On the Cusp of Late Onset MS
Two years ago I was at the peak of my career, loving every minute of it and making a tidy buck as well. I’d worked hard for decades and had earned my place in the world. At 46, I was both respected and in-demand.
I was a tough independent world traveler. Life was not perfect, but it was fulfilling and exciting. In the throes of that very busy year, I experienced a few rather alarming mental and physical oddities at times, but I shunned them away. Nothing was going to keep me down.
Nothing, except while in the midst of working a 95-hour week, a hemifacial spasm (an involuntary contraction of the facial muscles on one side of my face) steadily overtook my attention and concentration. The spasm was painful and frightening, ripping me away from the work I had to complete.
My face crunched up so badly it closed my right eye. I could not put this strange happening on the back burner. Looking like Popeye the Sailor, my doctor sent me to the emergency room, thinking I was having a stroke. That was the day the ER doctor walked in and everything changed. He stated plainly, “You have a large brain lesion that must be looked at immediately, it indicates multiple sclerosis (MS).”
Wait a minute. I’m pushing 47, I have shows to fly to, clients to wine and dine, I’ve got deadlines on torn apart projects only I know how to complete. This is ridiculous. This makes no sense. Wasn’t MS something you got a lot younger? It took another eight months to be officially diagnosed on Christmas Eve, 2014.
Denial and Reality
By May, I’d lost my job after having worked 25 years in live event and concert production. This is a tough career track to break into and even tougher to stay on top of your game.
I’d made it and I loved it; the challenge of pulling off live shows in front of massive audiences, traveling alone all over the world to meet up with the crew — it was exciting and demanding. One had to be rock solid and unshakeable in very stressful situations. Grace under pressure, and no room for error or indecision — that’s what drove my days.
Error and indecision did creep in when I tried to get back into freelancing, praying I was not at career’s end. I figured if I rested up enough before a gig, I could make it through.
I was kidding myself, unable to respond to so many people hovering over my shoulder while running the graphic content for who was onstage. My hand tremors and numbness from sitting made the days seem like endless stints in hell.
I had lost my edge and I could not fake my way through it. If my inability to keep up would tank a show I could potentially ruin other people’s careers. This was my worst nightmare and I had to admit my show days were over.
All of a sudden, everyone I knew had a story about someone they knew with MS. The droves of well-meaning tales did not seem to have anything to do with my life.
One similarity in all the stories did get to me; everyone seemed to have gotten MS much younger than I had. It became tiring to hear about how everyone’s friends or relatives had adapted so well to MS and were able to find or begin careers that worked around their symptoms and mobility woes. None of this was helpful for me to hear.
I knew, in my career, there would be no way to accomplish this. I felt isolated and alone. Confusion and fear took over my days.