None of us thought we were ‘supposed to’ get MS. Is that storyline holding you back?
We all have subconscious stories that we carry about how our lives are supposed to go. Mine — and I’m guessing yours, too — did not include a life with multiple sclerosis (MS).
Perhaps one of the hardest things about my life with MS has been the crushing grief that accompanied the death of my story. Working through that grief to recreate a new story about my life has been, at times, incredibly challenging.
And yet, rewriting the story has been an essential part of my ability to move forward as a person who lives with MS.
The story I had for most of my life was that I would be able to move my body without the use of a walker, cane, or wheelchair until I was “old.”
My life, at my current — and still relatively young — age of 58, was supposed to be filled with adventure: traveling to new places, hiking, scuba diving, and backpacking. I was supposed to be going to concerts and festivals.
In my story, my life would also be filled with beautifully mundane activities, like driving to see my son at his first apartment. Or trying new recipes for dinner parties where I clean, decorate, and cook. I would learn how to do mosaic tiling and plant herb gardens.
In my work life, I would join boards of nonprofits and attend fancy fundraisers where I dance, in heels, and don’t have to worry if the bathroom is accessible.
I might have less energy than I did at, say, 28, but I wouldn’t need to sleep for 10 hours at night and still need a 2-hour nap in the afternoon.
I would be complaining about wrinkles and age spots and flesh that was sagging due to the normal aging process, not due to the past 24 years of MS and the accompanying immobility, fatigue, and stress.
My subconscious story said that a progressive disease with no cure could not happen to a person like me — a person who exercised five days a week, who ate all the right things, who was extremely healthy — or so I thought.
When our stories about how our lives will go fail to be true, we struggle to regain balance and understanding about how life works.
When I was diagnosed with MS, my story of being a healthy person was shattered. I remember thinking, “You must have the wrong person.” I didn’t know who I was anymore. I felt lost and confused.
Still, I understood that to move forward with my new reality I would have to find a way to rewrite my story. Accepting the fact that MS could and did happen to me was the first step. I had to acknowledge that my story that “an incurable disease wouldn’t happen to me” was something I had simply made up.
There was a moment at a friend’s house, years ago, where I picked up a magazine and opened it to a random page. In the column on the right-hand side of the page, a sentence seemed to pop off the page. “Who am I to think ‘this’ wouldn’t happen to me?”
People get diagnosed with MS every day, so why not me? I don’t think ‘why me?’ when the good, unexpected stuff comes my way.
Although I don’t remember what exactly the article was about, I do remember thinking in that instant, “Why did I ever think MS wouldn’t happen to me?”
People get diagnosed with MS every day, so why not me? I don’t think “why me?” when the good, unexpected stuff comes my way.
It was at that moment that something shifted for me. I could now begin the process of rewriting my story as a person with MS.
When we hold onto our stories about how something is “supposed to be,” even after life presents us with evidence to the contrary, we are unable to expand our lens to see other possibilities.
Buddhism says that a human being’s suffering is a direct result of their attachment to believing things are “supposed to be” a certain way. In other words, attempting to control reality, whether through belief or action, is where suffering exists.
But this is precisely where many of us get stuck. We refuse to let go of how we think something should be and accept the reality of how it actually is.
Instead, we often fear that if we accept reality — in this case, an MS diagnosis — and change our story, we are saying it is totally fine that we have MS.
But that’s not what it means at all. Dropping the story of how we think something should be and accepting the reality of a situation never has to mean we like the situation. To be clear, I will never think that having MS is “OK” for me or anyone else.
Facing reality actually means experiencing grief for what might have been. And not wanting to experience that grief is often the reason we so adamantly hold on to our story of how it should have been.
But the price for hanging onto our stories is even higher.
For me, the price was exhaustion. Whether or not I accepted the diagnosis, I was already living with MS fatigue. Attempting to fight the reality of my diagnosis required energy I did not have to spare. Using precious energy to fight the truth was a big price to pay to pretend this all wasn’t happening.
We tend to think that if we ‘put down our swords’ and allow ourselves to move into acceptance, we are just going to succumb to helplessness and defeat.
I know it seems contradictory to say that acceptance provides relief — until you’ve done it.
We tend to think that if we “put down our swords” and allow ourselves to move into acceptance, we are just going to succumb to helplessness and defeat. No wonder we want to continue to battle against what is.
Even the language we (and others) use when discussing our disease often encourages us to fight:
“You can fight this.”
“You are a fighter.”
“Stay tough and strong.”
“MS doesn’t know who it’s messing with.”
All of these well-meaning words encourage us to fight acceptance.
Yet, once I began to truly accept my diagnosis, I began to experience relief. I soon had the emotional energy to rewrite the story of my life based on what I have to work with now — a life with MS.
Although MS blew apart the story of how I thought my life would go, I have had some surprising — and fabulous — “twists to the plot” since then.
For example, I would never have imagined being married to my incredible wife. But because of the worsening of my progressive MS, I left my private practice and began searching 13 years ago for a job that would provide medical insurance. I found one at a nonprofit agency where, coincidently, I met and fell in love with the person who later became my wife.
I would never have imagined having my amazing son. I would never have imagined living in Colorado, let alone in the beautiful home that I own.
All these things were unplanned and yet, I would never have wanted to miss out on a single one of them.
Resiliency is the ability to change and shift with what life presents to you.
A rigid stick going down a river will snap in two if it gets stuck behind a rock. But a stick with some flexibility will be able to bend and maneuver out from behind the boulder and float on down the river.
Dropping your story and flexing with what life is presenting you will keep you resilient and in one piece, rather than being broken and stuck behind a rock.
Creating a new story that now includes MS does not mean you no longer have goals or hopes or dreams. It just means that when life shows up differently than you thought it would, you are flexible enough to make the shift that the new situation requires.
I don’t know the ending of my story. I try to stay open and curious to what the next chapters hold for me because, after 24 years with MS, I know the danger of becoming attached to a story that may or may not come true.
My past has clearly shown me that there will be surprises — both wanted and unwanted — that I never could have imagined.
Medically reviewed on November 04, 2022
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