By Leslie Lindsay
What happens when your only child dies of a tragic genetic disease and you’re left to grapple with the meaning of life?
~WRITERS INTERVIEWING WRITERS | ALWAYS WITH A BOOK~
Memoir Monday: Mental Health Awareness Month
What happens when your only child dies of a tragic genetic disease and you’re left to grapple with the meaning of life?
This is the overarching question that plaques novelist Maryanne O’Hara as she makes sense of the senseless loss of her adult daughter, Caitlin, following a near-lifelong battle of cystic fibrosis (CF) in her forthcoming memoir, LITTLE MATCHES (HarperOne, April 20 2021).
Immediately, I was enthralled with the deep well of questions this wise writer posits to the reader:
Where is she?
Is there more to life than this life?
Does consciousness survive death?
Does my existence have any purpose?
Of course, death is the only certainty in life and while that’s ironic (and a bit glib), there is so much life that happens in that interstitial space. This is why I think I love LITTLE MATCHES.
Maryanne and her husband, Nick, lose their only child–Caitlin–when she is 33 years old. For thirty-one of those years, they cared for a daughter who was diagnosed with CF. They were told she would live a long life or die in a matter of months. LITTLE MATCHES is at once a medical memoir about CF, but also it’s a mother-daughter memoir about life and love. But there’s more here, too, breathing in the spaces of context are so many metaphysical, existential questions and quandaries, symbolism, coincidences, more.
I found LITTLE MATCHES to be wholly inviting, authentic, raw, and told with an intimate candor. O’Hara is a wise and powerful storyteller, a strong mother, and so much more. This is a tough read, with a heartbreakingly expected mid-point yet a profound and meaningful outcome.
Cobbled together in bits and pieces of blog entries, Caitlin’s journals, lists, drawings, song titles, more, LITTLE MATCHES is a slightly meandering narrative (which flows wonderfully with this concept of grief), in which O’Hara consults medical research and mediums so that she may better understand the complexity of her role in her daughter’s life, her death, and to make meaning of her purpose. In the end, O’Hara becomes an end-of-life death doula so that she may better help others as they let go of this earth, but also to assist those who are left in their wake.
Please join me in welcoming the lovely and talented Maryanne O’Hara to the author interview series:
Maryanne, welcome! I am so blown away with the breadth and scope of LITTLE MATCHES. It’s not just a memoir, but almost like two-books-in-one, as we learn both sides of the story: yours and Caitlin’s. It’s clear this was a joint-project, though it wasn’t quite intended to be. Can you talk a little about your inspirations?
Yes, but first, thank you so much for having me. I love that you recognized the intricate weaving of layers went into the writing of the book. I worked hard at that; thank you. As for inspirations, it actually did start as a bit of a joint project. The back story is that while we waited for Caitlin’s transplant, I kept a blog to keep family and friends abreast of news. After her passing, writing on the blog became much more personal. It was the only kind of writing that mattered, and the only kind I wanted to do. The posts were a way to grieve out loud, in a way that felt connected to Caitlin. I shared her writings, and ruminated on the eternal human questions of living and dying, and thus, the blog became the inspiration for the book. Or more specifically, the people who responded to the blog posts and urged me to write more, inspired the book. I honestly felt, during the writing of the first draft, that Caitlin and I were doing it together.
Like you, I also have written a memoir (unpublished) about my mother—her mental illness, our estrangement, and her eventual suicide. There’s a good deal of overlap with your work because I also had events and symbols present themselves, there’s the medical (psychiatric) connection, and more. One thing I heard a lot when I was writing was how cathartic it must have been. It was…and wasn’t; it was something I felt compelled to do. Still, there’s something about writing and reading that makes for a transformation, a healing, if you will. Can you can expand on that?
Oh, I am so sorry for all that you experienced with your mother. And I hear you. I definitely didn’t write the book to make myself feel better. I didn’t expect that anything could. But it felt urgent, even necessary to write it for Caitlin, to honor her and establish her legacy, and also to do it for those strangers who had reached out to say they needed more of the kinds of stories that provided them coping insight into their own issues. As a lifelong writer, I was aware that my book needed to have a narrative arc, a point, and that point became “here’s what I discovered on my quest for answers to the big life questions.” I realized, at the end of my journey, that I had made some transformational discoveries, and that they were indeed healing. And now that the book is finished, with its absolutely beautiful light-reflecting cover, and the gorgeous endpapers featuring images of Caitlin and objects that belonged to her, I feel a lot of relief: “I created this beautiful tribute to my daughter. It can exist forever.” It’s wonderful.
