Essays

The Book That Didn’t Break Out and the Disease That Did

By posted at 6:00 am on May 1, 2013 3

1.
You hope that when your book is published, it will break out.

It will reach some sort of tipping point, and suddenly you’re selling not piddling hundreds but thousands of copies. Success will breed more success; it will spread. You know that the chances of it happening are slight, and that you’re being naive to hope for it. But secretly you hope anyway.

coverI secretly hoped that my debut memoir would make at least a small splash. I knew that by its very nature — it was about my experiences as a new mother of twins, and my struggles with clinical depression during that time — it wouldn’t appeal to everyone. I wasn’t deluded enough to think it would be the next Eat, Pray, Love. But maybe, I hoped, I would get lucky, and it would become the equivalent of that book for expectant or new moms.

In the weeks leading up to the book’s release, I worked tirelessly to get the pieces in place: I contacted bloggers and wrote pieces to submit for publication in conjunction with the release. I lined up readings at bookstores and talks with Mothers of Twins clubs. I Facebooked and Tweeted my fingers to the bone. I waited for something — anything — my publisher was doing on the publicity front to bear fruit. I even, ridiculously, wished for success when I blew out the candles on my birthday cake a month before publication. (A wish that could have been much better spent, in retrospect.)

I hoped, I planned, I pushed, I wished. And then the book was published. I got some very positive reviews, some lovely letters from readers, and a few halfway decent publicity opportunities. But the flame never quite caught. Things just politely smoldered.

2.
coverOne month after Double Time was published, we brought one of our five-year-old twin daughters, Clio, to see her pediatrician. Her legs and hips had been aching, and she was having occasional abdominal pain. She was also having fevers several times a week that would flare in the late afternoons, drain her energy and appetite, and be completely gone by the next morning.

The doctor drew blood for a complete count and tested for Lyme disease and arthritis. The results were all negative. She seemed to be fighting a virus, they said. They were quite certain of this, because her white blood cell count was a little high. Nothing to be alarmed about. Come back if the symptoms persist or get worse, they said.

The symptoms did persist and get worse, and after another cursory visit to the pediatrician, we asked to be referred to a rheumatologist. While we waited for the date of that appointment to arrive, Clio’s fevers became more frequent. She was hobbling from pain in her legs much of the time. Then she began developing isolated hives on her torso and arms that would bloom to the size of a splayed adult hand and vanish within the space of minutes. After several days of this, she spiked a 105-degree fever.

I brought her immediately to the emergency room of our local hospital, where the doctor ordered the same blood tests that had been run three weeks earlier. While I appreciated her thoroughness, I couldn’t imagine the results would be any different such a short time later.

But they were. This time Clio’s white blood cell count was abnormally high. Her platelet and red blood cell counts were abnormally low. She was immediately hooked up to an IV line for antibiotics — her immune system was essentially non-existent at that point, the doctor explained — and we were transferred by ambulance to a hospital in downtown Boston. Less than 48 hours later, Clio had been diagnosed with acute lymphoblastic leukemia.

“How is it possible,” I asked the oncologist who gave us the news, “that her blood tests were normal three weeks ago? Was it a mistake?”

“Leukemia can do this,” she replied. “The leukemic cells can be brewing in the marrow for months, and then they hit a sort of tipping point and break out into the rest of the body.”

While I’d been planning, pushing, and preparing for my book launch, mutated white blood cells in my daughter’s body had been stealthily multiplying, on a mission to crowd her healthy blood cells out of her marrow and her bloodstream completely. But their success, unlike my book’s, was inevitable.

3.
It’s a commonly held misperception among writers and would-be readers that in order to write a compelling memoir you have to have done or experienced something unusual or extraordinary.

But this is false. You don’t have to be famous. You don’t have to have had a miserable childhood, an addiction, or a life-threatening disease. You don’t have to have to have scaled Mount Everest blind or done something cleverly intentional like making every recipe from Mastering the Art of French Cooking in the course of a year.

covercovercoverYou can write about a friendship, as Gail Caldwell does in her tender memoir Let’s Take the Long Way Home. You can write about losing loved ones, as Joan Didion does in The Year of Magical Thinking and Blue Nights. You can write about becoming a mother, as Anne Lamott does in Operating Instructions.

What makes these books engaging is not the authors’ experiences — none of which are particularly exotic or unique — but how she writes about them. How they change her. How she makes us think or laugh or cry or simply feel less alone.

