Do you want to know how I got these scars – Part Six – The button

My finger never strayed far from the button. I pushed it early and often. I told myself that I controlled the button but in fact, the button controlled me. It decided whether to respond to my pressure. It alone set the tone and tempo of my recompense. It was my salvation and my destruction.

Time flies when your wings are burned off. As I laid in bed in the hospital intensive care unit, recovering from fourteen hours of neurosurgery, tubes spilling from my body like tendrils in a high-tech jungle, I had a lot of time to think. Not in a focused, conscious way, but in the semi-lucid manner of an opiate-infused walking dream. Moments from my life drifted in and out of my mind like ghosts in a grey winter forest. I could see them from the corner of my mind’s eye. I learned to avoid looking directly at them or else they would dissolve again.

Contemplating a redwood forest in 2017.

I struggled with asthma as a child. Breathing was an all-consuming and exhausting labor. It was worst at night when I was trying to sleep. So many nights jarred awake, gasping for air in the darkest hour. I would call for my mother and father, and they would come, bleary-eyed but always there. If it was really bad, they would spirit me away to the emergency room in the dead of night. My memories of those journeys are indelibly infused with the scent of rubbing alcohol. Sometimes the doctor would have me breathe medicine from a vaporizer on the table. I would hunch over the machine with a cloth draped across the back of my head and breathe the wispy vapors that seeped from a hole in the top. On other occasions, the doctor would give me a shot.

After several late-night journeys to the hospital, the doctor began reaching for the shot first, my parents grimly nodding in the background. I hated getting a shot, of course, and they knew it. To my child’s mind, the needle was a painful and abhorrent violation of my only possession of any value–my body. Maybe they thought I was playing for sympathy. Maybe they were trying to wean me off of these late night hospital visits by making them more painful. Maybe they were right. But I still struggled to breathe. The next time I awoke in the middle of the night, gasping for air, I didn’t call out to my parents. I sat up in my bed and read my books until the attack subsided and I drifted off to sleep again.

My brain was a shrieking crescendo of nightmarish pain. It was three a.m. I didn’t want to wake up my wife and children. They were exhausted by the stress of my surgery, of caring for me when I’d arrived back home to recover. I thought of taking another pain pill. Try to ride out the pain. Go back to bed. But that would be dangerous. The pain was horrifically sharp. It was as if an instant replay of the surgery had begun, the scalpel slicing into the soft flesh of my inner ear, the whirring drill crashing through my skull. But here at home in the middle of the night, my family slumbering at last after a long and taxing day, there was no anesthetic to mask the pain. There was no morphine button.

I had just come home after a week in the hospital. My head was wrapped in a bandage like Frankenstein’s monster. I couldn’t go back to sleep. The pain wouldn’t let me. I couldn’t sit up in my bed and read my books. Reading was impossible anyway because of the pain. Worse, the pain was a dangerous sign that something was wrong. Through a haze of agony I realized that this was how it happens: I could die right here in bed from a hemorrhage while my wife and children slept.

“I need to go to the hospital.” My voice resonated back unfamiliar, disembodied. I hadn’t adjusted to my sudden and utter deafness on one side. Hearing myself speak was an eerie sensation. It was as if my voice was coming from somewhere outside of me. I reached out and weakly brushed my hand against her arm. She was instantly awake, her eyes straining to focus in the darkness. She reached over to the bedside lamp. The light filled its corner of the room and we were cast into sharp new shadows.

To be continued.

Part seven coming soon.

Do you want to know how I got these scars – Part five

My eyes were covered by a sterile sheet of cloth. I could hear the voices of a dozen surgeons and technicians calling out and responding to each other–the opening steps of a complicated surgical dance. My head was resting on its side with only my right ear exposed, facing up on the operating table like a delicate cutlet served on an immaculately prepared plate.

“Count backwards from one hundred.” I couldn’t see the anesthesiologist because I was laying on my side with my back to him, but I could hear his voice. My own voice resonated back, disembodied, as I counted off the numbers in darkness. I could feel myself beginning to float. The sounds of the surgeons’ voices intensified yet became more distant as I drifted away from consciousness. My lights went out by ninety-four.

There was a time when I used to dance. I began dancing when I was eleven years old, practicing my moves in the covered patio of my family’s rented house in Hayward. My friends and I spread cardboard across the concrete floor and competed to see who could complete the most backspins, and who could break out of a spin to end it with the best pose. One of my favorite moves was “floating,” which gave the illusion of effortlessly walking in many different directions at the same time.

