The Piano Man and Me

On my connection to Billy Joel after his recent announcement

Thank you, Billy Joel. Thank you for your music, and your good swift kick to my posterior. I can no longer take my health for granted. Photo credit: New York Times

While dubbing myself a superfan would be an outright lie, I have always appreciated his talent in both the composition and performance of his songs. Growing up outside of New Haven, Connecticut- Joel’s roots in The Bronx were not too far away, so his ballad, “The Downeaster Alexa”, which is set off of Long Island, becomes extremely relatable geographically, especially as the ship cruises through Block Island Sound. Having spent four years of my life living in southern Rhode Island, it was easy to picture a trip to the beach where I stood on the rocky shore, watching the Alexa churn past upon the waves. The Piano Man even sang our Senior Prom song of twenty-five years ago, “This is the Time to Remember”, which is already playing in my head while words are making their way through my fingers.

You could imagine my reaction of concern when the sudden cancellation of his current tour was announced, but my interest peaked when it was announced that it was due to a medical diagnosis having to do with the brain. Sorrow was the first reaction, yet my own history precipitated curiosity, as the possibility of a similar pronouncement became real.

Soon, it was revealed that the condition at hand was normal pressure hydrocephalus. This malady occurs with a buildup of cerebrospinal fluid in the ventricles of the brain, which can cause them to enlarge, thereby increasing outward pressure upon the skull cavity. A multitude of symptoms can result from this, including but not limited to headache, gait difficulties, pain, and dementia. While the number of those affected is rather low, it is believed that a significant number of cases may go undiagnosed. Once diagnosed and treated, patients can live a happy and healthy life with symptoms kept at bay.

My reason for a high interest in Billy Joel’s diagnosis is my own affliction of NPH, present for as long as I can remember. At ten months of age, my pediatrician noticed a series of darker-colored splotches around my chest and stomach, which are referred to as café-au-lait spots. This, and other small growths upon my young body prompted a diagnosis of Neurofibromatosis Type 1. This condition results in the changes in skin pigmentation, but also benign tumors that grow on nerve tissue. While it is not a form of cancer, extremely rare cases have seen these non-malignant growths become cancerous at any time.

Almost all of the doctors that I met with over the years were of the pediatric variety and are now hundreds of miles to the north and east of me. Many have now either retired or passed away, but the desire to lift up their names is strong, so I wish to do so here. Dr. Richard Whelan, Dr. Susan Levy, Dr. Margaretta Seashore, Dr. Zeno Chicarilli, Dr. Gregory Criscuolo, and Dr. Robert Lesser were those who are remembered for taking excellent care of me during my pre-adult years, making sure that my condition was kept under control, and that I was in the best possible shape that I could be. My parents were always by my side throughout it all, especially my mother who accompanied me to countless appointments, asked an inordinate number of questions, and helped to alleviate my fears.

My affliction was minor, and by the age of ten I was being consistently monitored by doctors and receiving annual MRI scans to keep tabs on an optic glioma, which was a benign growth on the nerve that connects the eye to the brain. In the summer between the fourth and fifth grade, one of these annual diagnostic imaging procedures picked up swelling with my ventricles, enough that it was elevated to several conversations with doctors, and the decision that I would undergo a procedure to place a shunt on my brain to divert the fluid that was pooling in the ventricles.

This first surgery was explained to me with great care, so much so that I do not recall having much if any trepidation, even as I was wheeled into the operating room. My hospital stay once it was over was brief, and before I knew it I was back home engaged in many of my normal activities but was unable to take part in any sports that may result in a blow to the head. Everything went swimmingly until about three years later when a shunt malfunction landed me back in the hospital, where this time a procedure was attempted that would place a small hole in the ventricle that would allow for smooth draining and the alleviation of any need for the shunt. Days after, the hole closed, and the shunt was replaced. More scans were completed throughout my high school and collegiate years, and to this day the shunt placed upon my brain in 1995 is still operating.

