I keep learning things from MS. My friends tell me they learn too, just in other ways.
That’s one thing I am learning. MS is has been like a graduate course in how to learn from my friends.
Two people, in particular, show me how to create the MS narrative in my life.
One is a toddler who is learning how to 'read' even though she doesn't know her letters.
To me, having MS is like having a life story but not knowing where the words are pointing—it is too unpredictable and too unique to ‘read’ to the end. It is like reading my life story without the words to point the way.
This reminds me of Hero Number One. She is the star in one of my favorite family videos.
In this 15-second film, she reads out loud to her mother. As she tells the story she flips through the book. She turns the pages forward, then goes backwards, then stops, closes the book, opens it again—and not once does she stop the narrative of her story. “She Can Read Without Looking At the Words,” we declared to each other! We all chuckle and delight in this.
She accomplishes the miracle of ‘reading’ easily. She grins and tells her story till she is through and then she puts the book down.
I think about life as our stories. We have heard the term script used to refer to expectations of our lives.
My script did not include MS. Does anybody imagine all of the important things in their lives that came to them? I did not imagine MS. I don’t know how that story goes, either.
I don’t know where MS till take me physically. None of us knows where MS will lead our bodies.
This brings me to Hero Number Two.
He is one of my best friends, a brilliant man, and he died this past summer of early onset alzheimer’s. Brilliance opened many doors in his life, and he left through that same doorway, even with alzheimer’s.
Though he knew alzheimer’s was going to take control of his body, he took control of his story line.
This is what he did. When he got the diagnosis, after he took time to adjust to internally, he took practical steps. He shared the story with people who needed to know. He prepared the steps leading to the end—he asked significant people to be in charge of overseeing his caretaking and he planned the finances involved.
He did all of that practical work because, even as one part of his life was exiting, he chose to have his own way of telling his story.
These two friends teach me how to ‘do’ my story with MS.
From the toddler I learn to grin and wing it when I don’t know the next part of the story. I figure that’s what we all end up doing. We tell our stories, we live our life, without looking at the words, we improvise!
From my brilliant friend I learn that we don’t need to have control of the end of the story to choose the way we live now. How my friend planned the last part of his story inspires me.
Everyone I know, each of my friends, ‘does’ your own version of your life. The way you tell your story, the choices you make, these things open me to possibilities that I can’t know on my own.
Your life shows me how to live the new pages that come in my story. You do that for everyone who knows you.
That’s what heroes do.