Friday, September 13, 2019

Q&A with Dawn Newton


Dawn Newton is the author of the new book Winded: A Memoir in Four Stages, which focuses on her life with cancer. She lives in East Lansing, Michigan.
 
Q: Why did you decide to write this memoir?


A: After my initial cancer diagnosis, I took a semester away from a relatively new adjunct teaching gig so that I could adjust to the new targeted therapy pill I took each morning. I also began writing in a journal each morning to make sense of things.

At some point, I recalled this powerful image from an old Natalie Wood and Christopher Walken movie called Brainstorm. The scene depicts one of the scientific researchers who is developing a futuristic mind device, an older woman who is both a workaholic and a heavy smoker. She experiences the first twinges of a heart attack while at work one day. No one else is present, so she’s in a situation of real peril, yet her isolation means there’s no “dialogue” to clue the audience in.

As the movie viewer watches her actions and reactions, it becomes apparent what her thinking is – if she is going to die, she’s going to at least record the experience on this mind device she’s been working on with her colleagues so that they can learn something from her experience. She connects herself up to the machine so that it can record what’s going on in her body while she’s dying.

That image informed my journaling: If I was going to die, I needed to start recording it. These details were important, and they might be helpful to my family members or someone else.

I think as time went on, I began to feel more strongly about the full range of complexities of the situation I was in. Certainly, for my family’s sake, I was happy that I’d lived longer than expected. And on most days, I was happy for myself as well. Yet the realities were tricky.

I left my job as an adjunct instructor teaching outside of my own community, thinking I wouldn’t be around much longer and needed to spend my remaining time with my youngest child, who was still in middle school when I was originally diagnosed. Seemingly, there was no loss when I left that job because I didn’t have health insurance or retirement; in addition, my car was ending its long, dedicated life, and we didn’t have the money to purchase a “reliable” replacement for my commute.

My cancer drug was expensive, but it was mostly covered by my husband’s insurance, and we eventually found a pattern of paying for the scans and MRIs and bone injections that occurred early each calendar year, before we exceeded our deductible and had paid claims.

Yet as I lived longer, my major conundrum had to do with how hard I should try to find another job, since I was still terminal and fatigued most of the time. I kept coming back to the issue – how do people make decisions about money when they’re in this situation? 

If you have debt, which we did, from my underemployed years, you can be devastated by the costs of cancer. But if you are unemployed or underemployed, you wonder how to conduct yourself in the job market. Do you try to hide your cancer?  Will you be able to successfully hide your cancer, assuming you’re willing to try? If you’re conscientious, you worry about the whether you’ll be a good enough employee.

The new targeted therapy drugs give people “more time” as they say on the commercials, but that time is freighted with challenges. Making the insurance work. Figuring out the drug deliveries. Arguing with the drug companies about deliveries even if you have insurance. If you don’t have insurance, finding people who can help you navigate the programs out there.

I was relatively aware of health insurance limitations when I began my cancer journey, but my education has been intense since then. I wanted to capture some of that in a book.

Q: In the book, you note the importance of your husband's health insurance plan, and you write, "How many cancer patients can ignore the economic realities of their treatment?" What do you see happening in this country regarding health care policy and patients' ability to get the care they need?

A: Like many other issues facing Americans, I think health care policy has been politicized. I grew up in a working-class family, and since my father worked at General Motors, he belonged to a union. That meant we had good health coverage, and even though my parents incurred a lot of expenses because of my chronic asthma and allergies, we never had to go without care, although there were times when we carried significant balances at doctors’ offices and hospitals as well.

It was only as an adult that I understood why the medical expenses of my childhood were largely covered. Because my dad had good benefits.

But the cost of insurance has now become exorbitant; many people are either uninsured or paying dearly for their coverage. And the debate over pre-existing conditions is frightening. I note in my book that despite being employed for most of my life, I did not always have health insurance with my employers.

At the moment when my cancer was diagnosed, I did not have health insurance through my own employment, even though I was working quite hard at the time. That is often the way part-time and adjunct employment works. I know and have heard of many cancer sufferers who also didn’t have insurance at the time of their diagnosis, nor did they have a partner or spouse who could provide that coverage. Their bills are staggering.

I am currently following the blog of a woman with stage IV lung cancer whose husband just lost his job. She is on short-term disability from her employer. Who is paying the cancer care expenses?

For me, the question of health care coverage starts to get at the issue of value. Do we only have value as contributing members of society if we happen to have insurance at the moment our critical illness is diagnosed? And do we only have value if we have worked at a specific kind of job that has provided us with those benefits?

A related issue involves the cost of drugs, specifically targeted therapy, which allows people with metastatic cancer to “live longer.” My daily oral pill, the last time I checked, retailed at over $7,000 a month.

I don’t have any easy answers, but I encourage people to do their own research. I am trying particularly hard these days to educate myself on health care matters.

One of the articles I’ve learned from was published in The New York Times on Sept. 18, 2017: “The Best Health Care System in the World: Which One Would You Pick?” by Aaron Carroll and Austin Frakt. The article takes the form of a “tournament” pitting various countries against one another, with a panel of “experts” assessing them and making decisions about winners of each round before the semi-final and final rounds.

