Earlier this summer, I was the guest on the podcast What’s Kraken with Jo Szewczyk. I had fun talking to Jo about writing, books, music, and life. Jo is the author of the memoir Surviving Gen X and the forthcoming novel Scarlet Shadows. You can follow him on Instagram @szewczyk.jo or find out more about him here.
The episode is also available on Spotify and Apple Podcasts.
This past Thursday, July 30, I held a local author talk and Q-and-A at Utica Public Library on Genesee Street in Utica, New York. Two senior citizens attended, and their presence pleased me because as the time for the 6 p.m. event drew near, I thought no one would show up.
Utica Public Library exterior. Photo by Kenneth C. Zirkel.
The talk was held in the Music Room on the second floor of the brick Neoclassical building erected in the early 1900s. I took an Uber because I was nervous about getting lost in Utica (as I had so often done in my youth when traveling to the city from my nearby hometown of Rome). As we traversed eastbound along the New York State Thruway, the Uber driver and I had a nice conversation. He’s a retired journalist and corporate communications professional who still does freelance work. We discussed the decline of journalism, the state of higher education, and writers we admire, including Stephen King and Richard Russo.
I arrived shortly after 3:30 p.m., and an easel displaying a large poster board with my book cover image greeted me as I entered the library. Flyers were also posted. The library was busy with mothers and their children perusing and checking out books and some adults using the computer room.
I introduced myself to the staff member who reserved the space and booked the event for me. She directed me to the second floor. I walked around for a bit, then headed upstairs, passing through an art gallery on the second floor and gazing at works by local artists hanging on the walls.
As the afternoon wore on, I debated going outside to walk along Genesee Street, maybe stopping at a Starbucks or another coffee shop. But I didn’t want to leave my books behind, and I didn’t want to carry my heavy book bag. I also had some trepidation about the safety of the neighborhood, so I stayed inside.
I set up my books on a long table at the front of the Music Room, answered work emails and Teams messages, and read the books I had brought—the novel Tepper Isn’t Going Out by Calvin Trillin (paperback), the memoir Educated by Tara Westover (paperback), and A Deadly Shade of Gold by John D. MacDonald (Kindle). The AC was blasting, the movement of cold air murmuring, and I had to keep my raincoat on the whole time because I was freezing.
Utica Public Library interior. Photo by Francis DIClemente.
After using the restroom on the first floor, I was excited to find my book in the library’s general circulation, sitting on a shelf next to some other memoirs. It had a Utica Public Library stamp inside.
My memoir, Stunted, on a shelf at Utica Public Library.
Then I went upstairs and sat in the Music Room, waiting as 5:30 and then 5:45 p.m. came and went. I stood up and took some photos of the empty space and a selfie to document the “no-show” turnout.
And as I stared out the window of the library, looking at the Munson art museum across the street, I acknowledged within myself the discouragement I feel about my memoir’s reception in the world more than two months after its release.
I poured everything I had into this book, writing it over the course of ten years while working a full-time day job and managing family responsibilities. And while I never expected a TED Talk or a Today show appearance to follow the release of my memoir, it’s disheartening that events have been sparsely attended and I remain stuck on four reviews on Amazon (although they have been positive). Even more so, I thought the book’s universal message of self-acceptance would resonate with a wide variety of readers.
But as I walked around the Music Room, the floorboards creaking beneath my feet, I tried to console myself by thinking a writer or artist’s career has ups and downs, highs and lows, and it’s all part of the journey.
I am also grateful to the people who have read the book and commented on it, the libraries and booksellers who have hosted me, and the local media outlets that have interviewed me or written stories about the book.
I also knew that my wife and son would greet me when I arrived home that night, and I would get up the next day and write before heading off to work at a job that paid my bills and provided health coverage for my family and me.
I was about to pack up my stuff and head downstairs to open the Uber app and book a ride home when a small, older man wearing a blue shirt and jeans held up by suspenders entered the Music Room and sat down. I thought, “OK, one is better than none.”
I asked, “Are you here for the reading?”
“Yes,” he said.
I introduced myself. His name was Bob. We shook hands, and we talked about the Utica area and its history. I asked Bob where the Saranac Brewery was located, and he rose and walked toward a window in the corner. I followed him, and he pointed toward the brewery in an area behind St. Joseph and St. Patrick Church, which could be seen in the distance.
At 6 p.m., I sat down and told Bob I’d read a little bit and then answer any questions he might have. I put on my reading glasses and was reading the prologue when I looked up and saw an older woman seated in the audience. I nodded and said “hello,” and she smiled. She said her name was Lorraine and she lived nearby. She had blond hair and glasses, was dressed in a black shirt and leopard-print pants, and wore a red baseball cap with a Flash Gordon lightning bolt on the front.