I was struck, too, by your experience with hawks. I didn’t know this before reading LITTLE MATCHES, that they represent all things ‘death,’ which makes sense, seeing how they are scavengers. Shortly after my mother died, I saw little things like this, too. A giant hawk on a walk, wings outstretched on a residential roof. Then it swooped right down in front of me. Just yesterday—on the way home from a road trip to visit the widow of my father-in-law, I saw hawks everywhere. And then I read what was in LITTLE MATCHES. So this begs the question: coincidences, synchronicities. Are they the same? Is this communication from those who passed? Is there really life after death?
Synchronicities that I originally dismissed as “just coincidences” began to pile up to the point that I realized that discounting them was myopic. Also, when I shared my stories of “odd occurrences,” the most unlikely people would tell me similar stories. So many people shared, in fact, that I began to think, “there’s more to all this than most people are talking about.”
A hundred years ago, a man named Eden Philpotts wrote:
“The universe is full of magical things patiently waiting for our wits to grow sharper.”
So much of what we take for granted is made of discoveries that would have seemed completely fantastical—even frightening—not very long ago. When I began to read the science community’s explorations of the source of consciousness, I braced myself, thinking there would be hard proof that consciousness could not survive the death of the body. Instead, I discovered that science calls consciousness “the hard problem.” Two of the certified mediums that I mention in the book, Laura Lynne Jackson and Karissa Dorman, have had neuroscientists record the electrical activity in their brains, via EEG brain mapping, while engaged in psychic activity. The resulting data showed significant abnormality during the psychic state. Since there are very often no objective truths in this world, we each must determine, for ourselves, our personal truths. In LITTLE MATCHES, I recount what happened to me, with no attempts at persuasion. I would just encourage people to ask their own questions and look for the answers that resonate with their own intuition.
I’m very curious about your role as an end-of-life doula and your work as a Reiki practitioner. My massage therapist will do Reiki with me occasionally and I am always intrigued—and shocked—by how accurate it seems to be. I know the two are different: doula and Reiki master. Can you share a little of both, please?
I’m glad you asked. Offering full-spectrum support to people who are living with serious, terminal illness is important, and that’s why I completed the reiki and doula programs. Most people do not know what an end-of-life doula is, never mind what one does. The field is so new. The word doula is ancient Greek for “woman (one) who serves.” An EOL doula is like a birth doula, only on the other end. In our culture, we go overboard preparing for birth, but “hope for the best” at the end of life and consequently, people scramble and suffer more than necessary. So if you find yourself given a terminal diagnosis, and you and your family are overwhelmed with all the emotional and practical issues you must cope with, you can bring an EOL doula on-board to help you cope. Imagine an empathic, supportive assistant who can help you and your family with whatever you need helping with as you navigate this final, overwhelming life transition. Doulas support clients in whatever ways the client needs supporting: emotional, physical comfort, spiritual, practical. They sit vigil, give hand massages, help to craft life interviews, walk dogs, make snacks, coordinate with the hospice team to make sure visits are in order, help plan funeral arrangements. You name it, a good doula can do it. I saw for myself, how horrifying it is, during a medical crisis and then after a death, to realize that life keeps going and needs attending to. The doula is the one who can help when “doing” is impossible.
As for Reiki, it’s energy work. The training prepares you to be a kind of conduit between the universal energy that surrounds all of us so that you can transmit it to a person in need of an energy boost or clearing. Some people are more sensitive to energy than others. There were times in the training when I thought, hmm, is this for real? Yet I knew it was, because I’d actually decided to do the training because Caitlin and I frequently experienced physical, volt-like energy exchanges when I would perform the chest physical therapy her cystic fibrosis required her to do daily. I wanted to see if I could learn to control the energy.
