Tag Archives: hypopituitarism

Stunted: A Memoir of Delayed Manhood

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.”

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Forty Years Later

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.

##

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.

 

 

 

 

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Embrace the Futility

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.

##

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.

##

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.

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39 Years Later

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?

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Recovery Update

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.

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Tumor Talk

I am undergoing another brain surgery on Monday morning. This marks the fourth time since my craniopharyngioma (benign brain tumor on the pituitary gland) first appeared when I was fifteen years old.

Image by the National Cancer Institute.

My last blast of Gamma Knife radiation in 2020 kept the tumor away, but subsequent regrowth began affecting my vision in the past two years. Another round of radiation could not be performed because the tumor sits only a millimeter away from the optic nerve. My radiation oncologist gave me the grim news that radiation presented a twenty-five percent risk of blindness.

So a neurosurgeon and an ears, nose, and throat surgeon at Upstate will team up for a transsphenoidal approach—meaning they would go through the nose to access the tumor. I had the same surgery in 2011, followed by a rough recovery where I stayed locked in my room for about a month, suffering from excruciating headaches. I have added concerns now because in 2011 I was on my own; now I have my wife and son to think about.

Image by the National Cancer Institute.

Anyway, I want to present a piece of experimental writing inspired by my tumor. I think this falls under the essay category, but it could also be considered fiction.

Tumor Talk: A Conversation with My Craniopharyngioma

“I’m back, baby!”

I heard those words in my head after my radiation oncologist discussed the results of my latest MRI. Dr. L. said my craniopharyngioma—a benign, slow-growth tumor at the base of the brain near the pituitary gland—had grown over the last two years, causing my recent double vision.

Dr. L. said the proximity of the neoplasm to the optic nerve and blood vessels meant radiation was no longer an option. I would need surgery.

“You must be pretty proud of yourself, Fred,” I said to my tumor friend resting inside my head.

“Oh, come on, man, don’t be like that,” Fred said. “You know this was inevitable. Us craniopharyngiomas are like the cockroaches of the tumor world. You know no matter what you do, we always come back. You think that weak-ass radiation was gonna work on me?”

Yes, my tumor has a name. Since he’s been residing inside me for so long, I figured we should at least be on a first-name basis.

And Fred was right. There’s no denying his Terminator instincts for coming back. He’s like Buster Keaton in The General. He keeps barreling down the tracks no matter what you do to him.

Fred first appeared in 1984 as a large tumor engulfing my pituitary gland. His removal led to hypopituitarism and diabetes insipidus (a disease affecting water and sodium balance).

Despite surgeries in 1984, 1988, and 2011, plus two blasts of Gamma Knife radiation, Fred continued to aggregate the tumor vestiges, scooping up the fragments and wrangling them into a well-formed regiment. I gotta give him credit for its spunk and resiliency.

But after leaving the medical office and waiting at the bus stop, I wanted to set some ground rules with Fred, to see if I could talk him down or at least minimize his impact.

“Why are you doing this to me again? Life has been pretty stable with my family. Why do you have to make trouble for us now?”

“Come on, man, get real. Don’t give me those bullshit questions. Why anything? Why do you breathe or drink water? Why does a horse gallop, a deer prance, a cat meow, or a goat bleat? Do I need to go on? I’m a fucking brain tumor.”

“So what if you’re a tumor? Can’t you control yourself? Can’t you stop growing?”

“Now you just sound naïve. I can’t be something other than what I am. And I have a clear objective. As a tumor, my job is to expand and invade. That’s it. That’s why I’m here on this planet.”

What could I say? I couldn’t offer any retort.

“Look, don’t be so glum. You’re in good hands with your doctors, and our history shows we both come out alive.”

“Yeah, but I wish you’d agree to leave.”

“Well if it’s any consolation, I do like where I live. You’re a good host. Don’t get me wrong, I’d prefer to be inside the head of some brilliant mathematician or a swimsuit model reclining on a beach. No offense. Look, you’re not a bad guy. But let’s not get carried away. You’re no fucking Einstein or Dave Chappelle. And frankly, I get a little bored with your prosaic thoughts.”

