Telling the Story of You
We all have stories to tell. Being MSers, some of them are stories of our disease and how we first developed it. This is the kind of story we reserve for new friends, a new love interest, a new doctor. It is part of the getting-to-know-you ritual. If we’ve had MS for a while and told it many times, we stick it in there between the childhood memories, the romantic history, our favorite recipes, over a glass of bourbon, whenever the time seems right. If it is a not-so-distant memory, it can be a horror story that’s best recited at night in front of a campfire. Edgar Allan Poe tales have nothing on the story of you and how you were possessed and terrorized by the seemingly supernatural forces of T-cells gone mad.
Multiple Sclerosis “gaslights” us. In the beginning, we think we’re imagining things. These days, I like to identify the onset of disease as a story of terrorism. People seem to be more engaged by analogies to which they can relate, and it behooves us as storytellers to keep our audiences engaged and on the edge of their seats. I love classic film, so the movie “Gaslight” (1944), with new bride Ingrid Bergman being terrorized by greedy, insane new husband, Charles Boyer, seems to be an apt disease onset analogy.
In the movie, Boyer had married the previous owner who stored her jewels in the attic of a house. He kills her to steal her rubies—but is interrupted before he can discover them in the attic. Years later, he marries her niece, played by Bergman, and they move in to the same house, where he plans to hide small objects that belong to her, making her think she’s losing her mind so he can have her committed and look for the jewels again without risk of detection. He spends evenings in the attic searching for the jewels, and whenever he turns up the gas jets in the attic to search, the lights dim in her room below, adding to her hysteria. She fears that she is losing her memory, losing sense of time, and hallucinating the dimming lights and strange footsteps coming from the attic, convincing her that she is going mad. Her confessions prompt scornful reactions from her husband and skepticism from the household staff. Her husband isolates her, convincing her that she is too nervous and ill to go out in public. Only one man believes she’s sane and Boyer is up to no good, and he solves the crime at the movie’s conclusion.
Memory loss, missing objects, dimmed lighting, strange noises, enduring scorn and skepticism from loved ones and medical professionals—MS can present like a contemporary classic mystery-thriller suitable for a campfire on a dark and chilly night.
What kind of story are you telling now? Is it one of triumph over the haunting? In a recent “Fresh Air” interview on NPR, Terry Gross asked Stephen King, the master of horror thrillers, what kinds of things scare him now that he is older. He said that watching the old ghost story movies of his youth no longer scares him. Now, at the age of 67, the thing he fears most is the loss of his mind through age-related disease. You can recover from a haunting, he said, but there is no recovering from dementia.
As we navigate through the stages of our lives, our stories of MS will be ever-changing and multi-faceted. At first, we most fear the ghosts of Christmases Yet to Come as Scrooge did in Dickens’ A CHRISTMAS CAROL. The future stretches out in front of us like a dark and desolate highway. In the beginning, our disease journey has taken up but a small ribbon of that highway. The initial haunting is still fresh. There is much to fear about the future.
In my own case, 15 years into the disease, the story of me is too long to tell anymore, even to myself. Whenever I find myself reciting it chronologically in my mind, I groan and say out loud: Jesus, Kim, are you really going to start with GENESIS—again? Yadda yadda, we know that in the beginning, Kim recreated the heavens and the earth when her left side went numb and lame. That was eons ago, before Copaxone begat her lipoatrophy and her third flare clinched the end of her marriage. Ancient history, baby. Hows about writing a new chapter now? Audience is gonna get restless, you know.
At age 57, I’m square in the middle of the Second Act, and believe me, it was much easier to write Act One. Stories of hauntings are real people-pleasers; day-to-day coping stories, not so much. A significant part of our audience is able-bodied, so I want to retain those elements that evoke universal fears and empathy. I’ll figure it out. We all do, eventually.
The biggest mystery of all for me is how I'm going to write the Final Act. When I think about that, I remember something a comedian once said in his later years that I want to keep in my head. No stranger to living with a chronic illness, he had suffered with heart disease for the last 30 years of his life. It’s the funniest, best advice I’ve ever heard from a social commentator who was nearing his own final act. I love it because it addresses my biggest fears of becoming boring, tiresome, and irrelevant:
“Die big. Do it to teach and to entertain.” --George Carlin (1937-2008)
How well do people around you understand MS?