There will be no "How to" bullet presentations from me today. I am not going to tell you one informative thing about your Multiple Sclerosis. I am not going to tell you how to battle or cure it. I am not going to tell you it all sucks nor am I going to tell you how to climb mountains despite having this disease. Today I am simply going to tell you straight up what it is like to wake up knowing that you have an incurable and chronic disease and what that means to me.
I have always been a big picture sort of person. I tend to look beyond the surface to find the deeper meaning of things. Sometimes this gets me into trouble because while I ponder the depths, the details of my life are whizzing by with alarming frequency. You can only reflect so long before life grabs you by the britches and forces you to move along.
And so it is with my dealings with Multiple Sclerosis. What time do I have to think about the deeper meaning of having such a disease when I am experiencing spasms and finding it hard to pick up the fork to feed myself lunch? Or going for a walk and discovering that I might not be able to walk back home without sitting down in the middle of the path to rest. Or attempting to pay the bills and finding I cannot recall if I signed my name to the last check I wrote. It is hard to think about anything but survival when you are in the thick of this.
When I do have time to think about this my mind takes on different hues and subtleties of perspective. One day I imagine myself to be superwoman and overcoming all challenges. On these cocky days I may have an episode and having survived it, I might declare that "I kicked MS's butt up and down the street." I won simply by remaining standing after the MS symptoms have departed. But then I remind myself that however I personify MS, it isn't a person or even a thing. There is nothing to battle against. There are simply lesions.
On other days the naïve confidence that I can take on this disease like one takes on a bully is replaced by solemn fear. The fear dives like a vulture upon the "what ifs" and the future. There it takes hold and breeds until the air in your throat becomes constricted. I remind myself of the seriousness of this disease as in, "I am fine now but what about tomorrow?" "What if I cannot walk or talk tomorrow?" or "What if I can no longer think as I do now...will I still be me?" Question after question come reeling in like some bad movie you can't stop watching. You don't want to go there but the mind takes its own journey regardless of your will.
Then there are the times of utmost gratitude. Like the time recently where I was planning on cleaning my son's room. It was a mess of books and toys and clothes in helpless heaps upon the floor. I felt resentful. I didn't want to drill sergeant him to clean nor did I want to clean it myself. So I sat on my son's bed for a moment. And then I felt it coming. I always feel the MS coming. It starts off as a great fatigue, a sick feeling in the stomach, and/or a feeling of being altered as though taking a strong medication. In these moments preceding my symptoms I never know what they will be. This time was something different. I could talk, felt sensible and with it, but I soon discovered that my limbs did not want to move. It was as though those connections were shorted out like a frayed lamp wire.
Pure concentration would bring a tremble to my hand. I kept telling myself that this was temporary and one of those MS illusions where I knew my ability was still there but I just could not access it at the time. I was like a computer which was in the process of rebooting. My programs were not working. There was nothing to do but sit there and wait it out. I did feel moments of panic and began to cry but without the use of my hand to wipe away the snot and tears I decided that was not a good idea.
As I sat there I did the whole "Why God?" thing. I prayed. I bargained. But all the while I also thought that there was meaning even in this horrible moment. Perhaps more meaning than ever. I glanced at a stain on the carpet. My son had dipped his feet into red paint and had tracked red footprints all over his bedroom carpet which happened to be white. I steam cleaned those footprints for hours and still a pink outline of a foot was left. I was so angry at the time. Now, sitting there, unable to move, the incident seemed funny. So many things in life seem like such a huge deal and then when faced with something which can knock you to your knees or leave you motionless, these other things seem to drift away like seeds from a dandelion wishflower.
"Why are you doing this?" I said out loud to...? To my MS? To God? Sometimes one does wonder who or what is in charge. In the vast universe I realize my smallness. I am just a speck. I am a bleep in the great time line. But this is all I have, my life, and my bug's eye perspective. In those moments of stillness my bravado and superwoman complex were quietly humbled. My superficial layers and defenses were stripped away, and I was left to deal with what was left. Much like the serenity prayer advises, I admitted I was powerless.
It ended up being a temporary matter. Within an hour I was able to be on my feet again. I wiggled my fingers and my toes. I was back to being "normal" again. I bent down to begin picking up the toys on the floor, sobbing as I did so. I was never so grateful in my life to be able to clean my son's room. The resentment I felt upon entering his room seemed like a distant planet. Within that hour I underwent a transformation which could not have taken place otherwise.
To see what is important. To feel gratitude for one's life and abilities. To feel the strength inherent in accepting your powerlessness. I don't need to ponder much more about what all this means. It is a beautiful plan really. The moment I forget these lessons you can be sure my MS will find a way to remind me. It is my belief that someone somewhere knows exactly what they are doing.
Published On: August 16, 2009