Likewise, there’s nothing remarkable about the story I relate in Double Time. I give birth to twin daughters, I muddle my way through the first few years of their lives, try to achieve so-called work-life balance, and battle serious clinical depression along the way. It wasn’t the easiest three years of my life, but as I admit to myself in the introduction, it’s hardly an example of the triumph of the human spirit in the face of impossible odds. I didn’t write to book to be that; I wrote it because I thought it would be helpful and entertaining to new and expectant moms. That’s all.

Still, I had to make the same argument to myself — about what makes for a good and worthwhile memoir — on a regular basis as I was writing the book and, later, when I was promoting it. Repeatedly, when my confidence flagged and my inner literary snob rolled her eyes, I reminded myself that I did have the right to tell my story and urge others to read it, and that I wasn’t self-indulgent or narcissistic to do so.

It wasn’t Important Literature; that much I knew (and know) for sure. People wouldn’t be reading it decades from now, except perhaps doctoral students exploring the bizarre, early-21st-century craze for first-person writing about parenthood. But it was worthy of having been written. And people would want to read it. It was a good book. A very good book.

You have to engage in this sort of self-deception if you plan to publish, assuming you aren’t completely confident in and enraptured by your own writing. Otherwise, you might as well keep your manuscript in a drawer.

4.
The first night I spent in the hospital with Clio was the worst night of my life.

While my baby — my very heart — lay hooked up to monitors and bags of fluid, feverish and fitfully sleeping, I cried silently, unable to stop. I hadn’t eaten since that morning and almost fainted in the middle of the night when I got up to use the bathroom. I crawled into Clio’s bed and lay by her side for a while, but the warmth of her body, the familiar, yeasty smell of her perspiring head, the rhythm of her breath, the very aliveness of her — it was almost too much to bear.

At that point I had no idea how treatable childhood leukemia was, and how high the survival rates. I thought I was going to lose her.

Awake at two a.m., knowing that sleep was unlikely, I turned on my laptop and sent brief emails to three of my closest friends explaining what was happening. In my inbox were dozens of conversation threads from the previous few weeks. They included messages from my publicist; from a friend who’d arranged a reading for me at her community library; from a Boston Globe reporter doing a story on my book and me for an upcoming issue. There was a Google alert message for the keywords “Jane Roper” and “Double Time.”

I felt an almost physical sense of revulsion and embarrassment at the very existence of my book. How could I have written something so trite, so flimsy, and so unimportant? (The precious descriptions of the girls’ toddler antics, the stupid jokes about spilled breast milk…) Yes, the book goes into great detail on my struggles with depression, but even this seemed trivial — it didn’t threaten my life; it could be treated with medication, and successfully was — compared to the horror I faced now.

This feeling of shame was followed almost immediately by knife-sharp grief for everything contained in the book’s pages. Between those covers were my daughters’ first words and steps; their tantrums and mishaps; their soft, sleeping faces. On those pages, I’d described in loving detail the strange satisfaction of nursing my girls simultaneously; the secret feel of their eight-limbed movement inside my belly.

Although it was now a year and a half beyond where the book’s narrative ended, and although life changes fast as babies become toddlers become children, the days I described didn’t feel remote. We were still the family I wrote about in the book. Rather, we had been 18 hours earlier.

If recalling my book from the shelves had been possible, I would have set the process in motion that night.

5.
During our first days in the hospital, as we came to understand that we would not be leaving for several weeks while Clio completed the first, intensive phase of chemo, we canceled and revised work and personal obligations accordingly.

I bowed out of that upcoming library reading of Double Time — it was to have been the last stop on the modest “tour” I’d cobbled together for myself — unable to imagine standing before a group of people and reading from my book. Unable to imagine myself ever doing it again. I’d hoped and pushed for a paperback release of the book, but that seemed ridiculous now, too.

And then, two weeks into our hospital stay, the Boston Globe feature story I’d been interviewed for several weeks earlier — the day after Clio’s first visit to her pediatrician, in fact — was published. There I was with the girls on the cover of the Lifestyle pullout section in full color. In the photo, taken on our back porch, my nose is to my daughter Elsa’s cheek, my teeth bared in a silly grimace, while Clio sits at my feet.

She had cancer in that picture. It just hadn’t “broken out” yet.

Any author would have been thrilled to have their book covered in a major story in a major metropolitan paper. And I’d been thrilled, of course, several weeks earlier when I found out that it was going to happen. But now, all I felt was deflated — and (irrationally, I knew) guilty. As if I’d fabricated the whole story and gotten away with it. I felt none of the joy or pride that I’d imagined I would feel when it was published.