I was elated, and I made a point of listening to their questions and being fully present in the moment, giving my best effort for the two people who took time out of their day to attend a local author event.
And we had a pleasant conversation. They asked me about where I grew up, my educational background, medical and family history, and how long it took me to write the book. I enjoyed hearing about their lives. Lorraine claimed she owned more than four-thousand books. She also said she was born premature and the doctor who delivered her tossed her tiny body on a bed and said to Lorraine’s mother, “Don’t bother with her. She’s not gonna make it.”
Lorraine said she wanted to tell the doctor now, “I’m 77 years old, and I’m still here.”
Bob said he likes reading nonfiction, primarily autobiographies, nature books, and books about dogs. He asked me if I was Italian, and when I said, “Yes,” he told me he’s full-blooded Italian. He said he lives alone and shared details about two solo trips he took to Italy and Sicily, including how he met some distant cousins on one of the journeys.
Toward the end of our discussion, Bob asked if he could look at a book. I said, “Sure,” and he grabbed a book, flipped through it, stopping at certain pages, pointing to pictures, and asking me questions.
I felt so happy that Bob and Lorraine had rescued my night that I signed two copies of my book and gave them away to my new friends.
The experience made me think about one of my favorite scenes in the movie Vision Quest. It’s when high school wrestler Louden Swain (Matthew Modine) visits his friend, hotel worker Elmo (J.C. Quinn), who has taken the night off to watch Louden wrestle against Brian Shute, the best wrestler in the state of Washington. The writing and acting in the scene deliver such emotional power.
Louden tells Elmo that he shouldn’t have taken a night off from work because his pay would be docked, and that his six-minute wrestling match is “not that big of a deal.” Elmo gives a monologue about watching Pelé on TV during a soccer game, and he ends his speech with the line, “It ain’t the six minutes. It’s what happens in that six minutes.”
And the lesson for me is: It isn’t about how many people show up at a reading or event or the number of ratings and reviews on Amazon and Goodreads. It’s about the connection you form with the people who do read your book and attend your events.
I also thought, OK, so I’ll never win a Guggenheim fellowship, sell the movie rights to my book, be a bestselling author, or earn a living from my writing alone. Still, I can continue to write in my spare time and contribute something positive in my own small way.
For friends and readers in the Central New York area, I have some events scheduled to promote my memoir, Stunted: A Memoir of Delayed Manhood (Toplight Books, an imprint of McFarland and Company, 2026).
I’ll be giving a reading and signing books at Parthenon Books on Salina Street in downtown Syracuse this Saturday, July 25 at 1 p.m. I’m also excited to use up $15 in store credit.
A “Local Author Talk” is scheduled for 6 p.m. on Thursday, July 30 at Utica Public Library on Genesee Street in Utica.
And on Saturday, August 8, I’ll be joining other writers at a Local Author Showcase at the Barnes & Noble store in Dewitt. The time is 2 to 4 p.m.
For those unfamiliar with the book, here is a description, along with some archival photos (which appear in black and white in the book).
Overview of Stunted:
For most children, puberty marks their rite of passage into the cusp of adulthood—a time of profound physical and emotional transformation. It’s a period where they grapple with questions about identity, their place in the world, and what they desire from life’s experiences.
Here’s me, likely in the mid-1980s.
For Francis DiClemente, during his turbulent adolescent and early adult years spanning 1984 to 1995, frustration and shame consume him. When he turns fifteen, his growth stops, and he watches helplessly as his friends cross through puberty and into adulthood. Doctors diagnose him with hypopituitarism, uncovering a tumor engulfing his pituitary gland. Yet the removal of the tumor fails to fix the problem. DiClemente enters college as a youthful, androgynous figure—a prodigy sans the hyper-smarts.
During my college years, in the late 1980s.
He lags behind his male peers in every aspect—lacking the stature, hair growth, and muscle definition that come naturally to others his age. This disparity further erodes his self-confidence, particularly in his interactions with women.
When DiClemente leaves his childhood home after college and embarks on a career in journalism, he discovers a new perspective on masculinity. Living independently and embracing this responsibility, he learns that manhood is determined by behavior, not physical characteristics.
Through the lens of personal experience, Stunted: A Memoir of Delayed Manhood delves into the universal themes of belonging and resilience, providing a message of hope and inspiration for those navigating their paths of self-acceptance.
With my cousins Fiore DeCosty (left) and Derek DeCosty (standing) with our grandmother, Josephine, in the bottom right of the frame (1990).
