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NOTE (Wednesday, February 7, 2018): This feature has been updated to correctly reflect Mike Sager’s current position with Esquire magazine.
In January 1991, when he was 15 years old and a freshman in high school, Matthew R. Tullis was diagnosed with acute lymphoblastic leukemia.
He spent 67 days in the ward 4-North at Akron Children’s Hospital during his first stay at the hospital. Over the next four years, the young Ohio resident was in and out of Akron Children’s Hospital more than two dozen times, traveling 42 miles between Akron and his family’s home in Apple Creek, for chemotherapy treatments and follow-up procedures.
His final visit was in December 1997, following a series of six-month checkups.
Now a Newtown resident, the assistant professor of English and digital journalism at Fairfield University recently released his first book. Running With Ghosts: A Memoir of Surviving Childhood Cancer was published by The Sager Group in August 2017. It is a well-written book that helps fellow cancer survivors relate to one patient’s journey.
Mr Tullis also sees the work as something that anybody who has experienced any kind of loss can get something from, he said.
“Not just cancer survivors, not just parents of cancer survivors, or even caregivers like nurses and doctors, but really the idea is that we can keep people’s memories alive by telling stories about them.
“I think that transcends disease,” he said. “I hope that it will be able to carry that out.”
Mr Tullis will be at C.H. Booth Library on Thursday, February 22, for a reading and author talk scheduled to begin at 7 pm.
The topic of his first book was an easy choice.
“I’ve been writing about this forever, for the most part,” Mr Tullis said recently. The first time he wrote about his battle with cancer was for an essay contest in high school. The topic returned in college.
“As an undergraduate in college, I was a journalism major, so I was writing then. When I went and did my MFA, I did it in creative writing,” he said. “For whatever reason, it was the one thing I felt like I wanted to write about most often.
“I think that was simply because I was young enough, and that was the most important thing that had happened to me,” he continued, “and so that was the most natural thing for me to write about.”
Mr Tullis earned his Master of Fine Arts in creative nonfiction at the University of North Carolina at Wilmington, after having earned a Bachelor of Arts in journalism/English at Ashland University in Ohio. He worked at a daily newspaper for ten years before shifting gears and becoming an associate professor of journalism and digital media at Ashland. He and his family — wife Alyssa, and their children Emery and Lily — moved to Newtown after Mr Tullis was selected for his current position at Fairfield University.
Mr Tullis laughed at one point during his talk about the book. Being a professor, with that MFA in hand, he said, the natural inclination is “to write and be published.”
Running With Ghosts, he told The Newtown Bee, “is about my fight with leukemia as a teenager, but also about remembering those I knew who didn’t survive their own cancers.
“I write a lot about my doctor, one of my nurses, and three other patients I knew, all who died of cancer over a four-year period,” he said.
The book opens in autumn 1990, but moves quickly into January 1991. It was Mr Tullis’s freshman year of high school, when he was recovering from a hernia operation, fighting off a lingering cold, and napping constantly.
It was also when he first heard the word leukemia. At the time, he shares, his sports-loving brain thought that having the same problem that baseball great Lou Gehrig did would be cool.(He did not have ALS, or Lou Gehrig’s Disease, but the ballplayer in him thought his mother said something about Lou Gehrig’s disease when she was driving him to the hospital for the first set of tests that began his medical journey.)
For the next 200-plus pages, Mr Tullis shares his journey into sickness, teetering on the verge of death, and his slow return to health.
He describes in great detail the excruciating pain of bone marrow aspirations, the cigarette smell that seemed to always accompany third shift nurses, even the acidic taste of vomit rising in his throat following chemo treatments, among other sights and smells familiar to any cancer patient.
He also introduces readers to fellow patients from 4-North, some of whom became friends, including three who did not survive their cancer. Melissa Lanning died at age 21, Todd Seitz was 17, and Tim Snyder was 20 when he died. He brings each to life through memories that make readers smile, and also occasionally catch their breath.
In addition to reliving his story, Mr Tullis’s memoir shares epilogues of some of those who cared for him — his doctor and favorite nurse both succumbed to cancer — and the three young patients mentioned above.
A recreational runner, Mr Tullis shared in the Prologue of Running With Ghosts that “the shoes of ghosts from a lifetime ago” are laced up each time he puts his shoes on for a run.
Mr Tullis and his family moved into Newtown last year, shortly before his memoir was published. He has done a few book events already for Running With Ghosts, including a September 2017 event in Akron, Ohio, where he was treated, but the February event will be the first in his current hometown.
In creating his memoir, Mr Tullis relied not only on his memories — although many from the times in the hospital, he says in his Author’s Note, are admittedly fuzzy and not completely reliable — but plenty of interviews, medical records, nursing flow charts, and correspondence with family members of the late Dr Alex Koufos, Mr Tullis’s lead physician; Janet Creech-Forrer, one of his nurses; and several fellow patients.
He also relied on videos, newspaper articles, diaries, and other writings by those he wrote about in order to make the work as reliable as possible. He even went as far as checking online archives to confirm weather conditions.
“I didn’t have any notes, I didn’t have any diaries at all,” he said of the period of his life that is the basis for Running With Ghosts.
Beyond descriptions of illnesses and treatments, blood counts and hospital sounds, the book is a great time capsule. Mr Tullis works in snippets that define the time frame perfectly, from the movie that was playing the night before he went to the hospital the first time (Home Alone) and the songs he listened to during some difficult days at the hospital (including Jon Bon Jovi’s “Blaze of Glory”) to some of the music playing the first time he went to a patient camp (“More Than Words,” the song by Extreme that was everywhere in 1992), and even the mention of a T-shirt with the Bugle Boy logo, one of two T-shirts he always wore while staying at the hospital.
The book’s cover is the ultimate time capsule. It is a rendering of his medical charts, right down to notes from and the signature of Dr Koufos.
“I love that it has my doctor’s name on it, and his handwriting, and even the logo for Akron Children’s Hospital,” Mr Tullis said. “I love to talk about the hospital. It’s a very important place to me.”
The creation of the cover was a collaborative effort between the author and his publisher.
“I can’t imagine having a better cover,” he said.
“There aren’t a lot of memoirs about surviving cancer,” Mr Tullis said. “Publishers try to avoid them.”
His literary agent, he said, pitched the book to 30 “major publishers,” who all turned down the presentation.
“Many said they loved the writing, it was inspirational, but nobody’s going to buy this book,” Mr Tullis said, paraphrasing the multiple responses he and his agent received. His agent told him early on, he said, that his book was going to be a hard sell.
It was a Facebook post that turned things around for Mr Tullis. He posted a list of the publishers his agent had reached out to, and been turned down by, along with a note that while his agent had given up, he was still confident they would find something “at some point and time.”
Mike Sager, a contributing editor for Esquire magazine, and the founder of The Sager Group, saw that post.
“He sent me a message that was basically ‘Send me the proposal,’” Mr Tullis related. After doing some research about The Sager Group, and then sending the requested sample, Mr Sager responded almost immediately, said Mr Tullis, “and became my publisher. “
“So it was hard to find somebody, but then it was easy,” Mr Tullis said, laughing.
Copies of Running With Ghosts: A Memoir of Surviving Childhood Cancer can be purchased at Barnes & Noble (in stores and online), Amazon.com, and other book stores. A e-book is available online through Smashwords and Amazon.com.
Additional information about Mr Tullis’s 60-minute program at Booth Library is available by calling 203-426-4533.