The Key to Living a Good Life With MS
Debra searches for deeper meaning in life with MS. Don't forget to read part one of her journey to finding purpose as a newly-diagnosed MSer.
I received my drivers’ license on my sixteenth birthday. I excitedly took to the road and never looked back. For 30 years, I savored both the independence and the sense of accomplishment I garnered from handling more and more highly tuned performance vehicles.
A couple years back, this all changed. Highway traffic rapidly became a confusing and unpredictable monster. My response times and motion-to-distance perceptions were becoming alarmingly inaccurate.
On more than one occasion, I found myself on the side of the road, gripping the wheel with tears flowing and my heart in my throat.
Multiple sclerosis (MS) had slowly stolen away the cognitive abilities I needed in order to keep up with daily driving. It devastated me to do it, but I turned in my keys.
I now ride the county disability bus anywhere I need to go. For the most part, I have to say, I enjoy it.
At first, I resented the disability bus and all it represented. I had always been a fiercely independent person and free spirit.
Unable to come to terms with losing yet another source of pride, I’d take a window seat, twisting quietly away from all that the bus represented, including other passengers.
I spent my time on the ride in anguish. I enviously looked down at all the ‘perfectly healthy people’ zooming around in their cars, going about their business.
It felt unreal to me to not be down there, driving as they did. I felt angry and would not allow myself to believe I might be stuck, forever as a dependent passenger.
I did not belong here. This had to be a mistake.
A Funny Thing Happened on the Way to My Gastro
One particular morning the bus was completely full. For a full two hours, I had to sit in a dreaded aisle seat.
Having no window to disappear through, my attentions were forcibly turned to the space and fellow passengers around me.
What I listened to was laughter and friendly hellos. Mile after mile, I tuned into encouraging attitudes and supportive conversations.
No one seemed to care one bit about what was happening outside the bus (no one but me). I was taken by the fact that though many folks had disability issues far more complex than mine might ever be, they held incredible, almost enviable outlooks on life.
I started to realize that in the large scheme of things, we on the bus were no different than the drivers in cars racing around us. We were all, in one way or another, simply getting on with our lives.
My fellow riders taught me what it was I had been missing. With a purposeful spirit they entered and exited the bus, going to and from community centers, rehab clinics and career training facilities.
I needed to open my eyes enough to my present state, or I would always be stuck in a past that no longer fit with who I was in the moment. I needed to live in tandem with MS and all that it threw at me, both in present and future.
I would always be the person I’ve always been. The difference was, I had to be that person living in open and honest acceptance of the hurdles MS placed before me.
I had been down many dark roads before and had always eventually found the light. I knew what it was I had to do to get there this time around.
So There It Was
MS was not holding me back from living a life of purpose — my attitude and outlook were simply focused on the wrong things. I was trying to live with the tools of my past instead of making allowances in my psyche for the tools I’d need to live with, with MS.
I slowly began to get more open and honest with myself about where I was, right then and there, MS and all. I began to take inventory of what I could not (or could no longer) do as a result of MS and what I could do and/or wanted to continue doing.
My inventory came in the form of journaling; writing down my daily thoughts and ideas. I took out my frustrations and heralded my daily triumphs, all in my journal.
I carried it with me always and writing in it became a new ritual. Already, I had taken on a new method of coping and I’d barely scratched the surface.
It’s Not MS, It’s My Attitude With MS
I also began to look around and reason that plenty of people, who are quite well, are still completely miserable. From my humble beginnings on the bus and from the honesty I read back from journaling, I was beginning to get it.
My health was not the key to all things — it was my daily outlook, working with what I had, that would steer my ship and determine my fate.