How ‘Pirates of the Caribbean’ Reminded Me of Life With MS

Jessie Ace avatar

by Jessie Ace |

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The other night I was watching the “Pirates of the Caribbean” series, my favorite film box set, and it occurred to me how similar life with multiple sclerosis feels to life on a pirate ship.

A particular scene sparked this idea. Two pirates were happily mopping the boat while singing sea shanties. They went about their duties without a care in the world. 

Suddenly, the music faded and silence filled its place. The pirates sensed a change. Fog surrounded the ship as the sky turned dark. 

A loud BOOM struck out of nowhere. The pirates stopped what they were doing, and looked at each other in confusion.

“What was that?” one asked the other, curiously looking around for the cause.

Another BOOM rocketed through the ship, sending vibrations through the boat and ripples across the sea. The pirates threw their mops to the floor and clung to each other, fearing the worst. The rhythmic BOOMs continued, becoming louder and louder until, out of nowhere, gigantic tentacles encompassed the ship. 

Within minutes, the newly mopped decks had been abolished by the tremendous kraken, leaving nothing in its wake. The pirates and the ship were gone. 

You may be wondering, why did this remind you of MS, Jess? 

Because for a long while, I was like the pirates at the beginning of the story. My MS was stable, and nothing ever happened. In many ways, I felt like a fraud, like I was too well to be ill. I went about my day in a lah-de-dah way, taking everything my body could do for granted. I ate whatever I wanted without caring too much about the effect it would have on my body. It didn’t matter if I didn’t exercise that day. 

Skip forward to this year, and I feel like I’ve had my most challenging year yet, even though it’s only May!

A few months ago, my hands suddenly felt burnt for no reason, I went numb from the neck down, I’d get tingles down my spine whenever I looked down, and recently, my leg just decided to switch off. I couldn’t lift it or walk. Combined with the tablets I was taking for numbness, it looked like I was drunk (without the fun part of actually drinking). It was not fun. 

“What the heck is this?” I thought. I realized at that moment how much I’d taken my former stability for granted. 

I was a happy, carefree pirate until the kraken, aka MS, found me, surrounded my ship, and took me down without warning, just like our poor pirate friends in the film. 

Has a film ever reminded you of MS? Let me know in the comments below.

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Comments

Alison McLachlan avatar

Alison McLachlan

Strangely uplifting - I guess to know that 'we're all in this mess together'. I'm in a fair place At The Moment, but can Never take Anything for granted...that ship is fragile, you're right.

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Jessie Ace avatar

Jessie Ace

Thank you and you're right the ship is fragile, we often forget this and become happy pirates that grow complacent and forget everything else. #StayENabled - Jessie

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Ladybug Red avatar

Ladybug Red

Hello Jess,

What was the medication that you were given for numbness of your leg. My doctor always says you just to have to work through it. I don't think he has a clue what to do for MS
Thank you

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Jessie Ace avatar

Jessie Ace

Hi, it was called Amitryptiline, I'm not sure if that's the UK name for it or if you have that in the US? Strength exercises I found on YouTube helped me more I think. Does that help? #StayENabled - Jess

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Glenda avatar

Glenda

Yes, it (MS) catches you completely unaware. You’re the only other person I’ve known to complain of burning hands. My husband says that I’m going to spontaneously combust they are so hot, and that reminds one of X-men. I feel like I could throw fire, not with my eyes, but with my hands.

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Jessie Ace avatar

Jessie Ace

It's a weird sensation, isn't it? My hands aren't hot though it just feels really tight like they've previously been burnt. Strange, like your X-men analogy! I need to watch that again, maybe it'll inspire another article :) #StayENabled - Jessie

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Jenny Orlov avatar

Jenny Orlov

Hello. My hands felt as if they were burning for about 10 years during my early MS days.
This is my 25th year with MS. The hands no longer ‘burn’ but feel numb and are weak.

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Brian avatar

Brian

It can always, always be worse!

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Jessie Ace avatar

Jessie Ace

Exactly Brian :) - Jessie

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Kim Ahmed avatar

Kim Ahmed

Haha...perfect analogy! I feel the same way. Yeah, let’s just NOT release the Kraken.

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Jessie Ace avatar

Jessie Ace

In an ideal world, the Kraken will be banished forever! :) - Jess

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Paula avatar

Paula

I experienced the same thing.... numbness from neck down, tingling spine... new way of life

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Jessie Ace avatar

Jessie Ace

Strangest thing I ever experienced for sure! Hope you're ok Paula. #StayENabled -Jess

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Charles Lumia avatar

Charles Lumia

Lol I love the drunk analogy for our walking. It's walking like we're drunk but without the fun of actually drinking :D

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Jessie Ace avatar

Jessie Ace

So true, right? :)

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Julie avatar

Julie

TERMINATOR (1st movie)
Sarah Connor is living a simple life at the start of the movie. As it progresses, she is being relentlessly stalked by Arnold Schwarzenegger at an exhausting pace. This is a very simplified statement to sum up the movie. MS pursues our bodies like this at times until we are exhausted and overcome. Then the exacerbation occurs where we are finally caught by our own “terminators.” If you recall, Schwarzenegger turns out to be a good guy and is helping to keep Sarah protected as she runs from her Terminator.
In one scene, Arnold says his famous line, “I’ll be back!” We know that even when the exacerbation is over and life settles down again, our Terminator will be back eventually.

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Jessie Ace avatar

Jessie Ace

Love that comparison, Julie! And that line at the end is definitely MS. I've never actually seen terminator - maybe I should?! #StayENabled - Jessie

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L. Joanne Mooney avatar

L. Joanne Mooney

When I was diagnosed 26? years ago I devised a Five F attitude: 1.Faith 2.Freestyle (I swim several times a week) 3.Forget about it (just keep on keepin' on) 4."F' it" and 5.Fiddle Dee Dee
My mom is from outside Savannah GA and the old family homestead was actually used in "Gone with the Wind". It made sense that I adopt 2 famous lines from that movie
The first is when Scarlett is getting dressed, Mammie is pulling the girdle strings tighter(which is the sensation I had when my symptoms first presented). Mammie admonishes Scarlett to eat breakfast and she scornfully replies "Fiddle dee dee"
And then the iconic line from Rhett Butler, "Frankly my dear, I don't give a damn!"
My ability to preform at an independent fairly normal level is my daily Oscar.

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