Today marks a momentous anniversary in my personal history. As I’ve written about before, on this date, thirty-four years ago, surgeons at SUNY Upstate Medical Center (now Upstate University Hospital) in Syracuse, New York, removed a large craniopharyngioma that had enveloped my pituitary gland, leading to stunted growth and delayed puberty in my early teenage years.
The surgery left me with panhypopituitarism, a deficiency of all of the hormones the pituitary gland produces. The tumor returned twice during the intervening years and I would need follow-up surgeries to wipe away the remnants, along with Gamma Knife radiosurgery in 2012 to keep the neoplasm from coming back. So far, so good; my last MRI showed no traces of my benign nemesis.
My objective with this post is not to elicit sympathy by rehashing my medical past. Instead, I want to pause, reflect on the adversity I’ve faced and express gratitude that I’m still here. If you spend any time in a hospital you discover how quickly life can be snatched away. As I type these words, someone is dying and loved ones are mourning that person’s death. My story could have had a darker, alternate ending.
In looking back on my health crisis, I am thankful for the following.
My vision works—despite my need for progressive lenses and reading glasses. In waking up after the surgery, I could see, and this was not a given since craniopharyngiomas can cause visual disturbances because of their location near the optic nerve.
My brain function remains intact; the wedge of cauliflower in my head is capable of reasoning, performing calculations and doing what it’s intended to do (the majority of the time). And while my adult intelligence and decision-making ability could be open to interpretation, the surgery did not—as I had feared it would—disrupt my mental capacity or alter my cognitive function. When I woke up in my hospital bed, I knew my name, the date and the president of the United States (Ronald Reagan). And I remain thankful to this day because the me I knew as me had not disappeared after the surgeons cut open my skull.
Boy to Man
Although my youthful appearance lingered into my late twenties (a direct result of the delayed puberty caused by the tumor), I am grateful I finally matured with the assistance of injections of synthetic growth hormone and testosterone, which spurred growth and the development of secondary sex characteristics. I have shed the outer skin of a boy, revealing the man I knew resided underneath.
My health has diminished with the subsequent diagnoses of osteoporosis and rheumatoid arthritis, and panhypopituitarism requires constant and vigilant management, e.g. making sure I take the numerous drugs that sustain my life. Even so, today I live a pretty normal existence. The surgery did not provoke a desire to engage in thrill seeking activities. I don’t think you can go full throttle all the time—“living each day as if it’s your last.”
I am content to wake up, blink my eyes and focus on my surroundings, climb out of bed and face each new day with the knowledge of how truly lucky I am.
Gosh it’s been so long since I have posted anything on this blog. I apologize for my dormancy. Life has invaded my writing space, as family and work obligations have kept me preoccupied. I am still pecking away at some long-term creative projects—nothing worth mentioning at the moment, since the completion of my goals seems very far off. So this is just a brief dispatch, a few scattered words to let anyone who may be interested—very few people I’m sure—know that I am still here, I am still active, I am still writing. And since I feel compelled to leave you with something more valuable than my aimless sentences, here is a new photo of my toddler son Colin. Who doesn’t like cute kid pictures?
And here is an excerpt from “Out of the Cradle Endlessly Rocking,” from Walt Whitman’s Leaves of Grass, which I have been reading via the Kindle app on my iPhone. A possible interpretation of the passage eludes me, but I found the words stirring nonetheless.
From your memories sad brother, from the fitful risings and fallings I heard …
From those beginning notes of yearning and love there in the mist,
From the thousand responses of my heart never to cease …
Borne hither, ere all eludes me, hurriedly,
A man, yet by these tears a little boy again,
Throwing myself on the sand, confronting the waves,
I, chanter of pains and joys, uniter of here and hereafter,
Taking all hints to use them, but swiftly leaping beyond them,
A reminiscence sing.
I loathed musical theater when I was growing up. My first exposure to the genre came during my college years in the late 1980s and early ’90s when I attended SummerStage performances at the Capitol Theatre in my hometown of Rome, New York. The productions featured college students from across the region who were majoring in drama or theater studies, and I remember seeing many shows, including Guys and Dolls and South Pacific.
My mother, Carmella, and my stepfather, Bill, would buy me tickets, and in a failed attempt to impress the many young women who attended the performances, I would “dress up” in a black blazer that I had purchased at the Salvation Army store in Rome; yet my appearance and fashion sense drew no positive feedback from the females in the audience.
And while I wanted to go to the Capitol shows because they were summer social events, I was afraid that if I actually liked them, and expressed this appreciation, I would get laughed at or be regarded as effeminate by my friends in our sports-obsessed city.
Once the lights went down and the curtain opened for a show, I would snicker when the actors would break into song in the middle of a conversation. I wanted to stand up and scream, “This is absurd. Why am I the only one laughing here?”
