There is a constant expectation of peril hanging over my head. The first draft of this story put everyone with multiple sclerosis into the category of “impending danger.” I don’t know if that’s true for all of us, so I chose to talk about myself.
Did periods exist when I was not waiting for the next inevitable round of suffering? I know that because I remember the moments when I was caught off guard and surprised by bad news. That doesn’t happen anymore. While still disappointing, I feel like trauma has become a necessary evil, balancing my peaceful attempts at happiness. So, when I released my novel, Sensations, rolled out of a wildly successful bike MS weekend, and prepared to head back East and celebrate my 30th West Point reunion, the scales were tipped way too far in one direction.
My last MRI was in early 2020. The Covid pandemic pushed my next test off the priority list. My progress was stable, with no new activity or lesions for at least ten years, so there was no urgent need. Everyone seemed comfortable with my slow slide of secondary progressive multiple sclerosis.
“Let’s get a new MRI to confirm everything is stable,” my neurologist said. “Let’s do both the brain and spine,” she said.
I remember thinking, what could possibly go wrong? The corner of my mouth turned upward as I chuckled at the absurdity of my question.
Electronic Health Records are a fantastic advance in modern medicine. I have 1,299 images downloaded to my computer. I have two radiology reports filled with phrases like “prominent white matter lesions,” “cervical cord lesions,” “signal hyperintensity about the right anterior C6/7 cervical cord,” and “syringohydromyelia.” I have had a Google search engine pumping anxiety into my veins since September 29.
I’m trying not to freak while I sit in front of my computer with all this information that says, “Lit Up Like a Fucking Christmas Tree!”
What I do not have is a neurologist telling me how bad this is, how bad it’s going to get, what I can do to fight the progression, or how we’re going to fix the problem.
Welcome to the downside of the VA Healthcare System. I grit my teeth because I have received top-notch care for 23 years. It will not kill me tomorrow or the next day, so my long wait over the weekend was just poor timing. But as Monday turns into Tuesday, and my flight to New York leaves tomorrow, I wonder how long it will be before I get my thumbs up.
So, yes, this balance to my peaceful attempt at happiness is disappointing.
**
In ancient Rome, the fate of losers in gladiatorial combat was determined by the crowd’s will. Their thumbs made the vote of life or death. Thumbs up fulfilled the slave’s defeat with an immediate sentence of death.
In 1917, Arthur Guy Empey wrote a quirky biography titled Over The Top, which talks about the World War I exploits of a Tommy Atkins (“The name England gives to an English soldier, even if his name is Willie Jones”). He used the expression “Thumbs up,” which means “everything is fine with me.”
On more than one occasion, I find it useful to favor the interpretation married with an author’s vivid imagination.
Because it is a fight.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!
Never Stop… Never Quit…®
Please donate today: https://mssociety.donordrive.com/participant/Rogue
