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.

redwood
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.

mr-bounce.jpg
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 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.

funkytown
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:  https://cityliteral.com/2017/09/10/do-you-want-to-know-how-i-got-these-scars-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-July-2008
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: https://cityliteral.com/2017/09/04/do-you-want-to-know-how-i-got-these-scars-part-three

 

 

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

I have a hidden disability. It is not readily apparent or visible to most people. I do my best not to call attention to it unless I have to. I’ve adapted to it, mostly. Some days I can almost forget it’s there. But it’s always there.

In 2008, I began to lose the hearing in my right ear. At first I thought my ear was “plugged up,” as sometimes happens when one has a cold. But after it persisted for several weeks, I figured I should go see a doctor and have it checked out.

(At this point in the story, I want to say that I’m thankful that seeing a doctor was even an option for me. I fortunately had medical insurance through my employer. There was a time in my young adulthood when I had no medical insurance for several years. If this had happened then, I wouldn’t have gone to the doctor, because I couldn’t afford even a simple doctor’s office visit, much less any treatment.)

scar2
The C-shaped scar around my right ear. Sometimes people mistake it for a bad haircut, or a bad-ass scar from a bar fight (I wish). But it’s actually from a translabyrinthine craniotomy to resect an acoustic neuroma, i.e. brain surgery to remove a benign tumor from my acoustic nerve.

That first doctor’s examination was relatively uneventful, as far as I knew at the time, being relatively young and having never had any significant health issues before. After asking me a series of typical diagnostic questions, the doctor looked in my ear and reported seeing nothing out of the ordinary. She told me that sometimes temporary hearing loss is caused by a virus, and then prescribed a steroid treatment. (Taking steroids was an interesting experience, to say the least — but that’s a story for another day.) But before ending the examination, she told me that she would schedule an MRI (Magnetic Resonance Imaging) test, just to be certain.

I, in my carefree way at the time, didn’t find this alarming. Doctors run tests all the time, just to rule things out. I figured that the MRI was just that: ruling out anything more serious than a virus. I had medical insurance. It wouldn’t cost me anything out of pocket, I reasoned. Tests like this are what we pay premiums for. Plus, I was taught to always follow the doctor’s advice.

When I arrived at the MRI department the following week for my test, I was juiced up on steroids, which again was an interesting state to be in, but that is beside the point of the present story. It was at the MRI exam that I first realized that my condition was potentially very serious.

The MRI technician was a no-nonsense man, middle aged, serious in mien, wearing a lab coat, apparently of eastern European descent, rather gruff, and my first impression of him was that he probably cranks out fifty MRI exams per day, every day, and he has no time for pleasantries nor any bedside manner because those things are time consuming and are not necessary for the accurate scanning of people’s body parts.

The thing I remember most about that experience wasn’t the oddly comforting feeling of being nestled inside the futuristic-looking MRI chamber, nor was it the technician’s clipped, rather stern verbal instructions over the intercom reminding me to hold still, nor was it the incredibly loud and knocking racket the machine made. What I remember most came after the test was done and I was getting dressed to leave.

Next to the big room where the MRI machine stood, there was a little booth filled with controls and video screens where the technician sat and did his work. As I moved from the MRI room to the little dressing room, I caught a glimpse of the main screen showing a scan of what appeared to be a human head, apparently my head. I marveled at the technology as the technician tersely ushered me through the curtain.

When I emerged from the dressing room, I saw him seated in his booth looking intently at the screen. When he noticed me coming out, he stood up and came over to me, standing in such as way as to subtly block my view of the screen. I was holding my coat in my hand, and as we exchanged words to wrap up the session, I began to put it on. To my surprise, he began to help me put on my coat. The way he held up the coat and helped me put it on was striking. He was suddenly very kind, even adjusting my collar. He told me that the doctor would review the test results and get in touch with me. But in his eyes I sensed he was telling me more than his words. I knew that he could not tell me what the scan showed, and I didn’t ask. But it was in that moment that I knew this was no virus.

Part two: www.cityliteral.com/2017/09/02/do-you-want-to-know-how-i-got-these-scars-part-two