because you made me the person I am today.
Friends, if you’re as thankful as I am, find ways to show your gratitude. Advocate for yourself and others. And if you are able to and you feel like helping out anyone affected by CMD, please do not hesitate to go to Cure CMD’s donations page. Do it for the other people affected by this so that they can show that their lives are not sob stories. People with CMD are not weak: we are powerful beyond measure.