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.
Today marks the thirty-sixth 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 early teenage years.
Prior to the 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, after he picked me up from wrestling practice on a cold November night. This poem describes that encounter.
Brain Tumor Diagnosis
Dad put the car in park and let it idle,
and as I slid into the 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 razor 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.
“The hospital 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 know if I spelled it right.”
Scribbled in faint blue ink was the word “craniopharyngioma,”
although my father had misspelled it.
His voice cracked a bit as he said, “It’s cranio-phah-reng . . .
something like that . . . I don’t know, it’s some kind of brain tumor.”
I looked at the paper and felt a wave of satisfaction
as my father let out a sigh.
He seemed locked into position in the driver’s seat,
unable to shake off the news and go through the motions
of putting the car in gear and driving away.
I think we may have clutched hands,
and I said, “It’s OK Dad. Don’t worry.
But what do we do now? What’s next?”
“You have to back there for more tests. You may need surgery.”
“All right,” I said.
He switched off the overhead light,
and he drove out of the parking lot.
We grew silent inside the car
as we passed the naked trees lining Pine Street
in our city of Rome, New York.
While my father was crestfallen,
I remember being elated as I sat in the passenger seat.
The CT scan with contrast had given me a medical diagnosis—
a reason for my growth failure at age fifteen.
It explained why my body had not changed,
why I never progressed through puberty,
and why I was so different from the other boys my age.
I still considered myself a physical anomaly,
but the tumor proved it wasn’t my fault.
That knowledge gave me some satisfaction,
and I couldn’t help feeling a stirring of excitement.
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 drove on,
and I thought the word
would roll off my tongue like poetry if I said it out loud.
Craniopharyngioma. Cranio-Phar-Ryng-Ee-Oh-Mah . . .
sort of like onomatopoeia.
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.
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.
I just wanted to mention that one of my personal essays, Date with School Nurse, has been published by You&Me-America’s Medical Magazine, an online medical magazine. You can read the piece here. Thanks for taking a look!
And here’s the full text of the story:
I thought I was done visiting the school nurse after junior high school.
I thought I no longer needed to be excused from class and sent to the nurse’s office with a sore throat or tummy ache. And in fact no student enjoys seeing the school nurse. In addition to feeling sick, he or she is embarrassed about being separated from the rest of the class.
That’s how I felt when I had to visit the school nurse three times a week when I was a student at St. John Fisher College in Rochester, New York, in the late 1980s and early ’90s.
I did not have an acute illness. Instead, I suffered from panhypopituitarism—a deficiency of all of the hormones the pituitary gland produces—resulting from a craniopharyngioma (a pituitary tumor) that was surgically removed during my sophomore year in high school.
As a college freshman I looked like a 14-year-old boy and, initially, some of the other students mistook me for an academic prodigy. I had to explain to them I was of normal intelligence but appeared young for my age due to my pituitary condition.
My endocrinologist in Syracuse had prescribed me synthetic human growth hormone to help me grow, and my mother had learned how to give me the HGH shots when I lived at home.
But when I went away to college, my doctor had arranged it so the school nurse could deliver the injections. He said it was important for me to continue the treatment.
The nurse, Nancy (name changed), was in her forties and had shoulder-length dark hair. She wore red lipstick and a white uniform that hugged her voluptuous figure, and she reminded me of a less glamorous version of Jane Russell.
But her kindness and professionalism stood out more than anything else.
Her small health office was located in the basement of a campus building, just around the corner from a student lounge and down the hall from the college radio station.
I would try to go there early in the morning, when few students would be hanging out in the lounge. I didn’t want anyone to see me visiting the nurse on a regular basis because I considered my condition abnormal compared to students who had the flu or some other common health issue.
Nancy would greet me warmly when I would enter her office. “Come on in,” she would say.
We would make some small talk, discussing the weather, news, sports or plans for the weekend.
If she didn’t have a patient with her I would head right to the exam room in the back of the office, toss my book bag on the floor and get ready for the shot. She would follow me into the room, pull the growth hormone out of her small brown refrigerator, mix the solution and prepare the syringe, tapping it and releasing any air bubbles.
She knew my dosage based on the endocrinologist’s instructions. She also kept a chart in my file listing the dates and dosages of my injections, marking my progress as the months went on.
I would drop my pants and underwear and lean against the exam table, my cold fingers crinkling the white paper that covered the table. She would rip open an alcohol pack, and the pungent smell would hang in the air as she spread the alcohol on my buttock.
“OK, just a little poke,” she would say as she prepared to inject the medicine. I would feel the sting of the needle breaking the skin and then being inserted into the muscle, and the pain would intensify as she pushed down on the plunger.
Then Nancy would remove the needle, rub some more alcohol on me and say, “You’re all set. I’ll see you on Wednesday (or Monday or Friday, depending on the day).” I would pull up my pants, thank her for the shot and exit the office.
Her efficiency meant the visits to the nurse’s office never took more than five minutes out of my day.
Still, I felt humiliated that I had to go there three times a week. My physical appearance distinguished me from the other kids on campus, and I saw myself as an aberration because I needed drugs to initiate puberty.
And I am ashamed to admit it now, but while the other students at Fisher were pairing off at parties and having sex in their dorm rooms, Nancy was the only female to see me undress during my four years at the college.
Yet what made Nancy special was that she never called attention to my condition. She treated me according to the doctor’s instructions and expressed concern for me, but she never made me feel like I was special or peculiar.
To her I was just another patient, no different than one who had the mumps, the chickenpox or a sprained knee. She completed the task of giving me the shots without making a big deal about it. And her businesslike approach made me feel more comfortable about going there. Her office became a safe space where I could get the treatment I needed for a medical condition I had no control over.
And in time my body responded to the hormones I received. I grew in height, my features matured and I developed into a man. It was a long, circuitous trek, but my biological age finally caught up to its chronological equivalent, giving me a sense of normalcy in adulthood. And I have Nancy to thank, in part, for helping me to arrive here.