Taking a page from Annette’s book (or blog to be precise) I’ve decided to start writing about my life with MD and how disease changes almost everything. That’s right; I’m outing myself as a person with muscular dystrophy. You have no idea how many years it has taken me to be able to say that. I have muscular dystrophy, I am disabled, I am crippled – and yes, it sucks almost all of the time.
For years I hid it as much as I could, lying about why I had trouble with stairs. The lies came easy, “I twisted my ankle or my foot is asleep.” And people seemed to be content with lies. It wasn’t until the disease progressed to a point where I couldn’t hide it anymore that I had to stop lying to myself as well as everyone else.
I got a ton of support from my sorority sisters, who were some of the first new people in my life I told (new people meaning people I met after the disease struck). And to this day they continue to support me. Someone will pick something off the floor that I have dropped, or another sister will take the elevator with me so I don’t have to ride alone, they understand I can’t help with the physical stuff or participate in certain activities and have always been great about letting me take on the “clerical and organizational” type duties. My coworkers pretty much fall into that same category of understanding. Whenever we are walking in a group, at least one person will lag behind with me to keep me company. In a lot of ways I am lucky in that the people I work with or volunteer with are understanding.
I have a feeling this blog will unfold like a non-linear film. I predict I will go back and forth in time from the first signs that something was wrong to today’s good and bad moments.
I’ve lived in silence and with lies for too long, and I’m finally beginning to understand there are people out there who accept me and my disability. There are people who want to know more and I hope to be able to give those who want to know some insight into my world, to my life with MD.
It is not my intention to make people feel sorry for me, in fact that is the very LAST thing that I want. What I hope this blog accomplishes is to open up conversation and understanding and maybe, just maybe someone else out there will be able to relate to what they find here. That being said, I feel it’s important to address the darkness that comes with disease. There will be times when the disease gets the best of me, mentally. Please don’t mistake these times for a cry for pity, rather a request for reassurance that I’m not alone – that’s all.
I hope you stick with me through this journey because I have no idea where it will go, but wherever we end up at least you know I almost always get the good parking spots!