And when friends emailed to congratulate me on the story or posted links to it via various social media networks, I was embarrassed. I wanted to protest — no, no, no, please — like the person who genuinely hates being sung “happy birthday” to at restaurants.

I didn’t want the cake with the candle in it. I didn’t want any of it.

6.
Nine moths later, we have settled into the “new normal,” of life with cancer.

The treatments for childhood leukemias are protocolled, meaning that for each form of the disease there are specific courses of treatment. In Clio’s case, that means two and half years of chemo and medications, and frequent clinic visits and doctor appointments. She has a port-a-cath implanted in her chest for blood draws and administration of chemo, which will remain for the duration of her treatment. We have to be ever vigilant of germs, and a fever of 101 or above means an automatic hospitalization for antibiotics and tests.

Although we’ve had a few bumps in the road — a couple of rare, adverse reactions to her chemo, one of which landed Clio briefly in the intensive care unit — Clio is doing well. Our family is doing well, though of course Clio’s illness is a source of stress and worry. At the same time, I am working and writing and generally happy.

Meanwhile, a paperback version of my book is on the verge of being released. When Clio was first diagnosed I couldn’t imagine even wanting this to happen, let alone feeling excited or hopeful about it. If her prognosis were direr, the very idea of the book being resurrected in a new form would probably appall me.

Instead it’s simply strange, knowing that people will read the book having no idea that the lives of its protagonist (me) and the supporting cast have taken a dramatic turn.

Then again, all memoirs are obsolete by the time they’re published to some degree, especially if they describe the recent past, as was the case with mine. Our perceptions of our distant past are more static. But in the year or so (or more) between the time a recent-past memoir is completed and when it is released, the author is that much more emotionally removed from the events she describes. And her life may well have taken dramatic turns. I feel a certain kinship with Joan Didion, whose daughter died in the interim between the completion of her memoir about her experience of her husband’s death, The Year of Magical Thinking, and its publication.

I am asked on a regular basis if I plan to write a book about this new, perilous journey our family is on. Certainly the thought has occurred to me. But it will be some time until I know the answer definitively. Clio has another year and a half of treatment to go — assuming she does not relapse at any point along the way. Even if she does complete her treatment successfully, she will not be considered “cured” until she is disease-free for five years.

With an approximately 90 percent cure rate for her type of leukemia, the odds are entirely in her favor. So there’s a 90 percent chance that if I wrote a memoir about my experiences as a “cancer mom” prior to that five-year mark, the ending — an ending in which we are still a family of four — would still be true at the time of the book’s publication.

But for now, I’m holding that decision at bay, and trying my best to embrace the book I already wrote; trying to remind myself that everything contained within its pages is still valid and still true, despite how distant it may feel from the truth of my life now.





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3 Responses to “The Book That Didn’t Break Out and the Disease That Did”

  1. Jerri Lee George
    at 10:49 am on May 1, 2013

    A fellow newbie author, I related much to your article. Your description of the pushing, hoping, wishing for the success of your book hit close to home. I think the age old question comes immediately to mind… why must one often suffer great sadness or tragedy in conjunction with great joy or success? We don’t and can’t know, but we turn to God to shore up the crack in our faith. I’m a FB follower of yours and have watched your posts for news about Clio. I have prayed for her and I simply wanted to let you know that because of “Double Time” many who never would have known about your family’s plight have and will be praying. I did not buy your book, since I’m a mother of teenagers in her 50’s and it didn’t speak to me, however, your publicity efforts did pay off in that I would buy it for a gift and I think the name and cover are precious! I don’t believe that anything that confronts us in this life is for naught (I am a Bacterial Meningitis survivor) but as I ready for the launch “success” of my own book, my 89 year old mother lies in the hospital with pneumonia and I fear she will not recover to see my book “fly” off the shelves. Your book’s success, like thesuccess of Clio’s treatment is still unknown but I pray for divine intervention and peace/joy in your life.

  2. Kelly Hand
    at 2:04 am on May 3, 2013

    Your story reminds me of why I write fiction! It is brave to share your story with the world, and then I imagine it feels odd to wonder who out there is actually sharing it with you. Your thoughtful essay reminds us that a memoir only captures an author’s perspective at a certain point in time: even if the memoir looks back at the past, it is a past that is always being redefined by the present. Best of luck to you in finding a large audience for your book’s paperback edition.

  3. Debbie
    at 12:15 am on December 17, 2013

    Really nice essay–the insights, the writing, the flow of it, and your narrative voice.
    I love Didion and Lamott. Now I’ll have to pick up Caldwell and…you!

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