I hope you have seen any one of the Pirates of the Caribbean (Disney) movies. It will help with the metaphor I am using in this post. (If you haven’t seen it, why not take a break from the day-to-day, grab some popcorn, and enjoy a movie. Come back later if you like.)
So, as the ancient tale goes, the greatest fear a sailor had was to be condemned for eternity on Davy Jones’s ship, the Flying Dutchman. The Flying Dutchman was a mythical ghost ship that was cursed to sail endlessly, never touching land. Those aboard felt the relentless force of waves rocking the deck requiring them to work constantly to remain balanced and upright. And of course, ghost ships naturally could turn on a dime or rise into the air, or even submerge below the surface. Each movement of the doomed ship created a physically unsettling visual and tactile sensations.
Ok - Press pause on that movie.
I imagine that at some time in your life you have had the chance to be on board a water vessel of some kind. You have felt it buoy and tilt. If you had the chance to walk around on the deck, you likely felt how you swayed and wobbled, often grabbing the railing to steady yourself. However, after a day on board, and if you don’t have a vestibular or neuro impairment, your muscles begin to figure it out and you begin to walk with confidence. On the next day, you arrive at port, walk off the ship, and onto the stable hard earth, and what do you feel? How do you walk? How does your head feel? On those land breaks from the cruise, I felt the earth banging into my foot with each step I took. My walk was drunken like a sailor on a port binge. And my head felt thick with sensory confusion. I felt like I do every day now.
I coined the phrase, Flying Dutchman Syndrome. Yes, I made it up.
When I first felt the balance and coordination symptoms of MSA-C, they were calmer on some days and stormy on others. I could be out walking somewhat normally but then after 200 meters I would begin to stagger, wobble, and err in my direction. Over the past 10 months, those sensations and bodily physical actions have evolved into a living constant. I liken it to being cast onto the Flying Dutchman and hence, I coined the phrase, Flying Dutchman Syndrome. Yes, I made it up the phrase, but others created “Coat Hanger Effect” and “Hot Cross Buns”, so what the heck?! This disease should have a plethora of fun terms.
In my experience, the phrase accurately describes the state in which we find ourselves at some juncture of this disease. We feel like we are forever condemned to the unending movement and physical motions. And just when I thought that was enough nauseating senses of perception I could handle, a new one surfaced. I am perfectly stationary and safely supported, but the world is tumbling over and over in front of my eyes. It seems as if Davy Jones has a casino aboard and my world has been turned into images on those tumbling slot machine windows, made slightly worse by my double vision. (Oh boy! Double the tumbling fun!)
Do you feel like you too are on the Flying Dutchman? Do you get to visit the casino? How do you react?
My reaction is not very sophisticated. I hold on to something. I close my eyes. I start taking deep slow breaths. And I wait. I wait for the storm to pass and return to the now constant, rocking of my world’s more gentler seas.
Journal Prompt
Are you constantly living with the feeling of being on board a ship and never docking? How have you managed to cope with the stormy moments?
If you have limited mobility due to MSA, does the lessening of physical mobility make the ship swaying fade?
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