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 30^th 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.”

41st Tumorversary

Today marks the forty-first anniversary of my first brain surgery. As I’ve written about before, on Dec. 12, 1984, when I was fifteen years old and a sophomore in high school, 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. Since then, I’ve had four additional surgeries and two Gamma Knife radiosurgery treatments at Upstate.

Posing with my parents prior to my surgery in 1984.

Prior to the initial surgery, in the fall of 1984, a scan of my head had revealed a cloudy mass in the sella region at the base of the skull, and the results of a follow-up CT scan with radiation contrast came a few weeks later.

I received the news about the brain tumor diagnosis from my father when he picked me up from wrestling practice on a cold November night. This essay describes that encounter.

Craniopharyngioma

After I put on my black wool pea coat, pulled a knit hat down around my ears, and slung my book bag over my shoulders, I pushed open the back door of the gym and walked outside to meet my father, who had parked behind the high school.

The cold air hit my face and stung my gloveless hands as I strode toward the car; a floodlight cast a large net of bright, white light on the pavement. Dad drove up, and I got in.

He left the car idling, and as I slid into the passenger seat and adjusted myself, he leaned over and kissed me on the cheek, his tan winter coat brushing against the steering wheel. I felt a trace of his beard stubble against my skin, and I could smell a faint odor of Aqua Velva or Brut combined with cigarette smoke. The heater hummed, and he lowered the blast of air and turned and looked at me. I wondered why we weren’t moving yet. He wasn’t crying, but he appeared on the verge of spilling emotions.

“What’s the matter, Dad?” I asked.

“Upstate called your mother today,” he said. He switched on the overhead light, reached into his jacket pocket, and pulled out a torn piece of paper. “Here,” he said, handing me the slip of paper, “this is what they think you have. I wrote it down, but I don’t think I spelled it right.”

In a slashing style in faint, blue ink, my father had scribbled a misspelling of the word craniopharyngioma. His voice cracked as he said, “It’s cranio-phah-reng . . . something like that . . . oh, I don’t know. It’s some kind of brain tumor.”

I looked at the paper as my father let out a sigh. He shook his head and said, “I prayed to God when you were born that this wouldn’t happen to you, that you wouldn’t have to go through the same thing I did.” His words referred to his health crisis as a teenager, one that caused small stature and delayed puberty and led to ridicule by his classmates.

Francis DiClemente Sr. was born with a hole in his heart, a ventricular septal defect. On June 12, 1959, when he was sixteen years old, pioneering cardiac surgeon C. Walton Lillehei performed open-heart surgery on him at the University of Minnesota Hospital, successfully repairing the defect.

The heart problem disrupted Dad’s high school years, and he faced a long recovery; but he rebounded after the surgery, lifting weights to become stronger and adding muscle to his thin frame. He grew to his final adult height, graduated high school from St. Aloysius Academy in Rome, and went to work at the city’s Sears Roebuck store.

After sharing the information with me, he pressed his lips together and shook his head again, and he seemed locked in position in the driver’s seat, unable to contend with the news, incapable of going through the motions of driving away. We clenched hands, and I said, “It’s OK, Dad. Don’t worry. But what do we do now? What’s next?”

“You have to go back there for more tests. You may need surgery.”

“All right,” I said. “It’s OK.”

“I hope so,” he said. “All we can do is pray.”

He switched off the overhead light, put the car in drive, and drove out of the parking lot. We grew silent as we passed the naked trees lining Pine Street in our city of Rome, New York.. We crossed the intersection at James Street and made our way toward Black River Boulevard.

While my father was anxious and crestfallen, I felt elated as I gripped my book bag in the passenger seat. The CT scan with contrast had confirmed my suspicions, indicating a grave medical condition was responsible for my growth failure at age fifteen, offering a reason why my body had not changed, why I had not progressed through puberty, and why I remained so different from the other boys my age. I still considered myself a physical anomaly, but the tumor proved it wasn’t my fault.

I looked down at the piece of paper again and studied the word. Craniopharyngioma. I tried to sound it out in my head while my dad steered the vehicle, and I thought the word would twirl off my tongue like poetry if I rolled down the window and yelled it. Craniopharyngioma. Cranio-Phar-Ryng-Ee-Oh-Mah. It reminded me of onomatopoeia, which I had learned about in my tenth-grade English class.