With graduation party season in full swing, I thought I would share an excerpt from my recently released memoir, Stunted: A Memoir of Delayed Manhood. The excerpt covers the time period after I graduated high school from Rome Free Academy in my hometown of Rome, New York, and prepared to enter my freshman year of college. Warning: Adult content follows.
From Chapter Ten:
I graduated high school in June 1987 as a shy, sexless adolescent unprepared for the social landscape of college life. Decked out in my cap and gown, I stood a half head shorter than my mother and sister as we posed for a picture in our backyard on graduation day.
And here’s a catalog, a list of experiences I failed to check off before finishing high school, departing Rome, and heading to the campus of St. John Fisher College, a small, liberal arts college (now renamed St. John Fisher University) in Pittsford, New York, a suburb of Rochester:
I never went on any one-on-one dates.
I never bought flowers for a girl (except for one Valentine’s Day in elementary school).
I never drove a car to a girl’s house to pick her up and meet her parents—getting their permission to take her out for the night.
I never had a serious girlfriend.
I never put my arm around a girl at an RFA football game or held hands in a darkened movie
theater.
I never kissed a girl on the lips.
No fumbling with bra straps in the backseat of a car or feeling a warm breast while sitting on a couch at a house party.
I never made love in a girl’s bedroom while her parents were out of the house.
And at age eighteen, even if a girl had offered me the opportunity to have sex, I would not have known for sure where to put my penis during intercourse.
My inexperience with the opposite sex weighed on me as I spent my final summer at home. During one weekend in late August, my friend Billy and I went to McDonald’s to hang out in the Uptown area (a section of Rome where teens congregated).
On a warm, humid night, we stood in the deserted parking lot under the glow of the illuminated golden arches, talking with our friend Chad, who had ridden his bike to the area from east Rome. He was leaning on his handlebars, dressed in a white concert T-shirt, and we were talking about me going away to school. I said, “I’m a little nervous. I don’t know how it’s gonna be. I don’t know if I’ll fit in.”
“Ah, don’t worry about it, Franny,” Chad said. “You’ll get your helmet polished by the girls there.”
I had a sense he was referring to blow jobs, but I wasn’t one hundred percent sure. I gave a good laugh to cover my lack of knowledge, and said, “Thanks, Chad, I hope you’re right.”
From Chapter Eleven:
Although my parents must have sensed my unease about attending college while looking like a fourteen-year-old boy, my father offered me no advice on how to deal with it, and my mother lacked empathy for my situation. She told me to stop being sensitive when other people questioned my age. In conversations with family members, co-workers, and restaurant servers, she would say, “He gets so upset if someone asks him about his age. He has to learn to accept it.” But Mom exhibited compassion through her actions by taking me shopping in New Hartford and buying me sheets, towels, toiletries, and other essentials for college life. She taught me how to do laundry, informing me about the basics of temperature cycles and the importance of separating colors from whites, and she also made sure my financial aid paperwork was submitted on time.
As I made my final preparations before departing Rome for the fall semester in 1987, my sister Lisa allayed my fears with sage advice based on her experience as a student at Hartwick College in Oneonta. When I told her how I knew the other kids would question me because I looked so young for my age, she said, “What you have to realize about college is that everyone has something that they don’t like about themselves, something they want to hide. Some girls are fat. Some guys have acne all over their faces, or they sound effeminate. Everyone has something. You look young for your age, but so what? Don’t think you’re the only one who is different.”
It was exactly what I needed to hear. She also told me, “You’ll be fine once you make a few friends.”
##
If you have read the book, please consider leaving a review on Amazon or Goodreads. Reviews make a big difference for indie authors, helping readers to discover our books. And if you are a blogger or book reviewer and would like a digital ARC to review, please use the contact form to reach out. Thank you!
The Daily Orange, the independent, student-run newspaper at Syracuse University, published a Q-and-A article featuring me and my book, Stunted: A Memoir of Delayed Manhood. I’m honored to appear in the pages of the newspaper, which I read religiously as a staff member at SU. You can read the piece here.
Forthcoming is such a lovely word.
And I’m happy to share the cover image for my coming-of-age memoir, Stunted: A Memoir of Delayed Manhood, which is slated to be published later this year. It was a long, hard road to get here, but I am honored that the story has found a home with Toplight Books, an imprint of McFarland & Company.
Cover image for my memoir.
The book is also listed on Amazon, Bookshop, and Goodreads.
