Dancing in the rain
In passing one morning I mentioned to my David that I was feeling so tired lately. That I felt as though I couldn’t shake off a virus. We both shook our heads and went forward with our ridiculously long days. As the months went by it was almost impossible to stay awake at work and I kept walking into door jams. I had bruises all over my legs. Months had passed when finally I realized maybe it was time for a physical. This is where my journey with MS began. It took over a year, with several doctors, experiencing multiple falls and feeling progressively worse, for me to be diagnosed with Primary Progressive MS. I was 36, the mother of two young children and happily married to the love of my life, and I was given the sentence of having the rarest of the MS diagnosis that only affect 3-15% of MS patients. A sentence of a long slow progression where you don’t get better you just slowly get worse and worse.
The doctors relented that there is no magic pill or injection for me so that I can go back to my regular life - walking without a cane and enjoying all the wonderful moments I should with my family. No, sorry, that is never going to happen. The damage you have is done, never to be replaced; we just need to get it under control so we can slow the progression down. The realization that the exhaustion, this pain, the vertigo, the numbness, the confusion and the cane is forever was life changing.
Out of the 3,500 people affected by Multiple Sclerosis in WNY, 3 are in my family. That’s right 3. Along with my diagnosis 7 years ago, my sister was diagnosed 24 years ago and my sister in law was diagnosed 5 years ago. Our lives have been changed in ways that we could never have imagined. With the help of our doctors, family and friends, we adjust to the obstacles this disease continues to throw at us each and every day.
Although this disease has taken so much from me and so many, it hasn’t taken away my energy to help in the quest to find better treatments and a cure for MS. Buffalo’s Baddest House Party is an idea I have had for a few years. It was thought up during a particularly dark time in my trials with MS. I was in bed 18 hours a day, too exhausted to breath. I began to look back at my life and was remembering a time when I was full of vigor. At one time in my life I was able to DANCE. Any chance I had back in 1986 I would sneak into Underground Buffalo after getting tossed out of the Stuffed Mushroom. Dancing is all I would do there, or anywhere that would have me, for hours. My reality now is that I can’t walk properly let alone throw some moves on a dance floor. I miss it. So I thought that recreating a night where we celebrate that great energy, the music and the moves brought to the dance floor in the 80s was a way to celebrate the possibility for A Cure! Let us bring people together to raise some money to take this horribly, insane disease OUT! Take it out, like wipe it off the face of the earth! A boon to a cure for MS is that we can cure 100s of other autoimmune diseases as well.
Come to join me at Buffalo’s Baddest House Party and set free, “for life is not about getting through the storms, but about dancing in the rain” (Bunny Armstrong)
Do you celebrate your MS Anniversary?