My Multiple Sclerosis Mask
Living with multiple sclerosis (MS), I often feel like I’m wearing a mask.
A disguise of sorts, for protection. But sometimes, it’s hard to tell who I’m protecting more – myself or the others around me.
Whether I’m with family, friends or even strangers, I don’t want to show the exhaustion, confusion or pain that is behind my (often) smiley exterior.
The smiles I present aren’t fake – I choose to live my life with joy and enthusiasm.
Life is incredibly precious. We truly are here today and gone tomorrow and I want to leave behind a positive and lasting impact.
I don’t want my children to remember me wincing in pain, friends thinking about how tired I always look or even my former co-workers reflecting that I just couldn’t handle the daily grind of the office.
Pride weighs heavily in this decision. It’s not as much “never let them see you sweat” as I just don’t want anyone to think, myself included, that MS is winning. My ultra-competitive nature has met its match with multiple sclerosis.
Back when I was working, each morning I’d ride the elevator up three floors to my work area. It was a short ride but in those final few moments before the elevator doors opened, I would lower my mask.
Security footage, if it existed, would expose what MS really looks like as I let myself show signs of pain, apprehension and exhaustion.
It’s hard to focus on presentations, month-end reports or metrics when you are worried about another relapse, your next medical treatment or whether you’ll be able to feel your left hand tomorrow.
But the moments those doors opened, I was grinning from ear to ear and doing my best to operate at 176 percent, all with a twinkle in my eye.
Even now post-career, I continue to wear my mask. It’s a 24 hour a day, seven days a week effort.
I do yearn to take my mask off and feel free of multiple sclerosis.
Sometimes, it happens, when I’m not even expecting it.
The other week, I was enjoying a night with old friends. My buddy was telling a humorous story and while explaining it, he started stumbling over his words and, as a result, ended up using the word “superficious.”
We both started to grin, aware of his error but he continued on for a few more seconds before stopping. Then we looked at each other and just started laughing hysterically.
I’m not sure why it was so funny. Maybe it was how hard he tried to sell this non-existent word, or my nonchalant, head-nodding reaction, as if I totally understood what he was saying.
It’s one of those jokes where you had to be there. But, in that moment – as the two of us keeled over laughing so hard it hurt – I forgot I had MS.
The mask was lifted. I was free in that one special moment.
And that’s the primary reason I wear my mask. I know these moments exist, but if I’m too distracted by how hard life with MS is, I’ll miss out on them. I’ll fall into an emotional and mental abyss, where my thoughts are dominated by this disease.
I’m not alone in this struggle, I know others with MS or similar conditions also wear masks. I can see it during our interactions, when they are talking or even in their pictures on social media. We are acting out parts as we attempt to blend in with others.
Sometimes, this disease pronounces itself in obvious ways. Some are unable to walk, see or even speak clearly. But for many, we struggle with “invisible” symptoms as our immune system wages war on our central nervous system. You wouldn’t know we had MS unless we told you.
To the world, I look, walk and talk just like any other 40-year-old father of two.
I wear the mask because I hope to fit in. I want to survive. I don’t want to live in darkness.
But, in the cruel irony of MS, I need to wear my mask, so I can experience the light.
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Thinkstock Image By: Bulat Silvia