Playing with fire

By the age of three I had mastered such standard life skills as how to stack things, how to operate a toilet, and how to start a fire. Indeed, I nearly burned our house down. You’d think that such a traumatic experience at that age would make some impression on my developing brain, such that my childhood fascination with fires would stop. You’d think that.

When you’re the seventh of ten kids, the question of what to do with your free time is often up to you. Even the best parents to ever walk the face of this earth (e.g., my mom) have only so much time to spread around.

I’ve a memento from one of my very earliest attempts to entertain myself. Sitting on the kitchen floor, possibly still in diapers, I extracted cans of vegetables from the cabinets beneath the stove and decided to stack them as high as I could. After making a tower much taller than it was stable, I looked up just as gravity did what gravity does. The gash on my lower lip, from a can of creamed corn whose fall to earth was interrupted by my face, left a scar for life.

I found bathrooms laden with new and interesting things. The sinks and tubs were cool. And the toilet? Utterly fascinating. I made deposits far more frequently than was necessary, just so I could watch them disappear in that entertaining vortex of rushing water. With astonishing speed, I developed a fine grasp of the mechanisms involved in the essential bathroom functions, if not their correct names. Learning the verb “to pee” was easy enough. But when Mom referred to the other one as “moving your bowels” I thought she said “moving your bottles,” and that is how I referred to it for more years than I care to admit.

I was particularly bored one morning, at the age of not-quite-four, in the fall of 1966. School had just started so the house was relatively empty of kids. My sister Barb was home, up in her room getting over a bug going around, and Mom was busy tending to Marty and Kenny upstairs. I was downstairs in the kitchen, drawn to the stove and its magical feature: You don’t need matches to make a fire with this thing, I had observed. You just turn those knobs.

I couldn’t quite reach those knobs but solved that problem using those cans under the stove. Perched atop two giant cans of Hawaiian Punch fruit drink, it took me no time at all to light a little blue ring of fire. Couldn’t I make it any bigger, I wondered? Why yes, I could.

Mom stored leftover bacon grease in a paper milk carton with the top cut off, right next to the burners. I bellied myself onto the countertop to reach the grease carton, tipped it over, and took in the comforting smell of bacon grease as it oozed onto the stove before transforming into a most impressive flame. But then came the smoke. It was black, and heavy, and it made my eyes burn. I stepped off the Hawaiian Punch cans then ran upstairs to where Mom was changing Kenny’s diaper.

I did not report what was going on. Cloaking myself in nonchalance, I meandered to the open window, looked onto our backyard below, and after a relaxed moment or two turned and pointed outside. “Look at the smoke, Mom.”

She did as instructed, only to see a tower of inky black smoke pouring out of someone’s window. Ours. “Barb!” Mom yelled to my sister. “Get out here!”

Mom looked into the kitchen as she hurried us all to safety. A glance at the Hawaiian Punch cans and toppled grease carton were no doubt all the clues she needed to know what had happened. The flames were now climbing the back wall of the stove and licking the wooden cabinetry above. The black smoke was clinging to the entire first-floor ceiling of our house, like a heavy blanket defying gravity. Dad and my older brothers had painted those ceilings, indeed every wall in the house, just days before.

Barb took us into the garage and into the car while Mom tried to turn off the stove. That’s when the miracle happened. A volunteer fireman, clearly following careful instructions from God because how else does one explain this, had been driving up North Point Road just as smoke began billowing out of our kitchen window. He stopped his car and burst inside to find Mom in the burning kitchen.

“We need a blanket,” he told her, pulling Mom aside and switching off the burners. “A table cloth?” she asked, eyes burning. “Get it.”

Mom fetched the big green tablecloth, the nice one we only used for Sunday dinner, while the fireman ran water in the sink. Using the soaked cloth, they soon smothered the flame. As billows of white steam overtook the black smoke of a defeated fire, a crew of firefighters burst through our front door, the nozzle of a ready fire hose in their hands. Luckily for us they never turned it on. It saved the house from who-knows-what kind of water damage. The smoke, however, did plenty. It got into every room, every drawer, and every stitch of clothing inside those drawers.

Mom wasted no time in commencing a clean-up effort. She and Alice Albro, Mom’s neighborhood friend who had rushed over at the sight of the fire trucks, had buckets and sponges out in no time. They were wiping down walls when Warren Baker, the State Farm insurance agent who had sold us a homeowner’s policy just the month before, arrived at the scene.

“Girls, you can put down those buckets,” said Warren, who then delivered the news that State Farm would take care of everything, including putting us up in temporary lodging while they fixed up our house. So while Mom, Barb and my little brothers moved into Grandma’s house next door, the rest of us guys enjoyed a life of luxury at the Trailways Motor Lodge and Restaurant, complete with daily maid service, all-you-can-eat meals, and a different dessert every night.

