Oscillating narrative: the learned art of re-creating ourselves

17 Dec

by Carolyn Thomas    @HeartSisters

“We all re-create ourselves; it’s just that some of us use more imagination than others.”  ~ Madonna

Whether we want to or not, we often end up re-creating ourselves after a significant medical diagnosis. Researcher Dr. Kathy Charmaz calls this phenomenon the loss of self after such a diagnosis, a loss experienced while we’re learning to adapt and adjust to this strange new life as a patient. When we try to talk about this painful loss to others who haven’t ever experienced it, most have trouble taking us seriously, or they may want to jolly us out of our current reality.

Yet how we talk about this matters to how we get through it.

Coping with loss or adversity in the past, and more importantly, what we learned growing up about how our own families coped can influence how we approach crisis and setbacks now. Behaviour scientists, like Dr. Sonja Lyubomirsky at the University of California Riverside, for example, assure us:

Life’s turning points do not have to become major crises after all. In fact, our research has found that life events do not have much of an impact on optimism or happiness.

“And as crazy as this might seem, I recognize one true thing: the older we get (except maybe for extreme old age), the better the chances of being able to handle any given catastrophe, entirely due to all those years of experience in successfully handling all kinds of difficult problems, big and small.”(1)

And as I wrote in my book (A Woman’s Guide to Living with Heart Disease, Johns Hopkins University Press, November 2017):

 “In my experience with heart disease, I learned to cope with crisis by coping. I learned to adapt to crisis by adapting. I learned to roll with the punches because, like so many of us, I’ve practiced rolling with so many figurative punches during my life.

“It’s not because I needed the crisis to become a better person, not because the diagnosis itself was some kind of a gift, and certainly not because I needed to add meaning to a meaningless existence, but because human beings have a remarkable ability to get used to almost anything in life (both positive and negative).”

Drs. Marshall Duke and Robyn Fivush at Emory University suggest that rolling with the punches may be a learned skill from childhood, informed in part by listening to how our families talk about their own history of rolling with those punches. They summarize three general forms of family story-telling(1):

  • Ascending family narrative (things always got better for us)
  • Descending family narrative (things always got worse for us)
  • Oscillating family narrative (We’ve been up. We’ve been down. We’ve had terrible, painful times but we got through them. We’ve also enjoyed the best of times, but when they didn’t last, we survived no matter what).

Dr. Duke adds:

“In our study of family stories at the Emory University Family Narratives Project funded by the Sloan Foundation, we found that family stories seem to be transferred by mothers and grandmothers more often than not, and that the information is typically passed during family dinners, holidays and celebrations.

“Other studies have indicated that these very same regular family experiences can contribute to the development of a sense of what we have called the intergenerational self.

“And it is this intergenerational self and the personal strength and moral guidance that seem to derive from it that are associated with increased resilience, better adjustment, and improved chances of good clinical and educational outcomes.”

Family stories about past adversity can affect a child’s interpretation of what painful setbacks, disappointments or crises mean. Are they unfair tragedies that should never have happened to us, or are they part of life?  Each health crisis essentially becomes part of the oscillating family narrative of the future, and the family stories about how we adapted – or not! – can actually influence other family members.

In other words, how do we want to be remembered by generations of our friends and family?

As my grandbaby Everly Rose grows up, for example, she’ll know that her grandmother had a heart attack in her 50s. Will that storyline in her own family narrative – and especially how her grandmother coped during subsequent years – passed down during years of family dinners, affect what she believes chronic illness is? And when she suffers her own crises or setbacks or personal losses one day as she grows (as we all must), will the family stories she hears about her family today affect her beliefs about her own capacity for resilience?

When we believe that no matter what happens in our family, we are able to handle even the hardest times, it can help us move beyond the initial panic and fear that often feels like it will last forever.  It’s also why I like to write about what’s known as the situational depression that’s so often experienced – yet often ignored – by freshly-diagnosed heart patients. If only hospital staff would reassure us before discharge that this kind of depression is common, temporary and almost always treatable, imagine how it could improve our belief that we can and will get through this.