I was surrounded in total darkness, and the floor was spinning violently beneath me. An instant ago, I’d heard my own voice intoning the number ninety-four. The next instant I was cast into a wild tailspin of darkness. I didn’t know it at the time, but seventeen hours had passed. Now I was clinging to the edge of a vortex, trying desperately to stay on top of it. The spinning was more severe than ever I’d felt even in my worst and most dangerous drinking binge.

I opened my eyes to a tiny slit, allowing a thin haze of grey to penetrate the darkness. The world spun even faster. I could hear my wife’s voice calling to me. My friend was there as well. I called out to them, to let them know I was here, please come and get me. All I could manage was a faint moan, and the darkness enveloped me again.

Me in my Mr. Bounce tee shirt on a sunny California winter day five months after my surgery in 2008.

I came of age in the 1980’s. It was the golden era of twentieth-century greed, grime, and glitz. In those days, everything had to be bigger, brighter, and brasher than what came before. Hairstyles were tall and voluminous. Shoulder pads in jackets and other attire achieved linebacker proportions. The predominant aspirational lifestyle was one of conspicuous consumption and fantasies of wealth injected with sex, plastic, and electronics.

Back then, I was fascinated by those massive “boom box” music players. I always wanted to have one of my own, with all the bells and whistles–the bigger, the “deffer.” It’s only in hindsight that I can fully appreciate how well they characterized that extraordinary era. The dozens of impressive lights and dials that don’t actually do much to improve the quality of the sound. The voracious consumption of batteries that drained in an hour and then were thrown away to leak out of sight in some forgotten place. The hulking plastic body trimmed with blinding veneers of faux gold that soon chipped and faded into a lackluster patina. The thousands of black-on-black plastic parts that were engineered to fail, were not user-serviceable, and could not be replaced.

“The best odds we have to fully resect the tumor and preserve the facial nerve is to use the trans-labyrinthine approach.” The neurosurgeon was hunched forward in his office chair, elbows on his knees, his hands clasped in front of him as he explained my options for the surgery. His shirt collar was open beneath his sport coat, and he had a slim gold and black watch on his wrist. “That approach will give us the most visibility and the best angle, without question. The drawback is that we would have to cut through your labyrinth, because it is directly in the path.”

In order to remove the tumor that was fast growing inside my head, the surgeons would cut across the labyrinth of my inner ear, effectively sacrificing it to open a clear path to get to the tumor. The labyrinth is the body’s mechanism for regulating one’s senses of hearing and balance. Without it, there is no hearing, and no sense of balance. I had little choice – my labyrinth would be sacrificed to save my life and give my surgical team the best conditions to remove the tumor, preserve my facial nerve and avoid disfigurement.

The surgery would be delicate and risky. The damage would be extensive and painful. But if all went according to plan, I would survive. It would take weeks of recovery to regain my balance, to walk unaided again. My one remaining labyrinth in my other ear would adjust to doing the work ordinarily performed by two. But my hearing and balance would never be the same. My days of effortlessly “floating” in many different directions at the same time would soon end.
Ninety-seven… ninety-six… ninety-five…

Part six coming soon.

Do you want to know how I got these scars – Part four

“Don’t look at that right now.” The doctor placed her hand over the illuminated image on the light box in the wall. She could see that I was transfixed by what I saw. My eyes were locked on the MRI scan, and the prominent dark spot it revealed growing inside my head. I realized in that moment that my life will end too soon, and I won’t be ready when it happens. She must have seen that realization in my eyes, so she simply placed her hand over the dark spot.

Sometimes I can see it in people’s eyes when I’m talking with them, even if they don’t say anything. On occasion they’ll cut through the veil and ask me, totally out of the blue: are you okay, is something wrong, are you upset? They’ve detected something in my face—an unexpected trace of sadness or dismay in my expression.

I can feel it in my face when it’s happening, a kind of tingling or numbness along my cheek and the corner of my mouth on one side. It’s more pronounced when I’m tired, or when I’m feeling stress, or when I’m thinking intently about a problem or complexity I’ve encountered. Most concerning is when it happens for no reason at all.

The neurosurgeon told me that his biggest concern wasn’t the challenge of drilling open my skull behind my right ear. Nor was it the delicate task of slicing through the labyrinth of my inner ear to expose the tumor, or the mind-bending prospect of safely cutting it out and removing from its deeply embedded resting place without damaging my brain. His biggest concern wasn’t even my severely damaged hearing, which is what first alerted me that something was wrong. His biggest concern, he told me—the biggest challenge of my upcoming surgery—was the facial nerve. The tumor had grown completely around it.