When I was volunteering for the very popular and well-regarded Reiki program at Boston’s Brigham and Women’s Hospital, I felt that the true gift of Reiki was closing a patient’s door, turning on soft music, and providing the patient with twenty minutes of undisturbed, kind attention. People love it. I preferred working with the very sick (I think they need kindness most), and sometimes the energy was something I could feel, see, and (rarely), hear. I once saw a white, ring-like cloud around a woman’s head; she had passed by the time I came back a week later. Another time, I had my hands wrapped above a patient’s head and the energy was electric, like a hornet’s nest. I discovered later that his issue was a brain tumor. Energy is certainly a thing, but it’s an invisible thing and we don’t generally pay attention to it. But once you get in the habit of paying attention, you’ll be surprised by what you can experience.
It’s been a few years. How are you doing now? What three things are you most looking forward to this summer?
As I learned early on, the grief doesn’t go away, it just gets different. I’m grateful for the loved ones in my life, even if many are scattered around the globe. Caitlin’s cousin Sinead is getting married in July in Ireland and we’ll be there. Katie, Caitlin’s “almost-sister,” who’s been living in Spain with her Spanish husband and two kids, will be home all summer. Summer in New England is kind of brief so I always try to “enjoy the moment” of our beautiful back yard and river, and share it with guests. I love to cook and entertain. I will also spend time planning a December trip to Kenya so we can visit The Leo Project: the student resource center and The Caitlin O’Hara Community Health Clinic, which Caitlin’s best friend Jess created in Caitlin’s honor. This in spite of her own breast cancer diagnosis at age 32. Inspiration and purpose in life—that’s what it’s all about.
Maryanne, this has all been so wonderful. I treasure this conversation. Is there anything I should have asked, but may have forgotten? Or maybe something you’d like to ask me?
I could keep talking. I LOVE talking to thinking readers like you. Thank you so much! I guess I’d just like to say that I hope that everyone who reads LITTLE MATCHES will be inspired to think deeply about life, and purpose, and what’s really important at the end of the day. Even if you live a long life, it’s a short life. We are a blink in time. Revel in that blink.
FOR MORE INFORMATION, TO CONNECT WITH MARYANNE O’HARA, OR TO PURCHASE A COPY OF LITTLE MATCHES, PLEASE VISIT:
- Support your local in-person bookstore or order through Bookshop.org
- This title may also be available through other online sellers.
- See all books in the May 2021 author interview series on Mothers & Mental Illness HERE.
- Upcoming (and past) May Memoir Monday/Mental Health/Mothers: Vince Granta/EVERYTHING’S FINE (5/3), Deborah K. Shepherd SO HAPPY TOGETHER (5/5), Mary Kubica/LOCAL WOMAN MISSING (5/12), Claire Phillips/A ROOM WITH A DARKER VIEW (5/17), Tori Starling/CRAZY FREE (5/20), and Nicole Bokat/THE HAPPINESS THIEF (5/26).
ABOUT THE AUTHOR:
Maryanne O’Hara wrote and published short stories before researching and writing Cascade, a novel that explores “what lasts.” Shortly after its publication, her daughter Caitlin’s lifelong health condition worsened, requiring the family to uproot from Boston to Pittsburgh for more than two years to wait for a lung transplant. Her memoir, Little Matches: A Memoir of Grief and Light, will be available by HarperOne on April 20.
CASCADE was the Boston Globe Book Club’s inaugural pick, a finalist for the Massachusetts Book Award, and a People Magazine Book of the Week; and a story collection was a finalist for the Flannery O’Connor Award for Short Fiction. Since Caitlin’s passing, Maryanne has also been certified by the University of Vermont’s Larner College of Medicine as an end-of-life doula, so that she may better speak to the state of end-of-life care in our culture.
ABOUT YOUR HOST:
Leslie Lindsay is the creator and host of the award-winning author interview series,“Always with a Book.” Since 2013, Leslie, named “one of the most influential book reviewers” by Jane Friedman, ranks in the top 1% of all GoodReads reviewers and has conducted over 700 warms, inquisitive conversations with authors as wide-ranging as Robert Kolker and Mary Kubica to Helen Phillips and Mary Beth Keane, making her website a go-to for book lovers world-wide. Her writing & photography have appeared in literary journals and online. She is the award-winning author of SPEAKING OF APRAXIA: A Parents’ Guide to Childhood Apraxia of Speech, soon to be released as an audio book by Penguin Random House. She is represented by Catalyst Literary Management.
Leslie’s memoir, MODEL HOME: Motherhood, Madness & Memory is currently on-submission.
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