And here are two related poems:

Case History

Stricken with pituitary insufficiency,
I felt my way through
a stage of delayed puberty.
When adolescence took hold for other kids,
I remained like a boy wrapped in toddler’s clothes.

My face looks older now,
and my body has grown.
But I could not escape
the endocrine impact of that cranial intrusion.
For even though benign,
the tissue overtook me,
and in effect, the tumor
scarred my life and altered my future.

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.

Dormant But Not Dead

Two years ago today, I underwent my sixth brain surgery at Upstate Medical University Hospital for a recurring benign tumor on my pituitary gland. A neurosurgery and ENT team removed the stubborn craniopharyngioma in a four-hour surgery on July 24, 2023.

Upstate Medical University Hospital (Photo by Francis DiClemente)

I wrote a poem based on the postoperative medical report uploaded to the MyChart portal. I consider this a “reverse redacted poem.” Instead of blacking out words from my source text, I pulled words and phrases from the summary.

Neurosurgery Report

Date of Procedure: July 24, 2023

Endonasal endoscopic
transsphenoidal resection
of tumor
with nasal septal flap.

Preoperative diagnosis:
Recurrent craniopharyngioma
Postoperative: Same

Patient is a 53-year-old male
with a long history
of known craniopharyngioma.
Recurrence of craniopharyngioma
abutting the optic chiasm.
Not a great candidate
for repeat radiosurgery—
not enough margin
between the tumor
and the optic chiasm.

Counseled on the risks
and benefits of endonasal
transsphenoidal resection.
Elected to proceed
despite the risks.

Patient was intubated
by anesthesia.
Positioned supine
with the bed turned 90 degrees.

Endonasal approach
to the sphenoid sinus.
Once the sella was exposed
and the bone drilled down,
we began our resection.
A long handled arachnoid knife
was used to incise the dura.
The tumor was located
mainly on the right side.

We then encountered
thick scar tissue,
which was also incised
in cruciate fashion.

Once both layers of dura
had been opened,
there was immediate egress
of thin viscous brown fluid.
With the endoscope
we could see a
calcified appearing tumor
just in front of our field.

At this point, there was a brisk
CSF (cerebrospinal fluid) leak
from the chiasmatic cistern most likely.
Once we had attempted
to scrape along the floor
of the sella posteriorly and laterally
along the cavernous sinus,
we then turned our attention
to the tumor hanging in front of us.
We used laryngeal biopsy forceps
to coax the tumor out.

At this point, the tumor
seemed fairly stuck and plastered
to the arachnoid superiorly,
and thus we resected the
remaining tumor in front of us
in piecemeal fashion.

Given the brisk CFS leak,
our ENT colleagues then turned to
the right-sided nasal septal flap.
The ENT repaired the CSF leak.
Packing Surgical and NasoPore dressing
placed by the ENT surgeons.
This concluded our procedure.
The drapes were then removed.
The patient was returned to the stretcher.
He was successfully extubated
by anesthesia and transported
to PACU (Post Anesthesia Care Unit)
in stable condition.

Now, two years later, I am still living with a brain tumor. My last MRI in December 2024 revealed:

“The lesion measures 14 mm x 13 mm (TV by AP; Transverse by Anteroposterior), unchanged compared to prior scan dated 5/17/2024, allowing difference in technique and slice selection. The superior aspect of the mass abuts supraclinoid ICA, which remains patent. The right prechiasmatic optic nerve demonstrates mild atrophy but remains unchanged.”

My next MRI is scheduled for September. I suffer some mild headaches and have double vision when looking at a computer screen without my prism prescription glasses or gazing to the extreme right. But otherwise, the tumor is not affecting my health.

And I know what Dr. H. will say when he reads the MRI report in September. He’ll say, “Your scan looks good. It hasn’t grown. Let’s leave it alone and get another MRI in six months.”

This wait-and-see approach works well for me. But at the same time, I can never get the tumor out of my head—literally and figuratively.

And although Dr. H. is the surgeon and I respect his medical advice, his Pollyanna outlook ruffles me.

That’s because Dr. H. isn’t troubled by a repetition of sneezes that I fear could dislodge the tumor from its nook and cause it to invade healthy brain tissue. Dr. H. doesn’t worry that eating an entrée of fish and chips will add protein and fat to the tumor cells and make the mass larger. He’s not worried that the tumor will expand and start pressing against the optic nerve.

