Journey Without a Map

As part of my effort to support authors, especially those who are self-published or published by small, indie presses, I’ll be highlighting some of them in this blog and social media. Many of these writers are friends whose work I admire. I know how much effort goes into writing, publishing, and promoting a book at any time. During the COVID-19 pandemic, promotion is especially difficult with limitations on travel and the loss of venues for book launches, author readings, and literary festivals and conferences.

Today I’m featuring author Nancy Ewert and her new book, Living and Dying Without a Map (Mountain Arbor Press, 2020).

From the moment of a glioblastoma diagnosis for Nancy’s husband, Greg Ewert, and through his days of conscious living and dying, Nancy offers a window into how one family navigated this perilous, heartbreaking, beautiful journey “without a map.” Through the almost daily writings of the family, including Greg, the reader travels with them on their nonlinear trek with all of its deep sorrows, gratitude, unanswerable questions, paradoxes, concerns, and surprises.

I’ve known the Ewert family for over twenty-five years, and I was present with them for some parts of their journey. I was honored to talk (via Zoom) with Nancy recently about writing the book and what it’s been like for her since the book’s publication.

Iris: Congratulations on your new book, Nancy. Even though I shared some of these experiences with you, Greg, and your girls, I was deeply moved both by reading about them again and reading about many other parts of the journey with glioblastoma you hadn’t shared at the time. The CaringBridge [a website for personal health journals for any condition] and personal journal entries read collectively are a vivid reminder of what a roller coaster you and your family were on. Your writing is beautiful, heartbreaking, and heart-opening. Thank you for talking with me about it.

I’m sure you’ve learned more than you ever wanted to know about glioblastoma. For those who aren’t familiar with this kind of cancer, can you give a lay person’s description?

Nancy:  It’s always a malignant tumor in the brain, and only in the brain. Glioblastoma is the origin site, and it stays in the brain. It’s notoriously difficult to treat because of the blood-brain barrier; most chemotherapy can’t get to it. Some glioblastomas are faster and more aggressive than others. Greg had radiation, which slowed the growth for a while. He also had oral therapy. There are cases that doesn’t work, but it did for Greg for a while. The prognosis depends on where the tumor is and how big it is when it’s found. Greg’s first symptoms were word slurring, but for many people, the first sign is a seizure. There are other brain tumors that go through different stages, but glioblastomas are always Stage 4.

Iris: The title is lovely and is a good example of your skill with metaphor.  How and when did you choose it?

Nancy: That is so interesting. I had to choose the title several years ago, and it came to me like that! I never questioned it—until I realized I wasn’t questioning it! It’s important to me to convey that the book, and the journey, are about living and dying. I realized how much living we did during the dying process.  I knew from the early stages that the most important thing for me was that Greg would be at home. I didn’t know how we would do it, and it was scary, and there was no map. I also want to share the possibilities of what you can do, without a map. You can create what you need for yourself; it doesn’t have to be what our society tells you or the doctor tells you.

Iris:  The book’s cover is striking. Tell me about the photo and the design.

Nancy:  This is a photo Greg took in Crediton in Devon, England. In 2008 the whole family went there together. It was kind of a reunion, five years after we were there for Greg’s yearlong teaching Fulbright. We went on a walk, and someone was cutting thatch. I didn’t think of the image at first, even though it’s my favorite photo by Greg; it’s framed and hangs over the bed. Steve Horn, who’s a long-time friend and photographer, suggested it. When he did, I thought, of course! I wanted an image for the cover of a path that leads out to some open space. My daughter, Lilly, helped a great deal with the cover design.

Iris: What was it like for you re-reading all the CaringBridge and journal entries?  Did you include all of them?

Nancy:  It was different for each of them. I went through the CaringBridge posts over a long period of time, starting about a year after Greg died. I’d have to take breaks from the reading; it was hard. And then I’d have to be with it for a while.

 My youngest daughter met poet and writing coach Abe Louise Young at an art exhibit that included Abe’s letter-writing with a friend who had a glioblastoma. For my 65^th birthday, I gave myself a gift to meet with Abe with the question, “Is this worth anything?” She thought it was, and I worked with her a number of times.

 I did a lot of editing to delete repetition in the CaringBridge entries, and Abe was helpful in leaving out things that would have been hard for me to do. That was another emotional level. I would notice myself wanting the ending to be different.

 Iris: What about your personal journals? Had you always planned to include them?

Nancy:  A friend whose husband had had a glioblastoma said, “You were so gracious.” And I thought to myself, “Oh, honey, you have no idea!” That’s when I decided to include some of my personal journal entries.

 I was in Austin for a month visiting my daughter, and I went to a coffee shop every day with my journals. I’d highlight parts I thought should be included in the book. That was another whole experience again, and I discovered I could feel more compassion for myself.  It gave me the experience of wanting to be tender with this person who had been through so much. That was an unanticipated consequence of reading through the journals, which I might not have done if not for the book.

