Living With COPD: Stories Matter, Stories Heal

  • Sometimes if we listen closely enough, life has a way of telling us which path to take. If we can only get ourselves out of the way we just might discover the best direction to take – and that would be in spite of what we think is best, and what we think is the perfect plan.

    Some time ago when I was writing Air Power, a local newsletter for pulmonary patients, I thought it would be a good idea to help readers learn how to effectively manage their pulmonary care by telling them about someone I considered to be the perfect patient. John Z. was the ultimate example of excellent pulmonary management. He followed his doctor’s orders implicitly, took all his medications properly and on time, exercised routinely – did all those right things. I thought it would be a great idea (and, I was certain, be very effective) to profile John in the newsletter, holding him up as an example of how to be healthy by adhering so perfectly all the aspects of lung health management.

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    So, I wrote about John. As a small part of the story, kind of an aside, I added a little background about his growing up as part of a very large family in Iowa, and later, his life in Michigan where he worked for many years as a school bus driver. In my infinite wisdom I thought that surely people would remember first and foremost how faithfully John kept every appointment with this doctor and took his inhalers, using the perfect technique.

    One day I was discussing John’s example with a new COPD patient. Indeed, this man had seen the newsletter, but here and now he had absolutely no idea who or what I was talking about. I was getting kind of frustrated and about to give up on connecting with him on this, when he exclaimed, “Oh! You’re talking about that guy… the bus driver!”

    “Well… yeah… that’s him,” I sighed.  I thought, “Oh, this is just great. I worked so hard on that piece about perfect pulmonary management and all this guy remembers is that John was a bus driver!” Then it dawned on me that we’re really not all that interested in medication schedules or techniques, but first in stories about people and things – things familiar to us, and people just like us.  When we read that people are faced with challenges – even insurmountable odds – we then feel challenge ourselves, we are more likely to identify, and we pay attention. And when the people in stories overcome the odds it is then that we learn, and moreover, find hope.

    So, I learned. When I began writing Inspirations: Stories of Breathing Better and Living Well, the first edition of Breathe Better, Live in Wellness, I set out to do my best to share stories of ordinary people doing extraordinary things. I knew in my heart the book was a good idea. I knew that there were a whole lot of people out there feeling all alone, and having no idea how to manage their lung health. But being a first time author I still had self-doubts.

    I asked a writer fried of mine, “Carla, what if nobody buys my book?”

  • “They will, but even if they don’t, your book has already been a success.”
    “What do you mean?”

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    “The people who’ve told their stories have already benefited by doing just that. She looked right at me and said, “You’ve given them the chance to tell their story.”

    I thought back to all the interviews I’d done, all the words I’d heard and recorded, listened to again a hundred times, and written down. Those words would now bring to the world the experiences, the lives of ordinary people with lung disease living extraordinary lives in spite of it. I remembered how I felt when these amazing people thanked me for letting them tell their stories so they could help others. And in expressing themselves they healed their weary souls and did something very worthwhile.

    Carla was right. Preserving your story will enrich your life, as well as the lives of those who read it. Do you have a story inside you? I’m sure you do! Tell it today; if only to a journal, an audio or video recorder, or perhaps a friend, family member… or yes, even a writer! You’ll feel good about it, and you will help someone else in the process.

    So, you see, my plan… my original plan, probably wasn’t going to do all that much to help pulmonary patients. But once I stopped and listened, to my patients – and my heart – together we learned that stories matter, stories heal.

    The lives of people who live each day with chronic lung disease matter. They so very much matter!  If their stories are not told, their voices not heard, how will anybody know? If the stories are not preserved in some way, they will be gone except, perhaps, for some vague verbal accounts passed along to close friends or family, but lost forever to those beyond the circle, those who need them most.


    Read more from Jane:

    Take Control of Asthma: How One Young Athlete Took Back Her Life and Her Sport, Part I

    Reclaiming Your Life Through Pulmonary Rehab

    Is Your Doctor Meeting Your COPD Needs?

    From Breathe Better, Live in Wellness: Winning Your Battle Over Shortness of Breath.
    By Jane M. Martin

Published On: August 04, 2008