A New York Times article by Bruce Feiler summarized the benefits of an oscillating narrative that stresses resilience:

“The bottom line: create, refine and retell the story of your family’s positive moments and your ability to bounce back from the difficult ones.”

1. S. Lyubomirsky, “The Science of Happiness,” lecture at Pepperdine University, Seaver College, W. David Baird Distinguished Lecture Series, Malibu, California, September 25, 2014.
2. Duke, M.P., Lazarus, A., & Fivush, R.  Knowledge of family history as a clinically useful index of psychological well-being and prognosis: A brief report. Psychotherapy Theory, Research, Practice, Training, 45, 268-272. 2008.

Q: What have you learned about resilience from your own family’s discussions about how they have coped with past adversity?

NOTE FROM CAROLYN:   I wrote more about the loss of self and resilience in my new book, “A Woman’s Guide to Living with Heart Disease”  (Johns Hopkins University, November 2017).

See also:

8 Responses to “Oscillating narrative: the learned art of re-creating ourselves”

  1. Karen Alexander January 4, 2018 at 6:23 pm #

    I have continually challenged myself to use my heart problems as an opportunity to develop more grit and perseverance.

    My new thinking is that I would like to transition form my current profession as a speech language pathologist to become a physician assistant. I would like to be one of the seemingly rare primary care providers who truly understands what it is like to have a chronic illness. My other intention would be to show my patients that I actually value them as a partner in their care. My most frustrating patient experiences have been when I have felt dismissed, ignored, and talked over. Not only has this lead to medical errors in my care, but has lead to immense amounts of frustration personally.

    Anyhow, I am planning on turning my lemons into lemonade. Just so far, I feel like my care as a speech language pathologist has improved since my diagnosis with heart disease and a genetic illness.

    Karen

    Liked by 1 person

    • Carolyn Thomas January 4, 2018 at 7:40 pm #

      Karen, you are my favourite kind of health care professional: one who has been diagnosed with a chronic illness. It’s not that I would ever wish heart disease or any other chronic condition on anybody, but it just seems that those who live with such a diagnosis can’t help but become better and more compassionate health care professionals. They suddenly get it“…

      Like

  2. Meghan December 18, 2017 at 6:05 am #

    Over the years I have told stories and heard stories about all kinds of family situations, health issues, etc. I wanted to suggest that we be VERY careful when relating incidents or situations that have happened to us such as abuse or even (for patients) bad experiences with healthcare providers. And I wanted to stress the importance of FORGIVENESS.

    My mother-in-law is in her 70s now and it seems to me that her experiences growing up in a highly abusive environment are closer to her memory now than ever, and she talks about this more than she ever has before. She might tell you she has forgiven, but I don’t think she has — she is an angry and bitter person.

    By the same token, in my cardiac support group, I hear the same stories over and over again from patients who have suffered much from mistakes made by doctors. The fact that they are still rehashing the same events with anger in their voices tells me that they have not forgiven and really need to let it go. When a person almost dies and/or suffers permanent damage to their heart because of some doctor’s mistake, they have a right to be angry — but I think they also need to let it go if they want to stay healthy.

    Unforgiveness only hurts the person who hasn’t forgiven. It changes nothing about the situation that was wrong or the person who wronged. To forgive literally means just letting it drop and moving on. It does not validate what was done or excuse anyone’s hurtful actions. It is amazingly freeing.

    When I sat with my dad in 1996 when he was dying, I said to him out loud that I forgave him for anything he may have done or not done as my father that wasn’t good. My dad was basically a good father, gentle and easygoing, never got angry, and I loved him and know he loved me, but he worked 7 days a week all the time I was growing up so he kind of wasn’t there very much for me, and that negatively affected me. Choosing to forgive him for his shortcomings was very powerful for both of us. I think it released him from guilt and I have never felt a resentment against him ever since.