Live musical theater seemed even more preposterous than its cinematic equivalent, which I had been introduced to as a kid while watching my mother’s obsession—the 1965 film The Sound of Music, starring Julie Andrews and Christopher Plummer. And just like with TSOM, I could not suspend my disbelief and accept the characters speaking dialogue one moment and singing the next. Yet I seemed to be the only one dismayed by the experience because the packed houses at the Capitol responded to the final scenes with thunderous applause and standing ovations for the performers.
As we would leave the theater, Mom or Bill would often ask me what I thought about the production. I would say something like, “I thought it was stupid. I just hate how they just start singing.” And my mother would shake her head and say, “Oh you never like anything. I don’t know why we even bother to bring you.”
What I didn’t share with my mom is that at the time, seeing the musicals on the Capitol stage tapped into the dark experience of my maturation from a boy to a man.
I had been diagnosed with a pituitary tumor when I was fifteen. In 1984 neurosurgeons performed a craniotomy to remove the tumor and then swept up the remnants in a follow-up surgery in 1988, after my freshman year at St. John Fisher College in Rochester, New York. Endocrinologists also treated me for panhypopituitarism, as I lacked all of the hormones the pituitary gland normally produces. I was prescribed synthetic human growth hormone and testosterone shots during this period.
So even though I was in college when I attended the SummerStage performances, I still looked like a fourteen-year-old boy who had not passed through puberty. Lacking secondary male characteristics like facial hair, an enlarged Adam’s apple, and a deeper voice, I was sometimes mistaken for a girl, both in person and when talking with strangers or customer service professionals over the phone.
The women at my college were not interested in me romantically, and my low self-esteem grew into rabid self-hatred. I despised my youthful appearance and feminine features, and I became angry over my body’s inability to “catch up” to my chronological age.
So when I went to the theater with Mom and Bill, I resented the easy solutions to problems as presented by the actors. For example, a couple would be on stage bathed in bright amber or violet lights, and they would converse about some family dilemma or obstacle to their romance. Circumstances would appear bleak; and then they would start singing and dancing, and their fate would change and their drama would be resolved.
I couldn’t accept this. Life wasn’t like that. I could not alter my situation or “become normal” through song and dance. My problems stayed with me after I walked out of the theater. And so I hated musicals because they represented an unrealistic portrait of the world.
Of course I was only seeing things through the narrow prism of my personal experience. I wasn’t able to look out, beyond myself, in order to enjoy the artistry of the action on stage.
Years later I underwent a reversal and evolved to love musicals, especially the films featuring Judy Garland, Doris Day, Frank Sinatra, and Gene Kelly. My all-time favorites are The Wizard of Oz (a given), Young at Heart, and Singin’ in the Rain.
I also attended many live musical theater performances. So what changed? How did I come to appreciate the genre I had hated so much in my youth? For one thing I grew up and matured.
But I also had a more practical reason for liking musicals. I began working at Syracuse University in 2007 and from time to time would receive staff discounts for tickets to performances at Syracuse Stage, Central New York’s professional theater. I took advantage of the deals and soon attended many of the plays produced by Syracuse Stage, including the musicals Fiddler on the Roof, Little Women, Godspell, Oklahoma!, and Rent.
I would buy a single ticket, usually close to the stage, orchestra left or right (one of the cheapest seats in the house). And because I paid for the tickets, I convinced myself I would enjoy the shows no matter what, so I wouldn’t feel like I had wasted my money.
Also, even though I was single at the time I started going to the shows, I tried not to focus my thoughts on my bachelor status or become discouraged because I never brought a date with me to the theater (although sometimes I couldn’t help being envious of couples holding hands as the house lights dimmed).
Instead, I turned my attention to the action in front of me. Unlike when I watched the SummerStage shows in Rome, I was able to get out of my head, to look outward instead of inward.
I also surrendered my desire for logic in the plot lines of the plays. In 2008 I began dating my future wife, Pam, a theater actress from the Philippines, and she helped me to suspend my disbelief. She told me, “Just enjoy it. Let yourself go and don’t worry if it doesn’t make sense.”
And in watching a number of musicals unfold before me, I no longer expected a realistic interpretation of the world; it didn’t bother me anymore that the actors behaved irrationally.
I simply allowed the experience to wash over me and marveled at the production values and collaboration involved in bringing the action to life on stage.
I also viewed the plays with a more critical eye and appreciated how musicals combine elements of multiple disciplines. They encompass the verbal, as represented by the words in the script; the visual through the costumes, lighting, and set design; dance and movement through the choreography; and the aural through the music and sound effects. Musical theater appeals to all senses, even including smell when smoke is used in scenes.
And I discovered what my mother had understood years earlier when watching The Sound of Music—that musicals offer escapist entertainment as the viewer lives vicariously through the characters, relating to their struggles.
I remember rooting for the character of Jo March in Syracuse Stage’s 2009 production of Little Women, hoping she would hold on to her independence as she strove to find her way in the world.