Craniopharyngiomas consistently grow back; that’s their nature. Having this dormant beast taking up real estate inside my skull feels like having Godzilla asleep in your cellar. You know he’ll wake up eventually. And then what? So how can you sit at the kitchen table and blithely enjoy a quiet dinner when you know the predator lurks beneath your feet?

At the same time, life and death could trade places on any given day. I’ve lost two cousins younger than sixty years old in the past six months (Derek DeCosty and Damon DeCosty), and I know tomorrow is not guaranteed. I am also very fortunate not to have a malignant tumor or a fatal disease.

And since I have no alternative, I live with the tumor as best as I can and try to forget it’s still there. Meanwhile, the tumor remains in the act of waiting—waiting to decide what it will become, waiting to find its path, waiting to strike. The neoplasm’s presence inside my head troubles me if I allow the image of the fluid-wrapped mass to provoke my worst fears. But for now, I try not to disturb the sleeping beast.

Book Giveaway

This week marks two years since my last poetry collection, The Truth I Must Invent, was released. The book is available from the publisher, Poets Choice. You can also find it on Bookshop and a Kindle version on Amazon.

The Truth I Must Invent is a collection of narrative and philosophical poems written in free-verse style. The book explores the themes of self, identity, loneliness, memory, existence, family, parenthood, disability, gratitude, and compassion.

I am giving away three print copies of the book, which I will mail to anyone in the U.S. You can use the contact form or email me directly at the gmail address listed in the form.

The Truth I Must Invent book cover.

Selections from the collection:

Man Inside Nighthawks

I assume I was nothing
before I found myself sitting here,
staring straight ahead.

I can’t move my head.
I can’t smoke the cigarette
pressed between the fingers
of my right hand or drink the cup
of coffee resting on top of the counter.
I can’t touch the woman seated next to me
or talk to the other men in the diner.

This is my life: suspended in warm, yellow light,
trapped in a soundless environment—
no water running, no fan whirring, or grill sizzling.
No sirens or street sounds beyond the glass.

Time drags on with no discernible shift—
no transition to morning.
Here, night never ends.

Yet my mind still works.
In fact, it never stops.
I’m cursed with thoughts that run continuously.

Why am I here?
And where exactly is here?
What purpose do I serve?

Do I have a past? Did I live elsewhere,
before I became frozen in this moment—
captured and imprisoned for eternity?

If only I could talk.
If only I could open my lips and make a sound.
Then I could scream for help.
But who would hear my voice?

If only I could stand up
and walk around,
stretch my legs and
stare outside the window.

But since I can’t move,
the composition will remain unaltered,
as I will stay locked in place
inside this painting,
hanging on a gallery wall.

Looking Through Spindles

I climb out of bed and clutch
the white balusters at the top of the stairs
as harsh words fly behind walls
too thin to hold my parents’ rage.

My sister creeps out of her room,
shrugs her shoulders,
and moves toward me in the hallway,
passing the door to the master bedroom.
She sits down next to me
and whispers, “What happened now?”
“I don’t know,” I say.
And we listen for clues, trying to determine
the cause of the latest fight.

Did Dad come to bed drunk
and make advances on our mother?
Did she recoil or lash out, scratching his eyes?
But we hear no violent action
on the other side of the white door—
only voices laced with acrimony.
And we remain seated on the stairs,
exhausted but unable to fall back asleep.

Zooming out, I see those siblings
in a Polaroid image, sealed under a plastic sheet
in a leather-bound photo album.
And as the adult looking back,
breaking the fourth wall,
I wonder why this memory pricks my brain
when so many others would illuminate my parents’
kindness, decency, and exemplary work ethic.
Why, when I could have chosen from
a myriad of positive scenarios,
does this one seize my attention,
demanding to be chronicled?

My mother and father are both dead
and can’t defend their actions.
And I feel riddled with guilt
for tarnishing their memories.
I also understand that the truth
doesn’t always tell the full story.
My conscience obligates me to explain that
while Mom and Dad weren’t perfect,
they loved us and endured sacrifices
to make our lives a little better.
And while that’s a weak way to end a poem,
the wider perspective allows me to
forgive my mother and father for being human—
for being real people and not just my parents.

Craniopharyngioma (Youthful Diary Entry)

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?”

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.

Mattress Moment

You don’t get to cry
“No Fair”
Mr. Hyman Roth.

This is the life
you have chosen.

