One of the issues that I have been grappling with lately is how this disease has changed the way I view myself. I would like to sit here and say that I am the very same person as I was before being diagnosed with Multiple Sclerosis. But I would be lying to myself to say this. I am different. My body and brain do not function in the same manner as they used to. Each day I must learn to navigate the world in ways I never imagined.
Several years ago I didn't even know what Multiple Sclerosis was. I had heard of it certainly. But it was in the context of some distant and alien planet I never intended upon visiting. I can recall one person I knew who had it. In graduate school I had a professor who had MS. I remember her as a slight woman with eyes too big for her face. Her body seemed perpetually bent or slumped. Some days she walked with a cane and always had students carry her books. I didn't pay much attention to my professor's plight as I didn't understand it. She had us read books about the mind body connection and the healing powers of alternative therapies. I was surprised by her textbook choices then but now I have a different view entirely.
I believe a disease such as MS can push one to the outer limits of possibility. When traditional medicine does not seem adequate to explain or treat this mysterious disease you begin to look for other ways to make sense of things. What was just another class to me back then was really a revelation of this woman's life. I was oblivious to her vulnerability and her attempts to find hope. I all too well understand her mindset now.
My MS has humbled me. My confidence in a black and white world of science and facts has been replaced by human frailty. There are some things which will never make sense despite all the statistics and figures you throw at it. There are many things the mind can conceptualize in logic but which the heart and soul will never understand.
Sometimes I think about my various roles and I attach the label of MS patient to them all.
Who am I?
I am a mom. "Not anymore," I remind myself. Now I am a mom who has MS.
I am a friend. I am a friend who has MS.
I am a writer. I am a writer who has MS.
I am a wife. I am a wife who has MS.
It is a silly exercise indeed. But it gets me to thinking that I will always have this "MS" attachment which lingers after me.
Am I MS? Am I this disease? I can hear most of you crying out, "NO!" and that we will never be our disease. We are people first.
I think about my son who has autism. Some people might call him autistic. This is not politically correct nowadays. You are supposed to put the person first and then the disability. Then there are those who are opposed to labels of "disability." There are euphemisms of "differently abled" or such and such challenged. I once heard a reference for persons who are obese as "horizontally challenged." I suppose short people could be described as "vertically challenged." Do the words make a difference?
One day I may be called "disabled."
Yeah, you are right. Maybe the words do matter.
Sometimes I call myself an MSer. It almost sounds like a swear word. When I have my symptoms I quite often say I am MSing. And on days before my period I am both MSing and PMSing so stay clear.
When I first got my diagnosis I was relieved. I was relieved to know what was causing my symptoms and to have a name for it. I also instantly received an identity. I felt bad for the limbo people who still had no name. I remember the limbo days on one of the support groups out there which shall remain nameless. I felt as though I had to prove myself somehow. I felt the scanning eyes of disbelief as though I was some sort of malingerer wishing to have a disease I was not yet worthy of having. Once you have that diagnosis you can pretty much say any bizarre thing and be better believed.
The diagnosis of MS gave me this invisible card into a private club I really never wanted to join. Nobody wants MS. But if you have it, you might as well have company. All of a sudden I had "my people." To be weirdly wired with limbs twitching is accepted here. I cried over the MS walks and runs just like I cried when I went to my first autism run for my son. People were out there raising money for me! I was now not just a person but a cause. I felt this special connection to Annette Funicello and Squiggy.
Every time I see a wheelchair roll by I feel something different than I used to. That could be me in that chair. Following my diagnosis it seemed everyone I saw was walking funny or had a cane. I was seeing disability everywhere. At first I averted my eyes, angry that these people were certainly following me around, predicting my personal future. But then I understood that I merely had not seen them before as I was always in my own head. There was a cold distance between me and those with such afflictions.
Now I see myself in everyone's eyes.
I have Multiple Sclerosis.
I have fought. I have cried. I have screamed in the shower. I have laughed at the ridiculousness of this humbling disease. I am different. I have this disease now.
But for what it's worth to anyone out there who cares to listen.
I am still me.
Published On: June 22, 2009