    As heart disease patients, we more than anyone should know the power of forgiveness and how it will only help our hearts to be more healthy. We know that anger and bitterness can be strong factors contributing to heart disease. Rehashing the offenses that cause us to still feel anger only stirs up those emotions and feeds resentments. I strongly encourage us all to take time this holiday season to consciously forgive those who have wronged us in any way. Speak forgiveness out loud, maybe to that person directly or even just into the air to yourself. I am convinced that it will do your heart more good than anything!

    Liked by 1 person

    • Carolyn Thomas December 18, 2017 at 6:30 am #

      Brilliant examples of how a family will forever remember the person who, like your mother-in-law, cannot get past what happened to her. As I was reading your comment, I asked myself: “Is this how I would want to be remembered by my family members and friends?” As (professor emerita, author and heart attack survivor herself) Dr. Barbara Keddy likes to say: “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.”

      She once wrote, for example, about a support group in Toronto whose rule was: no talking about their medical condition – only about ‘wellness’. Not many support groups out there have this rule, as you have observed in your own cardiac group. Thanks so much for sharing this message of forgiveness, Meghan…

      Like

  3. Pilgrim125 December 17, 2017 at 12:35 pm #

    Wow! Your blog makes me wonder what family narrative I’ve been passing along. As someone with a terrible, but different, diagnosis, I will need to be aware of this part of my legacy. Thanks for the heads up!

    Liked by 1 person

    • Carolyn Thomas December 17, 2017 at 9:29 pm #

      That’s what I was wondering too, Barb. And it’s not about pasting on a happy face no matter what, but as you yourself once wrote “I’m just doing the next thing on the path, trying to live. Awesomeness not required.”

      Like

  4. Chris Weigand December 17, 2017 at 10:55 am #

    I already had a type 2 diabetes diagnosis from 20 years ago and I learned how to do insulin and the finger sticks with it. I had no complications from it yet, until my serious STEMI heart attack this year. So I could fool myself into thinking it was under control.

    After reading your book, it finally dawned on me that both issues were from 2 progressive diseases that were going to rear their ugly head from time to time.

    It was a defining moment for me… I kept pressing the docs for a reason for my heart attack with no high cholesterol, high blood pressure, or blockages and my A1c were almost normal. They were puzzled when I asked. You are, after all, a diabetic and that is reason enough to them.

    OK, I still don’t think of myself as sickly because I have only minimal damage to my heart. But I am still shell shocked and nervous that something else will happen any day now. It robbed me of any confidence that if I did everything right, I would be OK.

    My GP listens to me but heart docs only look at the numbers and dismiss me in favor of other more serious patients. Thanks for your articles that help me because I don’t feel that my friends or family want to hear anymore from me right now….

    Liked by 1 person

    • Carolyn Thomas December 17, 2017 at 6:45 pm #

      Hello Chris and thanks for your comment. You made so many good points that will likely feel familiar to many others, especially when you say things like “It robbed me of any confidence that if I did everything right, I would be OK”. Most of us live our whole lives (until a serious diagnosis) believing that, and taking most things in life for granted, so now we have to somehow get our brains wrapped around a different and scary reality.

      I think “shell shocked and nervous” is such an accurate description (waiting for that other shoe to drop) for those living with chronic illness(es). As I wrote in my book, I remember the day that it seemed to dawn on me that, despite months of expecting to die overnight, I seemed to be still alive. I hadn’t died yet! All that fretting for nothing!! That’s an exhausting way to live.

      I also wanted to mention your last sentence about your friends and family: every person is different, but I’ve often wondered if it has far less to do with a lack of compassion and far more to do with the fact that those who care about us want and need us to feel “better” because if we tell them we feel “worse” it makes them feel terribly helpless. It does mean we have to choose carefully who we talk to about our own health woes, and how much. I’m glad you have a GP who’s a good listener! Best of luck and Happy Christmas to you…

      Like

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