MS is not a suffix at the end of my name. My life with MS, is just my life. 15 years after my diagnosis an MS-free existence is as foreign to me as all night study sessions and the days when my RDA of fruit could be met with grape jello-shots and strawberry pop-tarts. That was another life. One that would hopefully seem strange and remote to me now regardless of my health status. My life with MS is not a separate thing. My life with MS is just my life.
When I was diagnosed I expected everything I knew about myself to change. Suddenly I was a Person With A Disease. I didn’t know what that meant but I was convinced I was about to become someone else. A statistic. A sick person. Irrelevant. Nothing else about me would matter. The first and most important thing people would learn and know about me would be that I had MS. I was terrified of how others would perceive me but more importantly of how my own sense of self might be lost to a new reality. This identity crisis which threatened to convince me I was ‘less than’ for simply having a disease, was as disabling as any physical symptom I’d experienced.
The early years of my diagnosis brought about massive changes to my life. Optic neuritis meant I was no longer able to drive a car. Weakened legs caused me to change apartments because of stairs and I was forced to leave my job. MS introduced tremendous challenges to my world. But that’s not the whole story. It seems at best cliché and at worst sacrilegious to admit but there have been some positives. Eventually I took the crisis as an opportunity to re-assess what is important to me. It helped me clarify my priorities. I do what I love.
Over time I have adapted to my changing physical body and circumstance and surprisingly I haven’t stopped being me. I didn’t become ‘less than’. In fact in some ways it could be argued I became more me. The things that are fundamentally Alice cannot be altered by a disease. I am incontrovertibly a story-teller, a traveler and a lover of life. A singer, a volunteer, an art loving, wine drinking, dog mum. I am empathetic, enthusiastic, creative and kind. I am curious about the world. I am an advocate and an ambassador. I am a foodie, a fun time, a baker and a homemaker. An optimistic, advisor, a student and a teacher. My life as an artist, a wife, daughter, sister, aunt, friend, these are the things that define me. I am not my job, my car or some stupid apartment. MS is not the most important thing about me, nor is it the most interesting. I am not MS.
Peace didn’t arrive overnight. Every loss has been mourned. I must consider X, Y and Z each day and while it’s true most may not, they have their own alphabet soups to contend with, full of realities and problems completely foreign to me. As novelist Tom Holt says, “Human beings can get used to virtually anything, given enough time and no choice in the matter whatsoever.” We can adapt. The degree to which we are able to reconcile and coexist with calamity is the degree to which we are able to find our peace.
Grieve the changes. Adjust expectations. Live your life.
Life with MS is complicated. We argue a lot. But it’s my life and I’m grateful for it.