That's My Story and I'm Sticking to It: The Many Ways We Talk About Living with MS

We all have a story to tell about MS. Stories that play out like drama-travelogues, except that our journeys can only be fully mapped in retrospect. But that’s okay with us. We know that life is more about the struggle than the triumph.

We follow parallel roads at varying speeds. It’s like AAA gave each of us a different road map to get to the same destination. I might encounter a big tree limb lying across the road and drive around it, while you might hit a moose and head straight for a ditch, totaling your car and getting laid up for many months. Some of us will arrive later than others and a few will take a detour, never to be seen again.

Not only do we each embark on a unique journey, we can tell many different versions of what happens on the way, flipping perspective, using a familiar plot and playing a variety of parts with each story. It can be a comedy (The Hangover) a tragedy (Anna Karenina), rags-to-riches, riches-to-rags, mistaken identity, Cinderella, Romeo and Juliet, stranger comes to town, or a parable straight out of the scripture of your choice.

Remember Mark Twain’s story THE PRINCE AND THE PAUPER? It took place in Victorian England where class prejudice wielded a heavy hand of injustice upon the poorest subjects. In telling this story, Twain was criticizing people who judge others solely by appearance. Kind of like what happens when we park in a blue space and don’t look disabled to the self-righteous onlooker. In 21st century America, it’s not one’s birthright that determines privilege, it’s what you own in property and other assets. Most of us have the riches-to-rags story in our arsenal of personal tales. We worked, saved and invested—then we got sick and lost it all.

Nobody likes a loser. Ask Donald J. Trump about that. He’s the bully in the parking lot, the disability judge who denies your claim, the new doctor you visited who called you a drug-seeking faker. You can cast and recast these storylines forever with the haves and the have-nots. You might start to believe that the game is rigged against you. Well, it is rigged against you. But take heart. There is also the riches-to-rags-to-riches plot. You started out solvent, then went bust, then crossed paths with the helpers of the world, those elfin good spirits that give you a leg up without calculating what’s in it for them. The pay-it-forward plot. This is one of my favorite stories. Everybody gets to feel good in that one.

Now tell the story of the loser in a different way. You know that honesty makes people uncomfortable, so it’s ten times harder to cough up even the briefest explanation of your mood or physical trials.  Because nobody likes a whiner.  A guy could be in a wheelchair missing a leg and both ears, but if he cops an attitude about it, we all want to push him out into traffic. No shoulder chips allowed on our road trip in this story. We pass plenty of billboards that say Got humility and gratitude awards? Show ‘em and get a full tank of gas free. Take exit 22. (*if we charge you anyway, we know you won’t complain. Your awards are proof that you are a complete doormat. Sucker!) Nobody wins in this story.

One of my favorite stories is told in the BHAGAVAD GITA, the Hindu scriptures. In it, King Arjuna and his cousin, the god named Krishna, sit on the sidelines of a war that is brewing between Arjuna and his kinfolk, who want to kill him and take the throne.  He hesitates to join the fight, fretting over the consequences, his reluctance to kill his relatives, his fear of dying. Krishna convinces him to take to the battlefield despite his misgivings. The message for all of us is that it’s our duty to pick a side and take action—for the simple reason that we are alive and therefore obligated to be actors in many stories. Life takes place on a stage with passions, plots, props, and people. We can’t quit the play until we’re dead.

Good-night sweet prince, Horatio says to the dying Hamlet, in a respectful, tender farewell to a fallen friend. It is easy to be gentle to the dying. But we’re all dying, really. Most of us don’t know our expiration date, that’s all. I like the story where characters are tender with each other no matter how far from death they seem to be. You just never know.

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