Stay in the Game: Some Inspiration for MS Awareness Month
Life is like a Monopoly game . . .
“I am living a game of strategy and chance — a lifelong game of Monopoly. And Chronic Illness is my opponent. “–Victoria Churchill, writing about chronic illness for The Mighty.
Life is like a poker game . . .
“. . . you have to play the hand you’re dealt--but a wise player can play what seems to be a weak hand and win the game.“–Rick Warren
It’s easy to liken life with multiple sclerosis to a card or board game. They both employ luck and strategy. They also include a strong opponent that is clever and unpredictable. Multiple sclerosis is a formidable adversary that engenders these qualities. It doesn’t always play by the rules. But rules are made to be broken. We don’t have to play by them, either. This requires developing new strategies. After all, depending on luck only is risky and exhausting. One needs to step outside the room and play some Sci-fi video games to stimulate and refresh the mind.
For Star Trek geeks out there, the most famous move that ever beat a computer app was the ground-breaking strategy used by Cadet James T. Kirk to game the Kobayashi Maru scenario, a program that tests the mettle of Starfleet Academy command cadets. In it, a starship captain is faced with a no-win scenario. On star date 2280, it is impossible to enter the neutral zone to rescue a disabled freighter and also escape attack and destruction by Klingon battle cruisers.This hopeless situation gives the academy insight into how the cadet might handle a difficult command decision. But Kirk was the only cadet to ever beat the no-win outcome. He secretly reprogrammed the computer to make it possible to win the scenario—thereby turning a pre-programmed fail into a surprise victory by, well, cheating!
Medical research strives to do just that. With MS, our immune T-cells have a habit of chewing on myelin proteins and leaving them in shreds. This makes the game harder to play as time goes on. Age and MS damage weaken us. At times we think life would be easier if we’d just turn in our game pieces and drop out of the match. But, just as in poker, ya gotta know when to hold ‘em and when to fold ‘em. Researchers give us tools such as DMDs to deceive our immune cells so we can stay in the game longer. For example, when you take Copaxone and a T-cell tries to chomp into a tasty myelin morsel, nothing happens. Copaxone has rendered the immune cell toothless. All it can do is gum the myelin with no harm done. Being gummed tickles the myelin so it laughs, charming the T-cell out of its mission to destroy. They become instant friends, traversing the CNS together in harmony and bliss. A clear case of love-your-enemy. Who says science isn’t spiritual?
So, staying in the game is probably the most important thing we can do for our health. But what does that mean?
Here are a few strategies I use to keep my place at the gaming table:
- Stick with the medications schedule. There are rules we should militantly adhere to and those we should break and retool. Injecting, infusing, or ingesting our DMDs and symptom meds will work best if we don’t cheat by skipping them or taking anything but the prescribed dose. Doing so fits under the heading of taking good care of ourselves. We’re worth it!
- Get some exercise. I define exercise very loosely. Here are just five things that kill me, but in a beneficial way:
- Popping up from the desktop computer at regular intervals and walking to the kitchen and back. When I do that, I don’t wake up in the morning with lower back pain.
- Carrying a bag of groceries from the car to the house and putting them away without taking a sitting break. It feels like a real workout when I do this.
- Taking a 7- to 10-minute shower twice a week including hair-washing, then grooming and blow-drying with only one little break. For some reason it makes me feel stronger and more balanced—after the initial fatigue and paralysis wear off, of course.
- Walking a bag of garbage outside to the dumpster with one hand while carrying a 12-pack of Tab with the other, then pitching the garbage bag and walking back inside still toting the 12-pack (you can substitute the 12-pack of Tab for any other weighty item). Only works if you can walk without your cane or rollator for a short while, though, which I can do.
- Vacuum/dust/wash dishes. It kills. The vacuuming I mean. But it counts as muscle resistance.
- Sleep and nap. I rarely sleep a straight 8, so I supplement the 4 or 5 or 6 hours with naps during the day. I’m retired so I can do that. Not so easy if you’re still working. See articles for sleeping tips here.
- Work my memory. I watch old movies and recite the actors’ names, birthdates and spouses—and commit new info to memory with the new generations. It keeps my memory sharp and makes me feel like myself, the movie trivia know-it-all. People hate watching movies with me when I narrate a director’s cut for films that don’t have them. I’m going to die alone, I know. I’m okay with that. Mostly.
Ultimately, doing all this stuff and more is about preserving your thinking and identity. Captain Kirk wouldn’t have thought of reprogramming the Kobayashi Maru scenario if he couldn’t remember his algebra, logic, and conceptual skills.
You and I might have myelin that looks like a Polynesian grass skirt, but that’s not the end of the story. You can glue flowers on the hem, grab your ukelele and take your place at the black jack table. You might not win every hand, but you’re playing the game—just like everybody else.1-3
How many specialists did you see before finding "The One"?