“Tell me how you really feel.”

“Oh come on, man. I’m just busting your balls a little bit, trying to cheer you up. Which reminds me—I thought of a theme song for our relationship. Come on, sing it with me:

“In your head, in your head,
Zombie, zombie, zombie-ie-ie-ie …”

“Very funny.”

“Come on, man, don’t be like that. We need to learn to live together. Look, I haven’t caused irreparable damage. Your brain functions, memory, and language processing are all intact.”

“I suppose I should thank you for that. But with any luck, the neurosurgeon will go up through the nose and pluck you out.”

“Oh, why so adversarial? We’re just talking here.”

“You have your objective. And I have mine. You’re a squatter. A nuisance tenant who needs to be evicted.”

“Yeah, good luck. I adhere to things. You can’t just kick me out. I stick around. Been doing it for more than thirty-five years.

“Yes, you’re one tough foe.”

“But why do you have to think of me like that?”

“What do you mean?”

“Maybe I’m more friend than foe?”

“I don’t buy it.”

“Just hear me out. You wouldn’t be the man you are today if it weren’t for me.”

“How do you figure?”

“You’re pretty driven, ambitious, and disciplined, right?”

“Yeah, I suppose.”

“Well, if it weren’t for me, you wouldn’t have had to overcome those endocrine challenges—being the shortest guy in your class. I may have stunted your growth, but I gave you determination—a fire in the belly.”

“You know, I have to admit, I think you have a point. From the moment you came along, I felt like you were a ticking time bomb inside my head, and I had to strive to achieve something before you exploded and shattered my skull.”

“But, lucky for you, I’m not a bomb. And I’m not vicious, pernicious fucking glioblastoma. I’m just an aggravating nuisance, a little hangnail or a sliver under the skin. Think of me as a dented fender or a toilet that keeps running.”

“Well, I guess I should say, ‘thank you’ for that.”

“Don’t mention it.”

“Can we at least come to some agreement? Can you just stop growing and stay put for a while, until I have this surgery?”

“I don’t have that kind of control, kid. You give me too much credit. I don’t know where I’m going. I just keep moving.”

“Well listen, after Dr. H. does his transsphenoidal resection work, I’ll let you come back slowly, over the next ten years.”

“I hate to break it to you, but I don’t need your permission to inhabit some space inside your head. And let’s face it—we’re gonna be together for a long, long time. We’ll be two old, shriveled geezers playing shuffleboard in Clearwater. So let’s stay friends.”

I laughed. “I guess you’re right. I don’t know what else to say. See you later, Fred.”

“See you in the operating room, kid.”

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Tumorversary 2022

Today marks the thirty-eighth anniversary of my first brain surgery. As I’ve written about before, on Dec. 12, 1984, surgeons at SUNY Upstate Medical Center (now named Upstate University Hospital) in Syracuse, New York, 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.

The tumor has returned over the years, requiring follow-up surgeries and Gamma Knife radiation. It’s something I’ve learned to live with, and I’m grateful my condition is manageable.

Here’s a poem reminiscent of that initial post-surgical time period:

Craniopharyngioma (Youthful Diary Entry)

Craniopharyngioma gave me
an excuse for being unattractive.
I had a problem inside my head.
It wasn’t my fault
I stood four foot eight inches tall
and looked like I was
twelve years old instead of eighteen—
and then nineteen
instead of twenty-four.
I couldn’t be blamed for
my sans testosterone body
straddling the line
between male and female.

The brain tumor
spurred questions
about my appearance,
aroused ridicule
and provoked sympathy.
I heard voices whispering:
“Guess how old that guy is?”
And, “Is that a dude or a chick?”

And while I waited for my
body to mature, to fall in line
and to achieve normal progression,
I remember wishing the surgeons
had left the scalpel
inside my skull
before they closed me up,
knitting the stitches
from ear to ear.

