April 2018

Friday, January 18, 2013

Why I Write

I am writing my second book, a book of interviews with people who have experienced life-changing health conditions and those in our lives.

(I am also writing several other books as I begin to look for an agent for my first book. As my Auntie Susie might say, “Go-o-o-o-lly! That’s a lot of books.")

The interviews that I’m conducting help me see that I am not alone. My experience is not unique, and others understand my perspective. I am interviewing my peeps.

In the fall, I interviewed a Salvadoran doctor who had experienced Guillain BarrĂ©, an auto immune disease.  In this disease, one’s immune system is triggered by one of many things, such as a virus, immunizations, or bacteria. In this case the immune system makes a mistake and starts to attack the person’s own peripheral nerves.  The illness starts in the toes or fingers, usually the toes, and moves up, including muscles in the chest so you can’t breathe. Because the nerves aren’t working, the muscles don’t work, and if it’s not treated immediately, a person’s lungs can stop working and the person can suffocate. With treatment, a person can recover almost completely. This doctor said that he was 99% cured.

 In our interview, he said, “I suspect, Mary, that though you’re interviewing me, you have gained new avenues of exploration in your own life. A patient can become a victim in the face of adversity. I suppose that this whole process for you is about finding meaning in your own life.

“Like Victor Frankl, a concentration camp survivor and psychiatrist, who wrote Man’s Search for Meaning, we can’t avoid suffering, but we can find or create some meaning to survive it and even thrive.”
I don’t actually think the good doctor’s right here: I’m not looking for meaning in my life. My life has meaning without me looking for it. I’m amazed by that meaning, and I want to celebrate with others.

The doctor’s question of why I write interests me more than his answer. Wednesday, in an interview with a new friend who has experienced chronic fatigue related to Fibro Myalgia, my friend asked, “Why do you write?”
Her question got me to thinking again.

At a writers’ retreat last year, a table of women explored a different question: how do you stay diligent, writing regularly? These women seemed to be distracted from their writing, and writing for them was to some extent a chore that required due diligence. I told them that my struggle is to make sure I live out the other facets of my life: my struggle is, at times, to not write. (This is not a split infinitive, so put away your red pen. Not writing is a verb, an action verb, just as writing is.)
I learned at that lunch that my answer did not make me popular with the crowd, so I have learned to keep this struggle to myself.

Still, writing for me is a kind of release and relief. It comes easily, like water from a tap. I feel compelled to write as I would feel compelled to breathe if I were drowning in water. Writing, for me, is like breathing under water.
Why? I think it’s because I have something to say, though I’m just noticing the recurring theme in my writing: life after disease is not tragic, though many people seem to think it is. I am not heroic because I aim to live a full life with my disabilities and my awareness that another tumor could grow at any time. Some people think I’m inspiring, and I like for people to think I’m inspiring, but the truth is that I’m not exceptional.

For the last year or so, I’ve been interviewing others with life-changing health conditions and those in our lives. I want to publish a book of these interviews, a book that I have wanted to read since my first diagnosis six years ago. I don’t want advice. I want to hear people’s stories, so I am writing a book of stories.
As I interview people with life-changing health conditions, with breast cancer, diabetes, addictions, mental illnesses and so forth, I see that my peeps live meaningful lives.

As my neighbor who has stage IV breast cancer said, “The treatments have been hell, but I’ve found out who my friends are and how much community I have. So there have been gifts. And I’ve found out that I can get through anything.
“It makes me sad when I meet people who can’t see the gifts. I wish I could have gotten here without this, but where I am and who I am are good because of everything I’ve learned from the experience of having cancer.”

Those of us whose lives that have been changed because of our health, live meaningful lives. That’s what I want anyone who’s diagnosed to know. That’s what I want everyone else to know.
Why do I want everyone to know this? Because most of us experience something we didn’t plan for as children, and though our paths change, we can live fully. In fact, perhaps many of us need to veer from the journeys we had planned in order to live fully.

I want everyone to know the hope that I’ve experienced as my life keeps veering from my planned paths. I don’t want people to fear their lives unfolding.
I want my writing to inspire hope. For everyone. Maybe that’s why I write.





1 comment:

  1. tracy.rose@healthline.comJanuary 28, 2013 at 9:03 AM

    Hi Mary,

    Healthline is interested in contributing a guest post to We would be open to contributing any blog that would be of interest to your readers. Healthline bloggers have been featured on a variety of sites including:

    Washington Times:
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    Please let me know if you have any questions. Thank you in advance for your consideration.

    Warm Regards,


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