I began researching this project in June 2013 after marrying my wife, Pam, who has been a steadfast supporter, cheering me on along the way. I obtained medical records dating back to 1984 and incorporated journal entries from the early 1990s. So in many ways, I’ve been writing this memoir my whole life. The impetus to write the book sprang from a long blog post I wrote in December 2014 to mark the 30th anniversary of my initial brain surgery at SUNY Upstate Medical University Hospital in Syracuse, New York.
At Walt Disney World in 1985, a few months after my initial brain surgery.
When I started working on the memoir, I realized I needed to study the genre, so I read the classics like Angela’s Ashes by Frank McCourt, The Liars’ Club by Mary Karr, This Boy’s Life by Tobias Wolff, Running with Scissors by Augusten Burroughs, Wild by Cheryl Strayed, Stop-Time by Frank Conroy, Eat, Pray, Love by Elizabeth Gilbert, I Know Why the Caged Bird Sings by Maya Angelou, and many, many others.
Between that initial blog post and the completion of the book, life intruded.
I had two brain surgeries, was diagnosed with rheumatoid arthritis, mourned the loss of my stepfather, Bill Ruane, my Uncle Fiore DeCosty (nicknamed Fee), and two cousins, Derek and Damon DeCosty. I published numerous poetry collections, wrote a play that was produced by a small theater in Las Vegas, produced a few documentary films, and earned two Emmy awards. I bought a house (reluctantly), and most importantly, became a father to my son, Colin, who will be ten years old next month and was diagnosed with autism in 2018.
The whole time I was living my life in the present while my head remained partly stuck in the time period from 1984 to 1995, covering the terrain of my high school experience in Rome, New York, my undergraduate years at St. John Fisher College (now named St. John Fisher University), in Rochester, New York, graduate school at American University in Washington, DC, and the start of my professional career back in my hometown of Rome and in Venice, Florida.
Here’s me in either my junior or senior year of high school or my freshman year at St. John Fisher College in Rochester, New York.
And as time elapsed and I wondered if I would ever finish the book, I drafted scenes, wrote a crappy first draft, completed multiple revisions on my own, and then hired developmental and line editors through Fiverr, wrote a book proposal, and sent out countless queries to agents and publishers who accept direct submissions from authors.
While I am ecstatic that the book will be published, I detest the necessity of the promotional phase. But it’s a reality I can’t escape. My intention is for readers to find some universal truth or connection to my personal story.
Here is the book description from the McFarland site.
Set between 1984 and the mid–1990s, this coming-of-age memoir follows Francis DiClemente’s experience of adolescence and early adulthood in a body that struggled to develop. Diagnosed with a rare brain tumor that led to hypopituitarism, DiClemente remained physically underdeveloped while his peers matured into young adulthood. As he navigated relationships and sexuality in college, it became evident that his prolonged experience with physical nonconformity fueled isolation, self-doubt, and shame.
This book explores the impacts of his condition on schooling, intimacy, and emerging adulthood, examining how physical differences shape identity formation. It reframes masculinity not as a function of physical development, but as an ethical and emotional practice grounded in empathy, resilience, and responsibility. Contributing to conversations on embodiment and self-acceptance, the work offers insight into the experience of living at odds with normative timelines of growth and belonging.
And I was very fortunate to have some gifted and generous writers provide blurbs for marketing.
“Francis DiClemente’s searingly honest memoir offers a vital perspective for anyone grappling with their own place in the world.”
—Shivaji Das, author of The Visible Invisibles
“Francis DiClemente and I met as teenagers on a baseball diamond in the summer of 1983, and while I have since gone on to work in a different sport populated by alpha males gifted with superhuman size, strength, and athleticism, I know of no better or stronger example of what manhood truly means than my friend. This moving story of self-discovery, which Francis courageously tells with raw honesty and vulnerability, reminds us that the journey toward fulfillment in life is inward, and should inspire us to be less judgmental—not only of others but ourselves.”
—Bob Socci, broadcaster, New England Patriots
“DiClemente’s journey becomes a lifelong battle, man against regrowing tumor. In these pages, he provides the most intimate details of how he learned to be a man while trapped in the body of a boy. Hopefully, his words, and his honesty, can reassure other boys and men grappling with masculine identity.”
—Angel Ackerman, author of the Fashion and Fiends horror series and founder of Parisian Phoenix Publishing
“This is a deeply moving testament to the quiet courage it takes to claim your identity in a world that insists on defining it for you. For anyone who has ever felt unseen or out of place, DiClemente offers a reimagined vision of identity rooted not in the body, but in the soul.”
—Brittany Terwilliger, author of The Insatiables
“Francis DiClemente has written a book on men and masculinity that should be not only savored but consulted by those men who, at some point in their lives, have questioned what their manhood means and what place it holds in society. And by those men I mean all men. This work might have been born of DiClemente’s many masculine hardships, but it becomes a celebration of what is best in us.”