I prayed the scalpel
would twist and twirl
while I slept at night—
carving my brain
like a jack-o’-lantern—
splitting the left and right
hemispheres,
and effacing the memory
of my existence.

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Featured Poets Blog

I just wanted to share that I have a couple of new poems published on Osamase Ekhator’s Featured Poets blog. You can find out more about Osamase Ekhator on his personal website. And here’s a direct link to the Featured Poets page.

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Jacket with a Past

I came home from grocery shopping on a recent Friday night and changed into black shorts and a black T-shirt to relax for the evening. As a gag, I pulled an olive green, double-breasted blazer from the back of my closet, slipped it on and stepped into the living room; I then waited for my wife—who was seated on the couch with our three-year-old son—to look up and notice me. When she did, she howled with laughter and said, “No, no.”

“What, no good?” I asked.

“It’s so out of style,” she said. The shoulder pads are so over the top.”

Of course, I knew she was right.

And one side note: I believe I am colorblind, so while I think the jacket is olive green, it may actually be beige or light brown.

The 1980s blazer is a cross between something Sonny Crockett would have worn on Miami Vice or one of the suit jackets David Byrne of The Talking Heads could have donned while performing on stage or appearing in an MTV video.

But even though the garment is dated, I thought I looked decent modeling it, since I’m actually leaner now than I was when I bought the jacket in the late 1980s at Sangertown Square mall in New Hartford, New York (if my memory is correct). It came with me to Washington, DC for graduate film school and then to my career stops in journalism—to Venice, Florida; Toledo, Ohio; and Phoenix, Arizona.

After returning to central New York in 2006, I left the jacket in my parents’ home in Rome, until I retrieved it a few years ago and buried it in my bedroom closet in Syracuse. I decided not to discard the blazer because I thought I would find the right occasion to wear it; but I never did, as I knew the jacket’s time had passed, as had mine.

But the story does not end there because the jacket has a history. After breaking it out and seeing it encircling my frame, it reminded me of the way I felt about myself in the late 1980s and early 1990s, when I was riddled with self-hatred over my chubby, underdeveloped and feminine appearance (caused in part by my hypopituitarism). No jacket back then would have made me feel good about myself when looking in the mirror.

I’d like to say I’ve moved past the low self-esteem that hounded me in my youth. But the truth is I still struggle with it daily. Professional success does not resolve it; neither does marriage nor being a decent parent. All of us must live with the non-Instagram versions of ourselves—the real, unvarnished truth we face every day—the wrapping of flesh that houses the spirit pulsating inside. And so the jacket is more than piece of clothing to me. It’s part of my past, a slice of my story I wanted to share.

I donated the blazer to the Salvation Army store, and I hope that despite its out-of-date style, someone else was able to get some use out of it.

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Hitting the 50 Mark

As I celebrate my 50th birthday today, I want to offer some brief reflections on hitting the half-century mark.

Most importantly, I must express gratitude for surviving this long. Since 1984 I have endured four surgeries to remove a craniopharyngioma (pituitary tumor) and its remnants, as well as managing the hypopituitarism that followed. In subsequent years, the diseases of osteoporosis and rheumatoid arthritis have been added to my medical history. But my diminishing health has taught me some important lessons. Here they are:

  1. If not this, it would be something else. Yes, I have some challenges, but I have not been given a stage four cancer diagnosis, and I do not suffer another fatal illness. And for that I am thankful.
  2. I must accept the limitations imposed on me by these diseases, keeping the attitude of always trying to do my best and reevaluating my goals and what I am able to accomplish.
  3. The importance of cultivating an attitude of gratitude. I am thankful for my family, friends and full-time employment status, but I also continually remind myself to be grateful for the things we often take for granted. For me these are: standing upright, breathing normally, having brain function (although somewhat impaired at times), having five working senses and working limbs.

So there’s only one more thought on turning 50: I don’t know how many more years I have left on this planet, but I will try to make each day memorable, not in achievement but in the ways I connect with others, spread compassion and leave a positive impact wherever I tread.

 

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