You don’t get to pine
for your salad days,
whatever the fuck that means.

You don’t get to
flip over the mattress
on the bed you’ve made.

The Wanting is the Hardest Part

Tom Petty was wrong.
The waiting isn’t the hardest part.
The wanting is the hardest part.

Wanting fucks everything up—
wanting a better job, a better marriage,
a better house, a better life.
That seed of desire fucks with your head,
makes you think you can be something you’re not.

What if I discarded desire? What if stopped wanting?
What if I no longer sought a better life?
Can I let go of that fantasy
and accept who I am right now,
without seeking a better version of myself—
the idealized me I hold inside my head?

Resolution

You must
Live the life
You have

And not
The one
You want.

Witness

I look up as a group of birds
circles buildings in downtown Syracuse.
I resist the urge to pull out my cellphone
and snap a picture for Instagram.

Instead, I hold my gaze skyward,
letting the wind swirl around my face
and the rain patter my forehead,
as the birds duck in unison
behind a limestone structure—
the moment preserved nowhere except in my mind.

No pictures retained or sound recorded.
No trace of the birds in digital form.
And I think that’s the point, that’s life—
a collection of these impromptu glimpses of existence,
built into a collage, a kaleidoscope of images
demanding attention when presented.

Crying at Bedtime

Nothing prepares a parent
for the tantrums of an autistic child.
There’s no well of patience to draw from.
You adapt. You divert. You distract.
You do whatever it takes to calm the child down—
until you earn that blessed moment of peace,
when his eyelids drop and he drifts off to sleep,
his small body folded in the cradle of your arms.

Fingers in Hair

I run my fingers through
my son’s tangled mop of brown hair
as he lies next to me in bed.
It’s 4:30 a.m. and we can’t fall asleep.

He waves his hands in front of his eyes,
making stimming motions,
and I imagine his head slamming
against the windshield,
a spiderweb crack forming
in the sheet of glass and
blood pouring from
an opening in his skull.

I press my hand to his head
to try to stop the bleeding,
but the crimson liquid
slips through my fingers
and stains the carpet
and fabric seat covers.

I am reminded of a
Gospel passage (Luke 12:7 NIV):
“Indeed, the very hairs
of your head are all numbered.”

I hold some of my son’s hairs
in my hand and realize
I cannot prevent a
car accident, fall, gunshot wound,
or disease from killing my son.
I can’t prolong or preserve his life.
I can only love him while he still lives.

His hands whip in front of his face,
and he prattles phrases
only he understands.
I bury my fingers deeper
into the mound of his hair and whisper,
“Come on now, sleepy time, Colin.”

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

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.

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.

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.

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.

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.

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.

365 Days Later

One year ago today, a neurosurgery and ENT team at Upstate University Hospital took a nasal approach to remove the remnants of a craniopharyngioma (a benign tumor on the pituitary gland). It marked my sixth brain surgery since age 15.

I have fully recovered from the surgery, resuming all activities, although I still suffer occasional bloody noses and have peripheral double vision (which is likely permanent).

Photo of me last summer, after my surgery.

Vestiges of the tumor—what my neurosurgeon calls “membranes and scar tissue” still reside inside my head, as outlined in my latest MRI report:

FINDINGS:

“. . . In the right paramedian aspect of the surgical bed in the sellar/suprasellar region again seen is mass with heterogeneous enhancement which measures approximately 1.2 x 1.4 cm by my measurements.”

For now, the mass “remains grossly unchanged,” but the nature of craniopharyngiomas means the tumor will likely grow back to a point where another surgery or radiation will be required.

However, my medical condition is not the subject of this post. I just needed a brief introduction with a reference to the anniversary of my surgery.

Instead, I want to share some musical selections I listened to in the days and weeks following my surgery last summer. These songs aided me, providing succor while I recovered, propped up in bed, unable to sneeze or blow my nose, and moving gingerly around the house.

As I listened to the songs, I reflected on my life, swelling with gratitude for being alive and making gradual progress—supported by my wife, Pamela.

I think the tunes can provide positive affirmation for anyone facing adversity.

“I’m Still Standing” by Elton John

“Winning” by Santana

“Back in the High Life Again” by Steve Winwood

“Better Days” by Bruce Springsteen

More about Bruce later . . .

