THE MASK OF MULTIPLE SCLEROSIS
I had CoVid a couple of weeks ago. My elevated temperature caused the MonSter to kick in with a vengeance and caused me to converse frankly with the beast as I lay sprawled on my back on the concrete porch, inches from the kitchen door. My legs just stopped working. Forty-five minutes later, with my mother’s help, we somehow shimmied me into the house where I remained for four days, alternating between chills and fever. My mother went home (Thank you, Mom), leaving me to binge-watch Alone on Netflix. Twenty-four hours later, she called to let me know CoVid is now a family affair. Sorry, Mom.)
When asked why I didn’t insist on my husband's return from a camping trip, I had to laugh. He’s a good guy, but being a nursemaid is NOT his calling. I was better off on my own. Especially after the third bathroom accident in as many hours.
This was my first super frightening MS event in years, mainly because I was alone.
My last memorable exasperation occurred at a football game several years ago. It was a perfect day.
I dressed for the promised heat and was happy to wear my newest WVU t-shirt in celebration of (my alma maters) opening day. I had detailed my fingernails with flying WVUs the night before and made certain to wear matching earrings and corresponding bracelets.
It wasn’t only a ballgame day. I had a date.
For the first time since my diagnosis, I was going to enjoy a day without worrying about my disease or the ill effects MS plays on other people in my life. My two- and half-year-old son was with his grammy and today was my opportunity to remember how it feels to have a social life.
I know that sounds selfish and thoroughly self-serving, but I had been very, very good since my divorce. I hadn’t thought about dating or having any type of relationship other than the one I enjoyed with my son.
My date was an old friend from the past. I was happy he asked me to share his season ticket. He knew about my MS, but he did not totally understand the ramifications of the disease. It was too early in our relationship to open a discussion full of something I didn’t understand totally myself.
Talk about a way to scare a guy away!
“Hi, my name is Lisa. I like football and drinking beer. Oh, and by the way, I have an incurable neurological disease that probably sabotages any type of intimate relationship we could ever have, so do not get too close or expect this to continue on as a normal relationship because I do not know what the future holds for me. Let's, Mountaineers!”
It was all good, though. It was a beautiful day. I was going to see my favorite college football team. And I was on the armor a gorgeous fellow. Life is good.
Oh, and it was boiling outside … but I could surely walk the half mile from our tailgate parking to the stadium.
That’s me. No fear.
And I almost made it.
While standing in line for my turn to enter the main gate, a familiar tingling started snaking itself up my right arm. I transferred my game ticket to my left hand when the right one went numb. The promise of a cooler and shaded shelter was right beyond the gate. I could see it. I could smell the kettle corn. I could hear the crowd.
But I couldn't longer feel my ticket as it floated to the ground and fell (rather unattractively) against my very attractive date.
The next thing I know, I am leaning against a refreshingly cool concrete wall while a young university student wipes my brow with a wet cloth. My date had gone to retrieve a cool drink for me and this angel in the colors of y alma mater waited with me. God bless you.
When my date returned with a jumbo-iced lemonade, I was beginning to recover. He suggested we go home. He didn’t mind (But, I could see in his eyes that he did.) I suggested he go on to our seats and I would follow when all my limbs regained their strength. He suggested I must be nuts. He wasn’t leaving me.
I fell in love.
We saw kick-off from our nose-bleed seats and I cooled off enough to enjoy the game. And my date. And the rest of the day.*
— — Chapter10, I Have MS. What’s Your Super Power?, List A.McCombs, 2016
I tell you these stories not to frighten you, but to enlighten you.
Living with multiple sclerosis is living in a constant state of tough love. We rarely know how to plan for the MonSter. It appears on its whim. We learn our lessons and move on.
For this reason, we MS Warriors become proficient at living behind a mask.
Crafting My MS Mask
Most of the people I encounter from day-to-day in my life only ever get to see the mask I put on to hide the toll…
It’s difficult to reveal our genuine emotions when juggling the many facets of multiple sclerosis. I mean, think about it. You know what I’m talking about:
PERSON: How are you today?
ME: Fine, thank you (as I grit my teeth against a multitude of snarky comebacks while fighting to remain standing).
PERSON: Well, you look good. You don’t look sick. You must be getting better! We’ll go dancing soon! (Eyes trying to avoid the trekking poles I clutch.)
ME: (choking back the tears — a combination of hysteria and grief) Yes. That sounds great. Call me.
With my mask firmly in place, I plan to never run into PERSON again.
It’s easy to paint my face and squirt some perfume since the superficial is more attractive to the public than the real me I’ve become. But hiding behind a mask gives me the confidence to wander out into that judgmental public.
SHOULD I STAY OR SHOULD I GO
They say they do, but experience has proven (to me) that we are our own advocates. It is difficult to juggle the responsibilities of hanging out with the MonSter while reassuring others everything is fine, even though it is not. We fight so hard to keep our mask in place, but sometimes we need to let it slip.
A little peak into the realities of the MS world will tell the tale. In the immortal words of the 1980s band The Clash, “you gotta let me know, should I commit or should I go?”
The MonSter Makes Everything Worse
Unfortunately, we the Warriors do not get to choose. We are wed to this disease forever, and with that comes harsh truths. Multiple sclerosis is bad enough but mixed with additional medical conditions and even Super Man cannot combat the kryptonite that plagues us.
I didn’t JUST have CoVid. I had CoVid on top of my MS.
My fever dictated when and where I would pee (or expel any bodily fluids).
I couldn’t walk.
I couldn’t stay awake.
I was dehydrated.
I was scared.
I was alone.
I was living without a mask.
Oh, well. That’s life in the big league.
Lisa, Lady With the Cane
*That gorgeous football date? He is now my husband:)