I remember being captivated by the song “Astonishing” and its soaring lyrics: “I may be small, but I’ve got giant plans to shine as brightly as the sun … I will be fearless, surrendering modesty and grace.”
And sitting up close for the performances I saw how hard the actors worked—the sweat pouring off their faces and brows and soaking their costumes as they belted out the songs and danced breathlessly on stage. In the dusty glow of the stage lights I also noticed the smiles on their faces and a flicker of light in their eyes. It was clear they loved what they were doing; and that joy translated to the audience.
I remember seeing Hairspray with Pam at Syracuse Stage in December 2014, sitting in row B, left orchestra. And during one of the songs—either “Good Morning Baltimore” or “You Can’t Stop the Beat”—I turned my head around in the same way Audrey Tautou’s character did when she visited the movie theater in the French film Amelie. In the darkness I scanned the crowd seated behind me, gazing at the mixed audience comprised of older couples, young professionals, and college students. And their smiling faces matched the expressions of the actors on stage; the emotional connection was palpable.
And I joined in on the fun. I turned my head around and nodded my head and tapped my foot as I listened to the music and let the show carry me away. I also thought that if my mother were still alive, she would have loved the performance too.
Today I roamed through Bird Library at Syracuse University while searching for some summer reading. I took home five books, including Charlotte’s Web by E.B. White and Bag of Bones by Stephen King. And as I am wont to do, I pulled a book off a shelf at random, flipped it open to the middle and began reading the first text I saw.
The book had a light green cover with the title The 1916 Poets (edited by Desmond Ryan). It contains a selection of poems from Irish authors. My eyes settled on the poem “Litany of Beauty” by Thomas MacDonagh, and I found the words inspiring, particularly the lines:
Beauty of dawn and dew,
Beauty of morning peace
Ever ancient and ever new,
Ever renewed till waking cease …
I wrote this poem recently and it seems fitting for a day dominated by a lake effect blast.
How to Survive Winter in Syracuse
The only way to survive
a Syracuse winter
is to think of the snow
as a friend and not a foe.
When you scrape the ice
crusted on your windshield
and the snow clogs the streets,
when your tires spin,
or your car veers off the road—
regarding the snow
as a friend and not a foe
will help you to endure the season.
Even when the snow lashes
your face as it blows sideways,
or frozen clumps melt inside your boots,
making your feet cold and damp,
you must remember to
view the snow as a friend instead of a foe.
And what a friend … a friend that keeps on
giving and giving and giving
six months out of the year.
To which I say:
thank you my dear friend,
but I don’t need your generosity.
While I dread it, the start of December means there’s no denying that winter is upon us. And with colder temperatures and lake effect snow forecast for Central New York within the next couple of weeks, I wanted to share a winter-themed poem, inspired by some scenery I encounter when I walk near the Genesee Grande Hotel in Syracuse.
Cedar hedges wrapped in burlap,
awaiting winter’s bite,
like a family of mummies
snug in their tombs,
but poised to shake off the fabric
and reach for the sun
when the warmth of spring resumes.
I’ve been reading another collection of poetry by Charles Bukowski that I borrowed from the library. I’m up to page 138 in What Matters Most is How Well You Walk Through the Fire, and I came across a poem Sunday evening that seems fitting for the resumption of work following a long holiday weekend.
This little verse by Buk offers inspiration to reset one’s focus and seems to urge readers to value each day above everything else.
Here it is:
it’s a farce, the great actors, the great poets, the great
statesmen, the great painters, the great composers, the
it’s a farce, a farce, a farce,
history and the recording of it,
forget it, forget it.
you must begin all over again.
throw all that out.
all of them out
you are alone with now.
look at you fingernails.
touch your nose.
the day flings itself upon
Bukowski, Charles. What Matters Most is How Well You Walk Through the Fire.
New York: Ecco; First Edition, 2002.
The results of the annual MRI of my brain (with and without contrast) came through last night in the form of a radiology report uploaded to Upstate University Hospital’s “MyChart” patient portal.
The news is good, as the findings show “no evidence of recurrent disease.” With a history of three brain surgeries and Gamma Knife radiation behind me, I am thankful that the pesky craniopharyngioma—a benign, slow-growth tumor near the pituitary gland—appears to be hibernating inside my skull.
And in scanning the report, my eyes delighted in the formation of new word patterns that emerged from the medical terminology displayed on the screen.
Here is the outcome of my verbal exercise, a short, aggregated poem:
History of clivus.
Grossly unremarkable brain.
I’ve been away for a long time, as I’ve been preoccupied with work-related video projects. But I wanted to mention that one of my essays, Sunday Dinner, has been published in the online magazine The Cook’s Cook. In the story I reflect on spending Sunday afternoons at my maternal grandmother’s house in Rome, New York.