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Living with a Hidden Disease

If one speaks to me by phone, I sound perfectly normal. If a client were to ask me to come to their office, I would have to insist they come to mine.

Once the appointment arrives, my wife greets him/her and the two walk to the den where I am perched at my desk, waiting with a big smile and firm handshake. We talk business for a while, have a few good laughs, then it’s time for me to excuse myself to utilize the bathroom. I ask my wife for my walking aid and she promptly retrieves the walker from the closet.

I lift my stiff body up by grabbing the desk from either end, then settle myself with the walker before I move an inch. Everything has to be just right, otherwise I can fall on the spot. After walking gingerly to my destination, I spend perhaps five to seven minutes taking care of business while my wife engages in some small talk with the client. When I return, we pick up and finish where we left off.

More often than not, folks are afraid to ask what’s wrong for fear they’ll hurt my feelings. On the rare occasion they inquire if I am okay, I’ll tell them I’ve had MS for 12 years and that it has progressed to the point where my legs are beset by spasticity and it’s very difficult to walk and maintain balance.

“Oh, I’m so sorry,” one client would say. “There’s no need to be sorry. I’m handling it well,” I replied.

That’s just it. I’m handling it remarkably well that folks don’t realize something is wrong, until I stand and try to walk. Once I tell someone, I’ll get the usual reply that a relative or friend of theirs has MS and they’re either doing well or quite poorly. As for me, I’m somewhere in between a brisk walk of the past and falling and crawling.

MS is one of those neurological disorders that’s hard to explain to someone. They’ll usually ask me what it feels like when you try to walk. I’ll answer with the opening line to a poem I authored several years ago. “Spasticity speaks of crooked paths, where once stood steadfast childhood dreams.”

Then I explain that once upon a time I had aspirations of doing great things with my life, but that I was thrown a nasty curve ball. No, I haven’t struck out, nor do I intend to. I will prevail with this invisible disease and rise above it. I will be thankful for every day I wake up, even if it’s with a consistent, tolerable pain in my knees and lumbar.

Yes, MS is silent, it’s certainly not pretty, but it’s not the end of the world. I’ve had instances where I forgot to do an important business errand and I had to apologize and chalk it up to short-term memory loss, a symptom of MS. I had an embarrassing moment when I was out with a group of people and had a sudden urge to use the bathroom. I peed in my pants on the way to the toilet. I quickly had to splash water and scented soap on my trousers, then dry them under the hand dryer, praying no one would walk in.

Indeed, incontinence, short-term memory, depression, anxiety and inexplicable outbursts are symptomatic of MS. If you greeted me on the street, you would probably see me in my scooter. But you still might not think anything was critically wrong, other than a bad back or pulled hamstring for which I was trying to conserve energy.

Despite my plight, life is good!