If the facial nerve is damaged during the surgery, if it’s stretched, or nicked by the scalpel, or in the worst case scenario, severed, the right side of my face will lose muscle control and my eye, cheek, and mouth on that side will permanently “fall” or slump downwards, he said. He put his hand to the side of his own face and dragged his fingers down down his cheek to demonstrate. His eye and mouth melted grotesquely down on one side, like a child making a funny-sad face in the mirror.

I try and fail to pretend that I’m not a vain person. I’ve come to terms with this personality trait, or flaw, depending how you look at it. I work hard to minimize the worst aspects of it in myself without killing the positive ones, and I do believe there are a few positive ones. It becomes easier to manage as I get older, in part because every day I learn I have less to feel vain about as I once thought I had.

Myles and me on the balance rings in 2004, a few years before my surgery.

I’ve learned that vanity is an especially unbecoming companion as I grow older. Maintaining dignity and pride in oneself and appearance is important, but as we age we should know better than to allow our vanities to go completely unchecked, lest a candid moment in reflection give the lie to our illusions. After a few dozen torrid trips around the sun—and we all make the journey every year—the stamps on our passports become plentiful and obvious. The pages grow more dog-eared and rumpled with each handling. Eventually we all run out of room for another stamp. Eventually we all come to the last page.

Under the bridge in 2017.

Part five coming soon

Do you want to know how I got these scars – Part three

When it comes to drugs, the most powerful one I’ve ever tried, by far, is morphine. I’ve tried others; there’s no honor in pretending otherwise. But it was morphine that helped me understand the true allure — and consequence — of humanity’s long, thorny love affair with mind-altering substances.

Before my experience with morphine, I thought that different kinds of mind-altering substances had different purposes: alcohol to relax; marijuana to alter perspective; tobacco to ease stress; pain-killers to, well, kill the pain. After my experience with morphine, I came to understand that mind-altering substances actually have only one true purpose, which they never achieve: to kill pain. So many different kinds of pain. Physical pain, emotional pain, psychological pain, social pain. The human condition is defined by pain. We are born with it, we live with it, and it lives on in our loved ones after we are gone.

With morphine, I learned that it is not possible to kill pain. One can prevent it, or failing that, delay it — but eventually we all must endure it. What morphine does frighteningly well is put the pain on a very long, very distant, and very soothing layaway. And when it comes due, it comes with a substantial amount of interest.

I like to get down. Me at a friend’s party in San Francisco in the 1990s.

I wouldn’t be alive today without the modern anesthetics and pharmaceuticals that made it possible for neurosurgeons to slice open my head, vaporize a section of my skull using an insanely fast surgical drill, cut through the labyrinth of my inner ear to expose the nerve bundle behind it, and delicately resect (cut out) the strawberry-sized tumor that had grown around the nerve bundle the way an old tree grows around the wires of a chain link fence. I would have died from the intense pain; I would have died from the trauma; I would have died from infection. There are a thousand reasons why I shouldn’t be alive today, but here I am. And one of my biggest heroes of the whole painful and terrifying affair, besides my wife, my children, my parents and extended family, my friends, my employer, my health insurance, and my amazing, god-like surgical team, was morphine.

The full force of a massive and thunderous waterfall falling directly onto the right side of my head, which is pinned against a rock at the bottom. A hydraulic press bearing down with four tons of force, merciless and unrelenting. A thousand watts of microwave energy screaming pain and emanating inward from the furthest reaches of space, yet outward at the same time. I felt magnitudes of pain after my surgery. I never forgot for a moment it was there. I could see it and touch it in my mind, painfully and viscerally, and I didn’t care. The morphine drip took care of it. The morphine didn’t erase the pain. The pain was still vivid, torrential, devastating. The pain was shredding me into millions of jagged strips that I would never put together in the same way ever again. I just didn’t care about it at the moment.

Drip… drip… drip.

Part four:

Do you want to know how I got these scars – Part two

I tell myself that I am a lucky person, because I have figured out the key to my life: F-sharp, or sometimes G-flat, depending on my mood. It’s the tone that accompanies my day, every moment of my waking life, and deep into the hours I spend asleep.

Ten years ago, the living mechanism that transmits sounds from my right ear to my brain was purposefully destroyed. What may be most surprising about this violent and irreversible act is that when it happened and I lost my hearing on one side forever, I was more grateful than I ever have been in my life. This is because it quite literally saved my life.