 Part of my passion for the book is I wouldn’t want to give to anyone what I wasn’t able to give myself—nonjudgmental permission. We have these expectations of ourselves of how we’re supposed to be when someone is dying—like in a movie. And it’s just so much more complicated than that. I didn’t want to give anyone the feeling they should be anyone other than who they really are.

 People would say I was brave, courageous, strong, and I wasn’t anything like that. What I got from reading the journals is I was able to express all those feelings. I think my strength came from being able to feel everything and have a place to put all those feelings. I just wanted to take that hurt, frantic, heartbroken, shocked person and hold her in my arms.

Iris: You write in the introduction you kept Greg’s typos and funny misspellings in his CaringBridge posts. Please talk a bit about your decision to add Greg’s CaringBridge entries.

Nancy: (Laughs). It’s so much his story. I don’t think I ever thought of not including his posts because I didn’t think my story was nearly as important as showing the balance of his way and my way. There’s a nuance and complication when you go through something like this with another person. It seemed important to me to reflect that. And also, because he was a great guy!  His writing makes him come alive. It’s like you’re kind of with him! It was a way of paying tribute to him. Correcting his grammar, punctuation, and spelling would have taken so much out of it—the personality. Abe convinced me to leave it, and now I’m so glad I did.

Iris:  You begin each chapter with a quote, mostly poetry. It’s quite a collection, and each one seems as though it was written with you and your family in mind. Were these writings you turned to through this journey?

Nancy:  Yes, both during the journey and writing book. Poetry was very accessible to me and spoke to me in a way I’ve never experienced before. It was often very comforting and affirming of my experience. After Greg died, maybe especially after, there was even more poetry that spoke to me.

 As I was thinking of the design of the book, I copied poems from my collection and physically cut and pasted them to see how they looked on the page. It was a very evocative experience.

Iris:  It’s quite a bibliography. It’s nice that readers can see the list of books and poems at https://livinganddyingwithoutamap.com/continue-the-conversation/.

There are many places in the book where I think you touch on the universality of your experience. Even though your what you went through is unique, much that you write about strikes me as common to many. For example, in the book’s introduction you write:

“For some, it is a phone call and for some, a knock on the door.

For me, it was a single word:  glioblastoma.”

Don’t we all carry fear about something like this happening?

Nancy: Yes, there’s that experience when your life is changed instantly. I can still hear the doctor saying it. I can see her face saying that word. And the floor falls out from under you.

 Iris: The periods of self-doubt and not knowing your identity during Greg’s illness and after he died also seem universal. Have you heard that from readers? Others on a similar journey with glioblastoma?

 Nancy: I’ve shared this with two women whose husbands died from glioblastoma, and they said it could have been their stories. Two other people who lost a child born with significant birth defects have contacted me. That kind of loss is so much more monumental than what I experienced. Both wrote and said how much it reflected their experience. That was an enormous surprise to me. The book allows people to have that same experience that they might not say. To read someone saying, “this is so shitty.” I think that gives people a voice they can’t necessarily express.

Iris: Greg wrote of “gifts upon gifts” being extended to all of you, and you describe “feeling worthy” as a lesson for you. How would you describe some of the other lessons Greg’s illness offered?

Nancy:  Having to dive down to that deep, dark, desperate, terrifying place of the unknown and the sadness of the known has given me a language and an understanding I can never lose.  My heart goes to a place I never knew before, of feeling unity with other humans in the world. There’s a level of love, grief, and sadness that, having dipped into I now recognize as being part of the human race. I feel it’s a gift I can sit with this depth of emotion and not run away from it; I can bear witness to the world in a way that I consider a gift.

Iris:  Reading your book at this particular time, I felt some similarities to the pandemic—uncertainty, gratitude vs worry and grief, amount of energy required to shift perspective. Does that make sense to you?

Nancy:  Oh yes. It’s like the whole world has a brain tumor and now I’ve got friends! It’s like that feeling I’d wake up with knowing there’d been an earthquake. Now I know that everyone’s in that boat. I’ve had some practice.

Iris: Anything I didn’t ask you wish I had?

Nancy: I was surprised by the experience of parenting after a loss. It caught me by surprise that it would be as difficult as it was.  At times I thought it would be easier, like, “Now I can do it my way!” But it was very, very difficult for me. The girls and I grew up together in a way, and all without a map. But, we really did it together. That is a great gift. Being able to trust that I was enough, even though I wasn’t enough, they lost their father! Yet, I had to be who I was and have my own experience while also giving more than just me to them. I wanted to give Greg to them, parent them with his values in mind as well as my own. I never would have anticipated that.

 Iris:  Nancy, thank you so much for talking with me about your process—and for writing this remarkable journey of living and dying.

 If you’re interested in adding the book to your library, there are several options:

• Visit https://livinganddyingwithoutamap.com/buy-the-book/
• Contact the Lopez Bookshop via their website at https://www.lopezbookshop.com. The Bookshop will ship.
• You may buy signed copies directly from the author, Nancy Ewert, at livinganddyingwithoutamap@gmail.com.

For businesses and organizations that want to carry the book, bookstores can contact pod@booklogix.com; organizations such as hospice or counseling centers can email sales@booklogix.com.