One might wonder how a piece of medical equipment installed for thirty years is still operational, but an MRI scan three years ago indicated no presence of NPH, and a clean bill of health. This scan was through an opportunity to meet with a series of doctors specializing in NF1 through the Levine Cancer Center in Charlotte. Were issues to be present where hydrocephalus had made a comeback, I’d be faced with blinding headaches (which did occur at times when the original shunt malfunctioned), no ability to focus, vomiting, and a slew of other issues. My ADHD symptoms would also skyrocket, leading to a near paralysis at work, and at home.

I consider myself to be extremely lucky to have seen minimal effects of what could have been a horrible case of NPH. Life has been humming along, and while it was now three years ago, my meeting with a small conglomerate of medical professionals eased any anxiety catalyzed by a dearth in years since last having a consultation regarding my condition. I am at an age where health can no longer be taken for granted, and while there are other tests and scans now on the short list, I am always making sure that no symptoms have arisen that may indicate swelling on my brain.

The first Billy Joel CD I owned. The Barnes & Noble where I worked during high school was next door to a store that sold CDs (Coconuts). Photo Credit: Amazon

The finding of the Levine Cancer program was a godsend, as was the MRI with the lack of any identifiable hydrocephalus. I now have a point of contact should anything go awry, and a baseline scan can now assist in finding any potential areas of concern. However, the recent events have shown that I may have been lulled into a false sense of complacency, and if any good has come from Billy Joel’s news, it has thrust my own diagnosis upon center stage.

Billy Joel has without his knowledge given me the most intense wakeup call I’ve ever received. It may have been the litany of doctor visits that I had as a child, but to have a life over the past twenty-five years that has been nearly free of any medical issues, I am afraid that I now sit in the corner of the room, my ears plugged and my eyes closed when it comes to my health, and the potential for things to go wrong. This could easily become a moment for self-chastisement, but rather it serves as inspiration.

Over the course of a decades-long career, the Piano Man has amassed a fan base that easily numbers in the millions, as well as a family of his own. This large number of those to hold Joel in high regard would has led to grave concern from around the world as the news broke and became clearer with time. Prayers and well-wishes are coming from near and far, as all hope for a speedy recovery for a man who has delighted audiences of all ages for many years.

My reasoning for wanting to stay healthy and keep tabs on my body are also for my fans, though the term might be slightly off, and the number is far less than multiple millions. However, I have two living parents, two sisters, a wife, and a young daughter, all of whom would be afflicted by a decline in my health, or my passing as a result thereof. I also have a hundred current students, and the number I’ve now taught here in Charlotte will soon be nearing one thousand. Let’s face it…a handful of them could possibly be upset by my demise. It is for this reason that I resolve to make necessary appointments and also begin to undergo necessary tests as a result of my crossing the threshold where my youth is now behind me. Whether it is further testing that will keep the NPH and NF1 in check, or age-related tests such as a colonoscopy…the time is now to make sure that I am here for the long haul.

Some look upon death as the moment when they stop living their own Earthly lives, and fear of their last breath results in a chasing of the holy grail of longevity. The idea of ceasing to exist is too much for many to bear, and for understandably selfish reasons, a long lifespan is desired. Yes, that is a good reason for me to undergo necessary checkups and tests, but with age and a deepening of my faith, I have realized that it is far from the most important reason. While my number of fans is dwarfed, no…seriously- dwarfed by Billy Joel’s, there are a number of those in my life who depend on me, who care about me, and whose lives would be significantly altered if my health saw a sudden, or even gradual decline.

The news from this past week was jarring, and even a bit frightening as it brought me face-to-face with the stark reality that running away from health issues via pretending that they don’t exist is no longer an option. It brought me before my laptop to pen what in my own mind has been one of the most difficult pieces to emerge from my grey matter, yet the ease of which is due to the successful diagnosis and treatment of a condition that has rested upon the back burner for decades. While mortality is inevitable, there is no reason it should be hastened due to a bombastic mentality that everything will continue to operate as per usual. I have been extremely lucky to have had minor symptoms throughout my life thus far but cannot assume that it will be the status quo forever.

Thoughts and prayers have become politically charged as of late, but mine will still be sent to Billy Joel, while I also shower him with gratitude for opening my ears to his music, but also my eyes. For I now see what must be done to ensure health and happiness for years to come so that I and those I love may have many forthcoming times to remember.