But I’d be lying if I said I don’t still feel the loss. I feel it every day, some days to the point of tears, because I’m reminded of it every day, every second of my life — loudly.

Press play to hear what tinnitus sounds like. Remember to turn up the sound on your device. Be careful – the sound can be loud and irritating. This audio is the best approximation I could find of the constant ringing sound I personally “hear.” My personal volume is set between six and seven. Audio file courtesy of American Tinnitus Association 

It’s true that the mechanism of my inner ear, called the labyrinth, cannot transmit any sound to my brain — not even a nuclear blast would register even the tiniest audio signal in my right ear because my labyrinth on that side doesn’t function. Still, the brain is nothing if not inscrutable at times, and often responds to signal changes in unpredictable ways.

The day my right ear went deaf to external sounds, I began to “hear” a new sound from within. I began to hear, quite clearly and loudly, the sound of F-sharp (or G-flat), ringing true and high above a constant haze of static noise. So far my brain has held that note uninterrupted for ten years. I’m placing my bet that it will hold for the rest of my life. I hope it lasts a long, long time.

The doctor called me the morning after my MRI scan. Her voice was calm and soothing but purposeful. “I’d like you to come in so we can review the results of your MRI together. Does 2:30 this afternoon work for you and your wife to come in? Very good, I’ll see you then.” She said more than just these words during the call. But of all her carefully framed expressions, these left the most vivid and indelible impressions on the canvas of my memory. We immediately made arrangements for my parents to watch our children, and made the journey to the doctor’s office that afternoon.

They’re passé now, but there was a time when everyone wanted a flip-phone. They were the ultimate in hip and sleekness, a major upgrade from the old “brick” phones. Being able to call people up whenever you wanted, from wherever you were in any given moment — that was an awesome new freedom. And flipping it open and shut was such a cool feeling, like having a Star Trek communicator (if you’re into that), or like being an international jet-setter closing million dollar deals from the deck of your yacht (if you’re into that).

Back in those days, I mainly used my flip-phone to take photos of my children and to talk to my wife while I commuted long miles home from work. My boys were very young at the time, and talking to my wife about the events of their day was by far the best part of my long, slow evening drive across the bridge over San Francisco Bay. Back then, there were no “hands-free” driving laws. In bumper-to-bumper traffic, every other driver had a phone stuck to the side of their face, myself included. It was awesome, and more dangerous than anyone knew at the time.

The other awesome (and dangerous) thing about flip-phones was the camera. I loved being able to take as many pictures as I wanted without developing every shot. Plus, I could upload and share pictures with others — that was a completely new and amazing freedom back then. I started my Facebook account for the sole purpose of uploading photos of my kids, because it was the easiest way to get the photos out of my flip-phone and onto a computer.

John and Myles eating apples shortly after my surgery in 2008.

Some people think that cell phones can cause brain tumors. Others have gone to great lengths to assure us that they don’t. I personally don’t think that modern cell phones pose a significant risk of brain tumors. To be honest, I wonder but don’t know how much risk there was ten or twelve years ago, back in the wild-and-woolly days of flip-phones.

One thing I remember very clearly is the warm sensation I would feel deep inside my ear after talking on my flip-phone for a long time. But that may simply have been because the phone was warm, and my ear was warm, and two warm things tend to warm each other up even more, when they’re held closely to each other.

Cell phones are a truly great and revolutionary human invention. There seems to be no limit to the technological advancement the human race is capable of achieving. I hope and believe in my heart that this statement is true. I hope that it stays true, and comes true. If within my lifetime the next great human invention is an actual working time machine, one of the first things I’d use it for would be to go back in time to 2005 and tell past-me to never put a flip-phone to my ear ever again. Just to be safe.

“This is an impressive room,” I blurted out through a murky yet uniquely crisp haze of hospital-grade sedative. The operating room gave me the impression of a space capsule’s cockpit, with densely arranged lights and stainless steel instruments and complicated gauges and monitors crowding the walls and suspended from the ceiling all around, except this rocket ship’s cockpit was the size of a living room and everything was focused on a large white operating bed in the center. The room was filled with at least a dozen surgeons in blue surgical gear and masks, standing elbow-to-elbow each at his or her respective station and instruments. They all turned their heads and faced the doorway when I entered the room clothed in a hospital gown and uttered my comment. They paused for only a fraction of a second before turning their backs to their preparations.

Part three: