I encounter a lot of patient stories from my Heart Sisters blog readers here, as well as from the women who raise a hand during my Heart-Smart Women public presentations. A heart patient’s story can at first kick off with a profound this-can’t-be-happening-to-me sense of disbelief as we try to make sense out of something that makes no sense at all. Telling the story to others helps us do this at first. “How did this happen?” demand our worried family and friends while we lie there, overwhelmed. And thus our storytelling begins. . .
I’ve also learned that the way we tell that same story to ourselves and to others changes over time. And as NPR broadcaster Glynn Washington (host of Snap Judgment) said, when you start changing your story, you change the storyteller:
“If you ask a person on the street what their own story is, they’ll often tell you about something that is rooted in trauma, because they haven’t gotten past it yet.”
Glynn knows about traumatic stories: his parents raised him as part of an apocalyptic religious cult. He recalls a childhood marred by frightening episodes like being locked in a dark closet, terrified and screaming for help. Glynn’s stories were true. They did happen to him.
But he no longer feels the need to keep telling those stories.
What’s wonderful about your own personal narrative, he adds, is that the story is not “locked” forever:
“You can go back, and grab that person’s hand – and you can end that story wherever you want to. You can go back and take yourself, not locked and screaming in the closet, but where you want to be. People can drop their stories, and then pick up another one. It changes the person telling that story. It changes you!
“I can’t emphasize enough how wonderful it is to take back your own story.”
My own “widow maker” heart attack story was pretty dramatic. Stories of surviving a medical misdiagnosis are always dramatic. I still cover its key points at the start of my presentations because it helps to put a human face on a whole pile of surprising facts about women’s heart health that I’m about to unload onto my audiences.
But I rarely even think of that 2008 story anymore during my regular day-to-day life. It turns out that my heart attack was a horrible yet acutely temporary story, yet is no longer my defining persona.
Many of you freshly-diagnosed heart patients reading this might find it impossible to believe that you’ll ever be able to view your cardiac event stories this casually. (These days, the temporary story I’m far more focused on each day involves plantar fasciitis, an excruciatingly painful heel injury– one that, really, nobody is that interested in hearing. But I know that this story too will change. Soon, I hope. . .)
As in most crises, we often need to tell and re-tell dramatic health stories in the early days and weeks immediately afterward. The need to do this lessens over time (although some people continue to repeat their story as if it happened yesterday).
The other reason I’ve been thinking about how we tell stories in general began with a conversation I happened to overhear one day. I overheard four older women (i.e. older than me) telling stories to each other about their respective health problems (sometimes, all at the same time).
They did this for an entire hour. They clearly weren’t listening or responding to each other. Instead, they seemed to be waiting for a break in other stories so they could jump in with their own dramatic updates. What the doctor said, what the other doctor said, what the tests said, here’s a long list of all my symptoms, and your story reminds me of my cousin Helen’s far more interesting story. . .
I know that aging can often bring with it more ailments, more distressing pain, more health issues that provide ample fuel for storytelling. But I don’t want to end up like those women, no longer capable of going out for coffee with my girlfriends without rehashing endless complaints (or, as my Santa Barbara friend Dave calls them, “the organ recital”).
But more importantly, these stories are not helping the storytellers. Social psychologists like Dr. Martin Seligman, for example, believe that complaining can actually worsen physical symptoms by focusing constant attention on them.
As Dr. Barbara Keddy (professor emerita at Dalhousie University and a heart attack survivor herself) warns those of us who need to keep repeating our stories:
“Reliving past injuries of a physical or emotional nature only reactivates the nervous system. Instead, it is more important to recognize our reactions, rather than the specific events related to the trauma.”
As I wrote in Chapter 9 of my book, my own heart attack story is now very different compared to those early days/weeks/months after that 2008 cardiac event.
The story of the sudden acute drama of a misdiagnosed heart attack has been far overshadowed by the relatively quiet reality of just living my life these days – a life that now includes ongoing and debilitating symptoms of a secondary chronic illness: the cardiac diagnosis called coronary microvascular disease (not to mention my – ouch! – sore heel, of course!) I don’t believe that complaining about either to my friends or family helps me feel better.
Changing my story doesn’t of course change what happened back then, but here’s what Chapter 9 says about how telling that story has changed:
“Some days, I feel a wee bit surprised that I’m still alive.
“Very gradually, almost imperceptibly, month by month, I am starting to feel less hypervigilant. I am no longer as afraid as I once was that I’ll die in my sleep tonight. I am no longer convinced that every significant bout of terrifying chest pain means that today is the day I will have another heart attack. (It might be today, but I just can’t be absolutely sure anymore.) I now review those years since 2008 and ask myself: how many hours/days/weeks/months/years did I focus more on fearing what might happen than on what was actually happening?
“I am no longer wary of settling into what some people like to call ‘the New Normal.’ For a long time, I’ve tried to resist using that phrase, mostly because part of me, the crazy-out-of-touch-with-reality part, still wants to embrace the fantasy that I’ll wake up tomorrow and maybe none of this will be true after all. And then my life will indeed be ‘normal’ once again.
“It occurs to me now that this is how my life might actually be from here on in. Based on results so far, it’s highly likely that I may never return to my pre-heart attack self. And I know that it’s taken me a long time to arrive, skidding heel marks and all, at a realization that perhaps has been blindingly obvious all along.
“I can either choose to focus on all that I’ve lost, or I can focus instead on what I still have.”
Just as Glynn Washington has observed, changing my story has changed the storyteller. Like you, I‘m creating – and changing – my own narrative these days as I try to “take back my own story”.
Q: How have you changed your own story?
More about my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press)
The 2018 Heart Study from Canada’s Heart and Stroke Foundation called Ms. Understood is filled with compelling stories of real heart patients, including one I wrote more about from a woman named Nancy Bradley, whose misdiagnosed heart attack was freakishly similar to my own – with one big difference. Since 2008, a number of cardiologists have assured me that my misdiagnosis could never happen now, because we have more accurate diagnostic tools now, and physicians are more aware of women’s cardiac events now – and then I learned Nancy’s story – which happened 10 YEARS after my own heart attack!