—William Giraldi, author of The Hero’s Body
“DiClemente delivers an unflinching account of the brain tumor that disrupted normal growth and his participation in one of the first human growth hormone trials. …a touching and compelling memoir.”
—Carmen Amato, author of the Galliano Club historical fiction series
“Francis DiClemente tells it like it is—with no BS. This work is honest, human, and full of hope. I respect the courage it took to write it.”
—William Soldato, author of Under Too Long
“Francis DiClemente’s book is a courageous and beautifully crafted memoir that speaks to the quiet battles so many face in silence. With poetic clarity, brutal honesty, and emotional depth, he explores identity, masculinity, and the long road to self-acceptance. A powerful book.”
—Apple An, award-winning author of Las Crosses, Mother of Red Mountains, and Daughter of Blue City
I’m now working on a second book, which is a continuation of the story. There’s no timetable for completion.
One note about the cover.
My Uncle Fiore took my photo in 1985 at the New Jersey shore. We had traveled to New Jersey from Rome one early fall weekend to visit my cousin, Fiore, who was stationed at an Army prep school in Monmouth County, where he would spend a year before matriculating to the U.S. Military Academy at West Point. I remember listening to Bruce Springsteen’s Born in the U.S.A. album on my yellow Sony Walkman in the backseat on the way down from Rome to Jersey. I connected the song “I’m Goin’ Down” with our southbound travel, and I loved side two of the album, especially the songs “No Surrender,” “Bobby Jean,” and “My Hometown.”
I am celebrating an important milestone today—the 40th anniversary of my first brain surgery to remove a benign tumor engulfing my pituitary gland. I have written about this ordeal many times in the past, including in this long 2014 post.
On this day, four decades ago, surgeons cracked open my skull and extracted the craniopharyngioma that had stunted my growth and delayed my transition from boy to man.
In this essay, I reflect on my experience as a teenager in 1984 while a patient at SUNY Upstate Medical Center (renamed Upstate University Hospital) in Syracuse, New York. I am limiting the narrative period to the day of surgery and my immediate recovery.
Upstate University Hospital
Surgery Day: An Essay
1.
Early morning. Blackness. I can smell the breakfast trays delivered on the hospital floor—watery eggs, ham and bacon, soggy oatmeal, and weak tea and coffee. The noise outside my room grows as patients awaken and nurses draw blood and administer medicine.
My appointment with the medical intervention team has arrived. I am fifteen years old and ready for surgery day, prepared for the trauma that awaits me on the table. My head will be shaved, and my skull sawed open. The tumor growing in my head—wrapped around my pituitary gland and stifling my maturation—will be plucked free, yanked out like an infected molar and then examined under a microscope to determine its classification. We must name our enemies to defeat them.
Once removed, the lesion will relinquish dominion over my body. I will be cut loose from its tentacles. The surgery will disrupt my endocrine system, leading to a permanent condition known as hypopituitarism and propelling me on a long road toward “catch-up” growth and development.
A photo of my father and me two months before the operation in 1984.
2.
A nurse enters my room and hands me a small plastic cup filled with a few pills. “This will just relax you,” she says as I swallow the pre-surgery drugs. About a half-hour later, she returns and says, “It’s time for you to go down now.” A softness squishes against the edges of my mind; I am drifting from consciousness.
An orderly comes to take me away—filling nearly the entire space inside the door frame. A hulking figure with thick, black hair, a black beard, and muscular forearms, he reminds me of Bluto from the Popeye the Sailor cartoons. But for some reason, I call him Hugo.
“OK, Hugo,” I say, “I’m ready now.” Hugo helps me slide over from my bed to a stretcher as the nurse covers me with a sheet and a blanket.
My family gathers around me, bending down to kiss me and wish me “good luck.” What does “good luck” mean on the operating table? I wonder.
Tears stream down my mother’s cheeks, which are red and wind-burned and feel cold against my skin as she kisses my face and forehead; she squeezes my hand and then releases her grip and steps away.
Hugo unlocks the wheels of the gurney and steers it out of the room and into the hallway. Even though I am sleepy, I stay awake for the ride, keeping my eyes open and watching the panels of fluorescent lights pass overhead as we make our way through the hospital corridors and into an elevator. We take a silent ride down to the surgical wing.
The temperature drops when we enter the frigid, sterile operating room. A chill runs over my body; my lips tremble as gooseflesh buds on my arms.