As someone who grew up in the 1980s, I am mesmerized by the concert footage available on YouTube. It is amazing to think you can see bands performing in 4K (some clips with multicam edits) hours after a show. When I was a kid, I listened to 95X in Syracuse after a concert by the Rolling Stones at the Carrier Dome so I could hear the DJ run down the setlist.

During The Cure’s 2023 North American tour, they played five original songs that I believe will be included in their forthcoming album, Songs of a Lost World. Two of my favorites from the new batch are “Alone” and “Nothing is Forever,” which I listened to repeatedly during my recovery. They put me in a dreamy headspace where I could forget about my health problems.

“Alone” by The Cure

“And Nothing is Forever” by The Cure

I also turned to the Grateful Dead for repeat listening during the late summer of 2023—often clicking on two tracks from the Dead’s famed 1977 concert at Barton Hall at Cornell University.

“Morning Dew” by the Grateful Dead

“Terrapin Station” by the Grateful Dead

And finally, there’s Bruce.

Bruce Springsteen and the E Street Band were initially scheduled to perform at the JMA Wireless Dome in Syracuse in early September 2023, but the show was canceled because of Bruce’s peptic ulcer disease. It was fortunate for me because I would have been in no condition to climb the concrete steps to the upper rafters of the Dome just a few weeks after brain surgery. But I attended the rescheduled show in April 2024, and I’ll leave you with “Backstreets” (which references summer).

“Backstreets” by Bruce Springsteen and the E Street Band

Six-Month Reprieve

I want to share some positive news. I had my follow-up appointment with my neurosurgeon yesterday. Fear gripped me heading into the exam room because the radiologist’s report detailing my latest MRI included this troubling language: “Unchanged heterogeneously enhancing prominence in the right anterolateral suprasellar area, causing mass effect with deformity and right optic tract and proximal portion of the right optic nerve.”

But Dr. H., who is always sanguine, stepped into the room, shook my hand, and sat down, adjusting his glasses and mask, then quickly put me at ease. “We think we got about seventy to eighty percent of the tumor,” he said. He explained the rest—what the MRI report referred to on the right side—was the membrane of the tumor, similar to what’s left over after a balloon bursts. He said he expects the membrane to shrink and form scar tissue.

Although my vision will never go back to the way it was prior to the swelling of the tumor in recent years, I felt relieved when Dr. H. said we can resume a wait-and-see approach, meaning I need no other treatment besides another MRI in six months.

That reassurance was the best present I’ll receive during this Christmas season. Clean, safe, and grateful are the words that hovered in my head when I left the office yesterday. I believe in the power of prayer, especially the petitions made by Aunt Teresa, a Roman Catholic nun in Florida who uses the term “storming heaven” when referring to her supplications.

I am thankful to have endured my latest medical ordeal, but I also know tomorrow could bring a whole new heap of trouble. That’s why I am trying to honor my good fortune by living in the present each day. Of course, this is impossible to do consistently amid the pressures of work and family life.

But I’m trying.

Here are a couple of photos I snapped recently—two visual gifts the universe offered because I was willing to pay attention in the moment.

Snow on Branches 2023. Photo by Francis DiClemente.

Rain Speckled Night. Photo by Francis DiClemente.

Post-Surgery Update

I just wanted to give a quick update on my recovery. More than two weeks have passed since my brain surgery.

I had a follow-up appointment with my ENT surgeon yesterday. For the endoscopic debridement with suction, they stick a probe up your nose and suck out the junk, but I’ll spare you the gory, bloody details.

The last time I had this in-office procedure after the same transsphenoidal surgery in 2011, the surgeon maneuvered the probe too close to my brain stem and I suffered the worst headache of my life.

It felt like a gorilla had grabbed my head and shook my skull like a coconut—side to side and front to back—until my brain swished around and undulated on the waves of cerebral spinal fluid. I almost couldn’t drive myself home afterward.

Hence, I was anticipating a similar experience yesterday. But after Dr. A. performed the procedure, I had only a mild headache throughout the day and into the night.

He also saw no signs of a CSF leak, so I feel incredibly grateful. Although my right peripheral vision loss hasn’t improved yet, I am getting stronger every day and anticipate returning to work before the end of the month.

Thank you very much for the kind words and continued prayers—they are helping me!

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.

Post-Op Notes

Here’s a follow-up to my last post. It’s been less than a week since my surgery, so please excuse my scattered and fragmented thoughts.

