“I wonder what people think when they see me.”
That was a common refrain of mine once the symptoms became entrenched and my mobility became compromised. I was never one who liked to stand out in a crowd, preferring instead to blend into the background. MS made that impossible. My inability to walk in a straight line, my tendency to thrash my arms about to maintain balance before the cane became a constant companion, and the frequency in which I would stub my toe and stumble forward because I refused to slow down, made it feel like the white hot spotlight shone on me whenever I was in the public eye.
The idea that people made assumptions because of the disability used to really bother me, and on the rare occasions where I actually fell in public, I wanted to dig a hole and bury myself out of sight from those prying, judgmental eyes.
I don’t feel that way anymore. Quite frankly, I don’t care one iota what anyone who doesn’t know me thinks when they see me struggling. Having said that, not caring isn’t the same as not being curious, because I still sometimes wonder what a person’s perception is the first time they see me.
What do they see? What do they think? Are they sympathetic? Are they afraid? Do they think I’m a freak? Perhaps they are so wrapped up in their own heads they don’t notice me at all.
I try to think back of what my reaction would have been when I had an uncompromised body and was the one observing someone like me today. In all likelihood, I would have given them a casual glance and not give it a second thought. Perhaps I would have wondered what their story was, but would have spent maybe ten seconds pondering that question before focusing on the task at hand. Any thoughts I may have had would have evaporated, just like deleting an obsolete file from a computer.
I was self conscious at first because I wasn’t comfortable in my own skin. Not wanting to appear weak or unsure of myself, I worried that the image I projected made that impossible. I was also hung up on the primary progressive label attached to my MS, which convinced me that I was going downhill fast, which only fed my insecurity.
The most intriguing aspect about having a chronic illness or disability is that you learn a lot about yourself. My self-esteem from a physical perspective was shattered, but over time I learned that physical appearances and ability are not what defines us, although it’s a pity it took something like MS for me to realize that. What I also learned is that that my priorities were wrong.
Career and money were very high on my list, you see. But of all the humbling realities something like MS forces upon you, the one true gift it provides is perspective.
In hindsight, I think family, friends and health were always important to me, but not like they are today. My career had to take a hit because I couldn’t physically handle the stress and demands of the position I was in, and with that came a loss of income, which really freaked me out because the fear of being broke had always been my Achilles heel.
But I was fortunate enough to land in a place where over time I was able to recoup that temporary loss, and the reality of not having to deal with all the crap that comes with being a boss in a middle management position was an unexpected bonus. My ego took a hit at first, but that soon faded as the amount of stress I endured in the work place shrank to practically nothing.
Not having the work distractions I was accustomed to for over twenty years, in addition to having diminished physical abilities, made me appreciate and understand how important family, friends and health were. It’s a cliché, I know, but when your health is compromised, material things don’t matter. What matters is the love and the people in your life.
That epiphany allowed me to step back and reassess where I was and where I was going. Many of the little things that used to concern me fell by the wayside. One of those, although it took some time for me to get there, is that strangers’ perceptions of me were unimportant.
It helped that what I thought “progressive” meant in terms of how quickly my physical ability was going to deteriorate didn’t materialize. Remember, this was almost eleven years ago. I thought that by now I would be unemployed, wheelchair bound, on disability, in searing pain, and unable provide for my family the way I was accustomed to. So I am lucky in that respect.
But the not caring about what others might think evolved because I learned how mentally tough I really was. There is a line in the Shawshank Redemption, where Red talks about his future and the two choices before him: get busy living or get busy dying. I chose the former.
Self-pity wasn’t something I was going to indulge in. I was going to do whatever it took in the way of treatments, drugs, diet, and things of that nature to keep the progression at bay and live as normal a life as possible. I wasn’t going to let MS rule or define me, and a rebellious nature I never knew I had bubbled to the surface. Of course, I’ve fallen a few times, literally and figuratively, but for the most part this has served me well.
Maybe attitude has nothing to do with this. Maybe I’ve been lucky in that the progression hasn’t accelerated like I thought it would. I still think there is a very good possibility what I feared in the beginning will eventually occur, but I was planning on pulling the plug at work in five to six years anyway. I think I have that many good years left. Probably more, if I’m honest.
Having said all this, I still wonder on occasion what people think when they see me, but not for the same reasons I did eleven years ago. I’m curious because I’d love to know if their perception matches my reality.
I seriously doubt it.
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