The surgical team members buzz around the operating room, each doctor or nurse carrying out a specific task. They transfer me from the stretcher to the operating table. An overhead light shines into my eyes while I lay splayed on the table.
A nurse covers me with an extra blanket and stretches tight, white stockings over my calves. She says the stockings will help to prevent blood clots after surgery.
One of the doctors sits down near the table and says he will shave my head. When he asks me if I want my whole head sheared or just the front, I make the mistake of telling him to clip only the front. As a result, weeks after the surgery, my hair remains uneven—bald in front and growing long in the back—similar to the long hair sticking out the back of helmets worn by hockey players with mullets.
After they jab an IV in my arm, I grow drowsy, my eyelids shutting; but before I drift off, I tell one of the nurses that I need to pee. The woman chuckles and says, “Oh, you don’t have to worry about that now. We’ve already put in a catheter.”
And then I leave the world—falling under the power of general anesthesia for about eight-and-a-half hours while the surgeons perform their work.
At Walt Disney World in February 1985.
3.
I have often wondered where I traveled to during that gap of time. What realms or landscapes did I explore in my mind while my skull lay open and I remained unconscious on the operating table?
Here is me stepping out of the story momentarily to travel back in time and investigate the scene. It’s a fantasy of the man I hoped I would become once the surgeons extracted the tumor. It’s the future I had envisioned for myself—marked by maturation and normalcy, playing the role of a fully formed male accompanied by a female partner.
A green canopy of trees. A trilling stream. Sunlight filtering through leaves overhanging a hiking path. Birds chirp, and tree limbs sway in the wind.
Boots touch the soft, muddy earth. A man emerges from a wooded path. He is dressed in a red checkered flannel shirt, tan khakis, and hiking boots, and he carries a knapsack on his shoulders. He is about five feet six inches tall, lean and muscular, and has a slight beard.
A twig snaps, and we see a woman walking out of a clearing. She’s wearing a fleece sweatshirt, jeans, hiking boots, and a backpack. The two figures stride toward one another, share a kiss, and then grasp hands. Sunlight bathes them as they leave the clearing and start walking on a path leading over a ridge. They climb the slight incline and disappear as they walk down the other side, their bodies concealed by the curve of the Earth.
Late high school or early college years.
4.
I wake up in a bed tucked in a corner of the surgical intensive care unit. I feel dizzy, and a dull, continuous ache presses against my head as if my skull is being squeezed in a vice. Nurses inject the opioid Demerol into my thighs over several hours to alleviate the pain, and I keep drifting in and out of sleep. I hear machines beeping and the sound of a respirator somewhere on the floor. The gentle sound of the ventilator puts me at ease as I listen to it—in and out, in and out, in and out.
EKG stickers are pressed to my chest, and machines monitor my heart rate and blood pressure. Vaseline has been smeared on my eyelids and eyelashes, clouding my vision, and I feel like I am straining to see from under the cover of a heavy, wet blanket. The white stockings the surgical team had given me are pulled up to my knees and constrict the circulation in my lower limbs.
I feel small—shriveled up in the bed like a green-gray alien being prodded by U.S. government doctors and scientists on an operating table in Roswell or Los Alamos, New Mexico. A scar runs the entire length of my head, from the tip of my right ear to the tip of my left ear. I tap a slight dent in my skull (produced by a right frontal craniotomy during surgery), about the width of two fingers, just above my forehead on the right side.
The stitches itch, and I reach up to feel the thick, black threads. I wonder if I resemble a twisted version of the Mr. Met mascot.
5.
But I feel relieved because I have awakened from the operation, and my brain function remains intact. Some doctors lean over my bed and ask me a series of questions: Do I know my name, the current year, the president of the U.S., and the name of the city I am in? I answer the questions correctly, and when instructed, I squeeze their fingers, wiggle my toes, puff my cheeks, stick out my tongue, and follow a penlight with my eyes.
My senses function properly, as I can see, hear, speak, and smell. I can form thoughts, and the trauma of the surgery has not altered my mental ability or effaced my memory.
My mother, father, sister, and Aunt Teresa huddle around my bed, their faces beaming like those of Dorothy’s relatives in the scene when she wakes up from the dream at the end of The Wizard of Oz.
“Hey, buddy,” my dad says.
My mom leans over the bed rail, kisses my face and eyelids, and says, “You did great, honey, just great.”
“Yeah, Dr. B. said he got most of it,” Dad says.
“Was it big?” I ask.
My mom holds up her right thumb, indicating the size of the tumor. “It was about the size of a thumb,” she says. She caresses my face and adds, “Dr. B. said there’s a little bit left over, but we don’t need to worry about that now.”
