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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)

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • RachelB
    5 years ago

    Looking forward to your next one, Kim. What you shared here is so dead on. I’ve never seen “Gaslight,” but I’ve heard quite a bit about it. Reason being I lived for almost 40 years with a narcissistic personality whose forte was gaslighting, and when the relationship abruptly ended, I sought answers and support in an online community of narcissistic relationship survivors. Their stories were eerily like mine, and it helped tremendously to just be able to identify some of what had been going on in a neutral light.

    But I never once thought to equate MS with gaslighting. And that is exactly what it was in the beginning. Right on, right on! The way you described it was exactly my experience. My primary care physician ran standard, fairly routine tests and dismissed my sudden-onset blindness as psychological. Suggesting that this “old gal” just had one to many irons in the fire, he instructed me to scale back my daily activities and come see him in six months.

    After I got in his face and shouted something about sexism and mal-practice, he sent me to a cardiologist, and the medical merry-go-round began, with each new battery of tests revealing nothing abnormal. My (now-ex) husband believed that I was someone manufacturing my signs and symptoms through some form of hysteria and washed his hands of helping me.

    No one believed me but my daughter. If it hadn’t been for her, I probably would have taken my own life.

    No one apologized, either, when I DID finally receive a DX of RRMS. My fears and complaints had gone on for so long that everyone was just tired of it and glad I’d finally gotten an answer. That I was having tremendous difficulty physically and emotionally just got overlooked or swept under the rug.

    Now that I am footloose and fancy free (the ex just walked one day without saying he was even leaving, much less why), I have the freedom to accept my limitations, but I’m having a hard time doing that. Not because I’m in denial or because I’m just hard-headed and refuse to give up. Because I lived for so many years in an abusive environment that told me I could not be different. I could not be special. I could not be sick. I guess in a way I’m gaslighting myself these days.

    Yes, you’re right. I don’t trot out the opening chapters unless someone new to the disease is sharing their frustrations and their fears. And then the old monster rears its ugly head. It’s been over 25 years (in hindsight) since my first MS exacerbation. It’s been probably five years since I moved into the SPMS form of the disease. My life is just an echo of its former scope, and yet I’m still berating myself for not being able to hold my bladder or keep up with my friends or have a day of totally unclouded cognition.

    Despite my own self-sabotage, life is so much better now than it was with a doubting, controlling, unsympathetic husband. I’m working on being kinder to myself. It’s stories like yours that affirm my worth and the belief that it’s still worth it. AT the ripe old age of 60, I’m taking courses to complete a degree I had abandoned hope of ever getting. I have a sister who has been such a blessing and a source of moral support. My daughter still loves and believes in me, and my sons are there when I need them.

    TMI. Rant over.

    Thanks again so very much for sharing your deadly accurate accounting with such humor and grace! I’ll be watching for more of your insights on this website.

  • poppydarling
    5 years ago

    Kim, I just love your style. We’re similar ages, with a similar diagnosis year and a very similar way of looking at Our Situation (I adore old movies — I have Gaslight recorded on the DVR right now. Keep wanting to watch, but it does freak me out). I’m still working on my Chronical podcast, because I believe more and more every day that we deserve to tell our stories whether or not they “entertain,” which in my opinion is just another way of saying they need to meet with others’ approval. There will be enough people like you, and me, to listen with compassion and understanding to make the telling worthwhile.

  • Grammy
    5 years ago

    Although you had me at the beginning and even made me want to watch that classical film (had I not been told the ending…FYI) I found myself getting that sick to my gut feeling of loneliness and despair. You see I’m in that elusive 10% stuck with PPMS (primary progressive multiple sclerosis). My story starts out like watching a horror movie 1/2 way in where they’re hopeless and you realize only one character is coming out alive. And it won’t be my character.
    My MS story had me DX and going from walking, to a cane, to a walker, to a wheelchair and now to a bedridden- unable to shower myself or go anywhere (maybe once a month I go to my doctors appointment and will go to lunch or a movie if I’m not too much pain). My life IS A HORROR STORY.
    In a year I had progressed from a 5 to an 8.5 on the Expanded Disability Status Scale.
    I couldn’t dance or enjoy my daughters wedding. And my dream of being a grammy that can do stuff with my grandchildren has been dashed and robbed like a theif in the night.
    I became a grammy 5 months ago and can hardly hold my precious granddaughter by myself. It’s a constant reminder of what could have been. What SHOULD have been.
    We had our daughter young so we could travel later in life and enjoy our grandchildren and be the hip parents. Now at age 41 – I’m stuck in this body. Held hostage to all my dreams of the future and regrets of the past. (Why didn’t we take more walks? Why didn’t we take more holidays? Why didn’t we go dancing? Etc..) It’s just over!
    PPMS has stolen my future and trapped me in a body prison cell.
    No one talks about the 10% of us who don’t have drugs to hold off progression of MS.
    Most of you can still have normal lives with a few interruptions. But it goes back to normal. Well I wish to God I had been DX with RMS, RRMS…but I wasn’t that fortunate. So I’m hoping that people living with these common forms of MS realize how blessed you still are. Focus on the good things you still have and still have ahead.
    Thank God your not trapped LIVING IN A HORROR STORY staring yourself …except your not the one that makes it out alive in the end….

  • DarleenM
    5 years ago

    Kim,
    I appreciate your analogies equating your life and experiences with film and comedy. It is easy to get caught up in the quagmire of a chronic illness and not so helpful to dwell on the details to the point of redundancy. Your story will help us all remember to life to the fullest now and build our own interesting life stories.

    One other comment: The phrase, “MSers” grates on me. I would prefer, “people living with MS” or something like that. I know it is longer but I don’t like to be referred to as a disease.

    Anyway, thank you for sharing your story. I’ll look forward to reading more!

  • Grammy
    5 years ago

    I agree. Being called Ms’ers is a pet peeve.

  • Laura Kolaczkowski
    5 years ago

    I do so wish you would write more often because when you do your brilliance with words and shaping images shines through. The Genesis of Kim’s story still deserves to be immortalized somewhere and somehow if you are done tell it around the campfire.

  • Kim Dolce moderator author
    5 years ago

    Laura, thanks for the kind words. The word “immortalize” makes me think of bronzed baby shoes, which gives me the creeps, lol. I recently read an article about what happens to our internet stuff after we die–which is pretty much nothing, it’ll hang out there until the next apocalypse wipes clean the digital clouds that have been seeded with our images and words.Until then, I guess every MSer’s story is out there to be discovered by generations to come.Not sure how I feel about that, but it’s out of my hands.

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