zaterdag 23 juni 2012

MS most certainly does have me.

MS has wrought an almost incalculable number of extreme changes on my life. Physically, the changes are obvious. Left arm and right and left leg, and I have a wheelchair sprouting from my backside. Changes like that are hard to miss. More difficult to discern are the internal transformations, the changes in mind and spirit.  The MS has dramatically damaged my cognitive abilities. Many MS patients suffer terribly from the deterioration of their memory and their ability to think. My short-term memory isn't what it used to be. If anything, dealing with multiple sclerosis may have actually heightened my senses of thoughtful perception, and has certainly enlarged my capacity to feel empathy for all of those who struggle to simply make it through the day, sick or not.  I've lately come to realize that MS has not only altered my perception of the world around me, but also of the world within me. It's changed the way I think about myself, in some unexpected ways.  When healthy, I suffered from the common delusion of believing in the limitless possibilities of the future. Although my rational mind understood that my youthful dreams of fame and fortune were not likely to be fulfilled, there was still a part of me that half expected some huge stroke of good luck to dramatically alter the course of my life, to suddenly elevate me into the stratosphere of society.  Well, MS pretty much doused those flames. These days, my fantasies have less to do with limitless possibilities than with taking a stroll around the block, though the chances of either are probably equally astronomic. Still, I find myself dealing with the world in a much more rational way. Rather than feeling resentful that my grand imaginary life was being thwarted by the realities of my everyday existence, I now find myself grateful for the simpler pleasures; lunch with a close friend, a nice day for taking photos, or even just a few hours when the pain in my hips mysteriously subsides. Here's a universal truth, brought to me courtesy of Multiple Sclerosis: The biggest blessing on earth is a quiet night at home spent with people that you love.  MS has stripped away the many trappings of life that had become central to my self identity. High profile job in a pharmaceutical industry? Gone with the wind... A little car? Couldn't even get into one these days... Fashionable clothes and fancy shoes? Ha! Putting on my socks is now a painful exercise in acrobatics, and I could just as easily use buttons and shoelaces as I could split the atom... All of those externals that once so dominated my definition of self are now mere memories, and in their place I've gradually come to know a different me, a me that resembles one that I knew a long time ago, back when I was a child unencumbered by the accouterments of adulthood.  Despite the complexities of being disabled, life in some ways is now a much more simple affair than it was when I was healthy. Absent of the concerns of career and social climbing, I find myself free to pursue my whims and desires in a kind of new found innocence. No longer confined by the boundaries of the workaday world, I can be as eccentric as I want to be.  Of course, there are eternal worries about my illness, but somehow, these are different than the ever-changing concerns I had during my healthy life. These new anxieties are immutable, unbending, and worn like a second skin. Unlike most of the problems I encountered before MS, there is really nothing tangible I can do about my illness, so the all-pervading anxiety it produces, while wearisome, doesn't usually overwhelm the mind. I do my due diligence, fastidiously keeping up with all the latest research, and aggressively pursuing my medical options, but beyond that, there is very little control I can possibly have over what MS is doing to my body on a day to day basis. As hard as it was to come to terms with that reality, the only thing left is to let it be. I've found this new me to be much more honest with myself, much less likely to put up with dishonesty in others (especially if they're being dishonest with themselves), and completely disinclined to be convinced to do things out of social obligation. I've learned that saying no is not an act of selfishness when it's an act of self-preservation. Often times I simply don't feel well enough to live up to the expectations that some might have of me. I'm sorry to disappoint them, but if catering to others means that I'll spend the next three days in bed, it's just not going to happen. I'm free to pursue interests and inclinations that had long lain dormant simply because life as a working adult had left no time for them.  Make no mistake about it, having MS sucks in every way it possibly can suck, and I will never be one of those patients who claims that "I have MS, but MS doesn't have me". MS most certainly does have me. But, in a sense, MS has given me the freedom that most human beings lose upon entering grade school. The price for that freedom has been dear, and I would never have willingly paid it, but freedom, whatever the cost, bears with it an inherent sweetness. I've learned that it's okay to savor some of that sweetness, despite the horror and dismay of having progressive relapsing MS. The disease has allowed me the opportunity to rediscover myself, and, I must say, it's been an unexpected pleasure to meet me...

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