“OK,” I say, closing my eyes and returning to sleep.
High school graduation in 1987.
6.
I wake up on the first night with a raging thirst in my parched throat. I feel like I have been deprived of water for days. But because the doctors are concerned about swelling in the brain, they load me with corticosteroids and restrict my fluid intake. My face is swollen, and I feel bloated from the steroids; I am not allowed to drink water, but I am permitted to suck on ice chips.
However, late in the evening, with the lights dimmed on the floor after visiting hours have ended, I turn my head, look around, and notice a sink in the corner, only a few feet away from my bed.
Somehow, despite being woozy, I lower the bed rail, swing my legs out to the side, and climb out of bed. I try to be quiet as I wheel my IV stand toward the small, stainless-steel sink. I turn on the foot pedal faucet, cup my hands, and gulp the water like it’s rushing in an icy mountain river.
The cold liquid pours down my throat and gives me immediate relief. I want to stay here and drink more water, but a man—a male nurse or an orderly—races toward me and pulls me away from the sink.
“What are you doing?” he yells. “You just had brain surgery.”
He then escorts me back to bed, swings my legs over, covers me with the blankets, and lifts the bed rail.
“Now, don’t get up again,” he says. “What do you wanna do, crack your head open and screw up the work those surgeons did?”
And now tucked back into bed, I resume sleeping, drifting off until the next wave of pain hits, and I press the call button to request another dose of Demerol.
##
Recalling these past forty years, I run a tally of my surgeries at Upstate. The number stands at six—counting the initial surgery in 1984 and the subsequent operations to remove tumor regrowth in 1988, 2011, 2012 (Gamma Knife), 2020 (Gamma Knife), and 2023.
I have some double vision when looking at things up close and to my extreme right (right sixth nerve palsy), and I must be hyper-vigilant in the management of my care to treat my hypopituitarism. But except for my corticosteroid-induced osteoporosis and rheumatoid arthritis (unrelated to the tumor), I am a healthy, middle-aged man.
My next MRI is scheduled for Dec. 18. And with the stubborn resilience of craniopharyngiomas, I know more surgeries (or radiation treatments) loom in the future. But I face each day with gratitude, recognizing how lucky I am to have survived the scalpel on multiple occasions. I also don’t look beyond each six-month window of time between MRIs. Once my current neurosurgeon orders the next MRI, I go about my life without thinking about the tumor still lurking in my head.
Late high school or early college years.
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And because of the significance of the number 40 on this anniversary date, I’ll leave you with U2 playing “40” live at Red Rocks Amphitheatre in Colorado in 1983.
This essay was published in the Spring 2024 issue of The Awakenings Review. I’m grateful to editor Robert Lundin for giving me permission to publish the essay on my blog.
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In the pediatric surgery waiting room, my wife, Pam, and I sit on a couch, watching a television screen as Facebook CEO Mark Zuckerberg testifies before a House subcommittee about the data-sharing scandal involving Cambridge Analytica. It’s April 2018, and we’ve been here all morning since bringing our two-year-old son, Colin, to the hospital for an anesthesia-induced auditory brainstem response (ABR) test.
The audiologist steps into the room and shuffles toward us with his eyes cast downward. He’s short and balding with grayish-brown hair on the sides of his head. After he directs us to a more private area, he says in a low voice, “He’s doing fine. The test went well. It’s good news from my perspective, but maybe bad news for you. His hearing is fine, perfectly normal.”
“So what does that mean?” I say.
“It means his hearing isn’t the cause of his delayed speech.”
“I knew it. I knew it,” Pam says.
We would receive the official diagnosis of autism spectrum disorder (ASD) a few months later. And as Colin has grown, during moments when he refuses to eat, take a bath, or leave the house, or when he throws tantrums—his face bright red, his arms flapping, and his voice emitting high-pitched screams that reverberate off the walls and ceiling—I have repeated two mantras in my head: “Embrace the Futility” and its softer sibling, “Accept the Inevitable.”
Colin’s room. He loves to line up his toys in patterns,
I use these twin sayings as coping mechanisms to brook the vagaries and hardships of life.
I take no credit for inventing the verbiage of Embrace the Futility. One of my co-workers at a broadcast news wire service in Arizona shouted the phrase several years ago when we were understaffed on the overnight shift and getting inundated with news summaries and audio files sent to us from multiple markets across the country.
Embrace the Futility sounds like a negative concept, but it is a positive and freeing principle (at least for me).
It guides my behavior with one central dictum: I am not in control. The world is a dealer at a Las Vegas blackjack table, and the house always wins. My mental approach is, “Expect the worst and be pleased when it doesn’t turn out that way.”
