written by Cathy Chester, MS Patient Advocate
As a child I could run, play the game “tag” or “kick-the-can” with the neighborhood kids, ride my bike from town to town, and when I was older squeeze a lot into a day without napping. But in 1981 that all changed when my right leg and hands became weak and numb, walking was difficult, I’d lose my balance and fall to the floor, and unrelenting fatigue confined me to bed.
By the time I was twenty-eight, my symptoms were worse and I consulted a neurologist. He ordered a ct scan and spinal tap that immediately revealed I had multiple sclerosis.
I was shocked, angry, overwhelmed and scared. There was no FDA approved MS medications and the internet was in its infancy. I felt alone with nowhere to turn for help.
Those were the darkest days I’ve ever known. My diagnosis changed the trajectory of my journey as I headed down an alarming blind path.
Today at the age sixty, I reflect on over three decades of surviving, evolving, regrouping and flourishing. As my symptoms progress incrementally there are certain attitudes I’ve adopted over the years that I lean on:
- There’s nothing I can do to change the fact that I have MS, so be grateful for the abilities I still have.
- I can keep abreast of the latest research and findings that may help my symptoms.
- No matter what I face I hold onto hope, positive thoughts and the realization that I can battle this disease like the true warrior I am. Thirty-three years have proved that.
- I won’t allow MS to define who I am.
- Living a life of purpose and compassion fills my soul, and how I face my illness may be an example for others to face theirs.
- My new normal revealed from the start that advocating for others in my community is my life’s mission. If even one person says I’ve made a difference in their lives, then I am the happiest woman there is.
Why am I retelling my story? To quickly reiterate who I am, what I do, why I love being an advocate and Patient Leader and what I actively want to see happen, that is precision medicine, a better quality of life for all and a cure.
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This Article is Provided by: #MSViewsandNews
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