A neurosurgery and ENT team at Upstate University Hospital removed a stubborn craniopharyngioma in a four-hour surgery earlier this week.

Upstate University Hospital (Photo by Francis DiClemente)

All test results and surgeons’ notes are posted to the MyChart patient portal, and I love the description of my surgery in ALL CAPS. It reads like poetry to me:

ENDONASAL ENDOSCOPIC TRANSSPHENOIDAL RESECTION OF TUMOR WITH NASAL SEPTAL FLAP

Before surgery, George, one of the neurosurgery residents, stepped into the pre-op room to get me to sign some consent forms. He scared the shit out of me when he ran through the complications—cerebral spinal fluid leak (CSF), bleeding, the need for a blood transfusion, stroke, and death. I thought, maybe I should just get out of bed, put on my clothes, leave the hospital, and let the tumor keep growing until it really messes up my vision.

But I overcame my fear and signed the consent forms. Then I met the anesthesia team, a nurse stuck me with a couple of IVs, and I was off to Fairyland.

I woke up in recovery feeling like only seconds had passed. The pain came in waves—going from zero to eight and centered around my forehead, above the bridge of my nose. I was given fentanyl and oxycodone, while a Foley catheter took care of my urine output.

The neuro team quizzed me: What’s your name? Do you know where you are? What year is it? At first, I said 2013, but then I added ten years to arrive at the correct year.

A parade of surgeons, residents, and interns entered my room in the hospital’s Neuroscience Intensive Care Unit, and someone told me they had encountered a CSF leak, but they patched it with cartilage from my nose. Dr. H., my primary neurosurgeon, said they scooped up most of the craniopharyngioma, but some calcium fragments adhered to structures and had to be left behind.

Craniopharyngioma example.

Lying in that hospital bed—humiliated from lack of privacy, with wires twisted around me, with my gown barely covering my naked body, tumid from the high dosage of corticosteroids—I felt like a wounded animal. After the surgical trauma, I now saw my body as simply an object—a machine that either functions or fails.

And I was now at the mercy of the fine nurses who treated me. I enjoyed my conversations with them, and most were serving as traveling nurses doing rotations at Upstate. And one side note: many of the nurses wore Hoka sneakers.

Because of my persistent headaches, I could not read, watch TV, or even look at my phone. With the wall clock ticking incessantly, I closed my eyes, prayed, and reflected on my life.

This was my sixth surgery if you count two Gamma Knife treatments. And since they didn’t get everything, I wondered, how soon will I be back? Will it be two, four, or ten years? How many surgeries will I need before death claims me?

But when I walked the floor on my second day after surgery, I passed other rooms with patients unresponsive and intubated, and deeper thoughts gave me solace. The words that kept coming to me were nothingness, fragility, and gratitude. I saw myself as a minuscule being with absolutely no control over my body or power to alter my existence. Death could come at any point. This is my fate and everyone’s fate. But I remained alive. I was still here.

And late in the afternoon, two days after surgery, I was discharged. While waiting to get a couple of prescriptions filled at the hospital pharmacy, I was wheeled to the Discharge Hospitality Center. Let me tell you, if you need to be in the hospital, that’s the place to go.

A nurse with blond hair, brown plastic-framed glasses, and wearing orange scrubs, greeted my wife Pam and me, asking us if we wanted a cup of coffee. “Sure,” we said. We enjoyed a cup of coffee and some Lorna Doone cookies while we waited, and I told the nurse that her room was a sanctuary.

Then, while waiting at the circular drive for Pam to pick me up, she asked me about my medical history. When I told her this was my sixth surgery, she expressed concern and said she was sorry I had such problems.

I said, “Yeah, but the thing is, you can’t change it, so you just deal with it. And every time I leave Upstate, I feel lucky that I can just walk and breathe.”

“Right, that’s true,” she said. “That’s a good way to look at it.”

At home, Pam told our autistic son Colin that “Daddy is sick and needs rest.” She put a note on our bedroom door—which has a lock—to remind him not to go inside. With his strong physical presence and his habit of jumping into our bed at night, we need to keep him away so he doesn’t whack me accidentally.

The post-op precautions include no nose blowing and drinking from straws. No straining or lifting more than five pounds. Sneeze with your mouth open and keep your head elevated at least thirty degrees. Pretty simple rules to follow.

I’ll keep you posted as my recovery progresses—slow healing, day by day.

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