At an early age, our parents teach us that we will live for a short time and then die. The rules of the game are rigged. We know the score at the outset, and the contest ends in our defeat.
Embrace the Futility and Accept the Inevitable give me the freedom to let go of things I am powerless to control. As a result, I reconcile myself to an existence dictated by failure, sickness, and eventual death.
This is a personal philosophy based on my lived experience; it may not work for everyone. But Embrace the Futility and Accept the Inevitable have helped me to endure the inexorable rough patches in life.
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I am consumed with pity for my son, knowing his autism—his diminished ability to communicate verbally—puts him out of alignment with the rest of the world. In this case, love proves impotent to effect change or prevent the hurt he will absorb as he grows.
Colin sitting in the stands on the first-base line.
I understand I am professing ableism. I recognize Colin’s disability should not be viewed as a problem that needs to be fixed. But as a parent, I know his autism dictates his future, making his life more difficult. Colin may never lead an independent life. He may never enjoy what neurotypical kids experience—playing organized sports, going to college, falling in love, and working full-time.
I can’t wish away his autism or intervene to make him “normal.”
I could lament the diagnosis. I could resist—to metaphorically bang my head against a cinder block wall and expect to make an opening. Instead, I acknowledge that I cannot “cure” Colin, and I accept him unconditionally. And amid the many challenges of raising an autistic child, Pam and I savor ordinary moments with Colin, relishing his squeals of laughter and his blithesome presence as he jumps around our living room.
Pam and Colin.
But Embrace the Futility and Accept the Inevitable have universal applications. Your car breaks down. You file for divorce. Bankruptcy, fraud, cancer, a broken femur, or a flooded basement—sure, bring it on.
Embrace the Futility and Accept the Inevitable can help anyone reframe the unavoidable “suckiness” of life. You don’t ignore the mess, but you admit you can’t control it. And it’s OK to let go—to reconcile yourself to what the universe throws at you.
Since age fifteen, I’ve had multiple surgeries and radiation treatments for a slow-growth, benign tumor at the base of the brain, near the pituitary gland. The latest surgical intervention came in July 2023, when a neurosurgeon and an ears, nose, and throat specialist teamed up, taking a transsphenoidal approach (through the nose) to extract tumor remnants that had affected my vision. Even as I write these words, I know the craniopharyngioma will eventually expand in my head and another date on the operating table looms in my future.
I was also diagnosed with rheumatoid arthritis in 2017. The disease has altered my digestion and lung function while leaving me with bent, aching fingers.
And while I do my share of complaining about these medical conditions, I also Embrace the Futility of my body breaking down, since the decline is inescapable.
My late father, Francis Sr., offered the best example of Accepting the Inevitable.
When he was diagnosed with lung cancer in 2007, an oncologist gave him the option of starting chemotherapy, but the doctor stressed the dismal odds of the treatment elongating my father’s life. My dad curled his bottom lip and said, “Why bother? What’s the point?”
Dad, side angle. Photo by Francis DiClemente.
He rejected tubes, injections, and trips to the hospital. He endured his fate with stoicism, making the best of his last six months on earth, placing bets at OTB (Off-Track Betting), racking up credit card debt (which would be wiped out with his death), and eating sweets he had eschewed previously—Klondike bars and Little Debbie snacks—before dying at home under hospice care.
So now, when circumstances beyond my control arise, I follow my father’s model. I submit, acquiesce, and capitulate—assenting myself to a fate I cannot sway. And this allows me to move forward without resistance to the vicissitudes of life.
I’ve written about this in many entries over the years, but I can’t let the Dec. 12th date pass without mentioning my gratitude for still being here. Today marks my “tumorversary.” Thirty-nine years ago today, on Dec. 12, 1984, surgeons at SUNY Upstate Medical Center in Syracuse, New York (now named Upstate University Hospital), removed a large craniopharyngioma that had engulfed my pituitary gland, leading to stunted growth and delayed puberty in my teenage years, as well as lifelong hypopituitarism.
In my last blog post, I wrote about my follow-up appointment with my neurosurgeon after my summer operation—my sixth brain surgery. But who’s counting?
I never post pictures of myself, but I want to share this photo taken by my wife in our backyard. Eight days have passed since my brain surgery. I’m still a little wobbly, but I am getting stronger every day and trying not to strain myself.
Backyard photo. Credit: Pamela DiClemente.
I am also grateful for being able to soak up the sunshine—standing and breathing on my own. And I wish speedy recoveries for other people enduring health crises.
Thank you for your prayers and kind thoughts.
Francis DiClemente 