Each time I read it, I learned something new and thought of a new question to ask. The political leanings of the “experts” – conservative versus progressive – are noted in the article, and so I felt like I wasn’t just getting one angle on the subject. I think we all need to know “What works for me now?” as well as “what will work if my situation changes?” 

Finally, I think we can start with ourselves and our families, but then we need to branch out, show our empathy, and figure out what will work for people who may not share our circumstances. Perhaps we also need to ask ourselves, “Do I believe that paid health care is a fundamental right?” We know that the Second Amendment grants us the right to bear arms. Does the Constitution provide Americans with the right to paid health care? Should it?

Q: How was the novel's title chosen, and what does it signify for you?

A: I considered several titles while I was writing the book, but as I was nearing the end of a second draft, I went to brunch with my family when my children were all home for a vacation. We brainstormed a variety of titles, which I wrote down for later reference.

Eventually, the title Winded emerged from that list, and it seemed appropriate given that the initial manifestation of my cancer occurred during Superstorm Sandy’s presence being felt in the Midwest. The book begins as I am dealing with my earliest symptom and Sandy’s windy bluster, all during my husband’s absence.

In addition, since I had suffered from asthma as a child and the cancer settled into my lungs, I wanted to the focus to be on breathing and that casual way people use to describe losing their breath: “I’m a bit winded today.”

Finally, I think the title Winded captures a lot of what I felt metaphorically as I dealt with the recognition, when entering my 50s, that life was NOT, in fact, going to deliver the promising version of success and happiness that I might have indulgently entertained in my 20s or my 30s.

One can work hard in America and not get anywhere. I’m one of those people who pretty much believes now that the American Dream is a myth. The Great Recession put a huge seal on that realization for me, and I felt that for the foreseeable future, at least, I’d be catching my breath, arguably not able to take in a satisfying quantity of air to sustain me.

Q: What do you hope readers take away from the book?

A: I think I feel even more strongly than I have in the past that people have the right to shape and articulate their own narratives. I am astounded sometimes by how often we allow others to speak for us. As a natural introvert, I experienced so many moments in the early years of my diagnosis where I wanted to say, “Listen to me!” or “You don’t understand!”

During my cancer journey, I’ve wanted desperately to articulate every thought in my head in relation to what I’ve undergone, and yet I struggled to believe that I deserved an audience for anything that I wanted to utter.

Certainly, much of that is my fault, related to my temperament as an introvert and my tendency toward depression. But the world – society or leadership or whatever collective noun you want to use – talks fast, talks loud, interrupts constantly and has a hard time engaging in any sort of sustained conversation.

I am hoping readers can take away the idea that we all need to listen more and empathize. Make fewer assumptions about what people need or how they feel but just ask to hear a story and then sit still and listen and try to imagine what it is like to be the person telling the story.

And for those people who never speak, I want to exhort them to find the courage to open their mouths and begin the tale. It is so hard to call attention to yourself if it is not your way. But someone might need to hear the way you’ve shaped your life’s meaning.

If we can all find the balance between listening and hearing and speaking and claiming our own narratives, we’ll all be stronger for our efforts. That’s the gentle message I hope people get from my book.

The harsher message is much more direct: life is not fair. You do yourself and other people around you a huge disservice if you believe that because you’ve worked hard, you will automatically have good things happen to you. Most decent people deserve good things in their lives, but that doesn’t mean they’ll get them. Life is capricious.

We should all strive to be good, loving, humane individuals, but when a person is experiencing hardship or poor health, hearing others claim that their good fortune is solely the result of their hard work or the blessings of a benevolent god brings very little comfort and even some pain.
 
Q: What are you working on now?

A: I originally studied the writing of fiction, and not surprisingly, I’ve wanted for much of my life to write the great American novel. I’m reviewing two partial manuscripts for which I’ve had a great fondness in the past to see if something can be made of either one of them.

The other thing I’m working on is an essay about the stereotactic body radiation I underwent in February of 2018, just after my mother-in-law died. It was an unusual experience, and a costly one as well. I want to document what I remember of it, as well as capture the diagnosis and procedure codes for the experience.

Q: Anything else we should know?

A: As a person who has struggled with depression for much of her life, and now cancer, I do find the act of writing about one’s trauma to be very therapeutic. It’s not for everyone, of course, so I’m not dogmatic or insistent that people need to document their pain.

But I have a huge fondness for writing prompts, and I have been trying this spring and summer to gather some of my favorite prompts – the one’s without copyright issues, because I’ve learned so much from other writers’ prompts – in a program I’ve called “Writing through Sadness and Joy.”

There is no “end goal” to each exercise. But sometimes people respond well to a random idea that someone hands to them on a plate. Like a page from a coloring book: “Here. Color this.” I’m just starting to put them up on my blog and I’m shooting for a weekly prompt post. We’ll see. You can find them at dawnmarienewton.com.

Thanks so much for your time, Deborah, and the opportunity to talk about my work.

--Interview with Deborah Kalb

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