“Eat up,” our dad encouraged his growing boys at the restaurant dinner table. “State Farm is paying for it!” Our last night at the Trailways, my brother Bob ate so much chicken and dumplings he threw up right at the dinner table. We didn’t stay for dessert that night.

Did the experience extinguish my fascination with fire? Hardly. Over the next few years, Mom was forever finding books of matches in my pants pockets—I swiped them whenever I could—and my older siblings nearly tired of ratting on me for my little grass fires in the yard. Mom and Dad certainly tired of telling me not to play with matches, and resorted on one occasion not to spanking or scolding but with something rather creative. They invited me to a movie.

The 1968 film Hellfighters starred John Wayne playing the real life oil well firefighter Paul “Red” Adair, who was famous for putting out gushing oil wells that had burst into flames. Mom and Dad took me to the French Village drive-in movie theater to see it. And they only took me.

John Wayne as Red Adaire

I really liked the movie, at least the first 20 minutes or so, which is all I saw from the middle seat of the station wagon, perched on the big hump on the floor we called the watermelon, before falling asleep. Mom had brought grocery sack filled with popcorn she made at home and smuggled in. To hear the movie there was a speaker, a big gray metal thing with slits where the sound came out and a knob to adjust the volume, hanging inside a window.

If my parents thought the experience would get pyromania out of my system cathartically, by watching huge fires up on the huge screen, they were unfortunately wrong. I kept stealing matches and just got better at hiding them—I found my clean black socks a fine place. And one day I used them to again summon the Fairview firefighters.

Most of the lots in South Bountiful Heights had houses on them by the late 1960s but a few remained vacant. One was on Bountiful Drive not far from our house. The grass and weeds grew tall there, so a kid could crouch down and not be seen by passersby. One day I headed there with my matches. It was a very hot day and when the wind blew it was like opening the door of an oven. The dry grass crinkled at my ankles as I waded through it.

Depositing myself where the grass was tallest, I struck a match. The flame was a nice one and I held it close to my face, wondering why it was blue at the base and then turning reddish yellow. I made a mental note to ask my brother Steve. He could always explain stuff like that.

I didn’t need to feed this fire. It founds its own fuel and spread in all directions, indeed with alarming speed. When I realized the smoke might be visible to others, I sprang to my feet and ran off. It took no time at all for others to see the smoke and call the fire department. On my way home, the town’s little red fire jeep passed me by. It sped to the fire and began putting it out and was soon joined by pumper trucks, whose deafening sirens really got to me. Or something did.

When I got home I decided to stay quiet. Unlike the kitchen fire, the fire on Bountiful would never be credited to me. Had I brought it up, I’m pretty sure Mom and Dad would have figured out it was mine. And then I expect they would have done the only sensible thing and sent me off to reform school.

Fortunately, no such measure was needed because the Bountiful fire was my last. Never again would I set a fire I wasn’t supposed to. We moved to Washington, DC when I was ten, and our new house there had a fireplace where I helped Dad build lots of fires. I think that helped. So too did joining Boy Scout Troop 1092. On countless camping trips with those fellas I learned to build fires safely and, I might add, with rather some finesse.

Indeed, I got pretty damn good at building fires. Nowadays I can still get a roaring fire going with no more help than the sulfur on the tip of a match.  And I do so whenever I can. It’s still fun.

Mike’s 1966 birthday. Standing left to right: Ed, Mike, Mom, Marty, Barb, Grandma, Ken. Notice Mom keeping me away from the candles.

Where I learned Black lives matter

I learned that racial discrimination is wrong the same place I suppose some people learn it’s okay. At home. From my parents. Most of this education took place during the late 1960s and early 70s, in Fairview Heights, Illinois, where I lived until I was ten. And, like the best lessons from parent to child, all I had to do was watch.

Mom and Dad were torn when, in 1962, they had outgrown their two-bedroom house in East St. Louis. With a seventh child (me) on the way, they desperately needed a bigger place. They found one in Fairview, just up the bluffs from their decaying industrial hometown of East St. Louis. They loved their house in an all-new subdivision. But they were keenly aware they had joined a parade of white families fleeing Black ones. And it bothered them.

My parents themselves had learned racial tolerance from the words and deeds of their own parents. As little kids, when my mom and her sister needed a babysitter when their mom went into labor, their dad invited Addie, a Black woman and family acquaintance, to stay at their house. When my dad got his first job at the New York Central Railroad, where his dad was Chief Clerk, my grandfather assigned his very best stevedore, a Black man, to be his son’s mentor.

After settling into their split-level on Primrose Lane, Mom and Dad had an idea. Maybe they could host coffees at their house, inviting their old Black neighbors from East St. Louis to sit with their new white neighbors? If families would just get to know each other, they figured, new friendships could be made to help bridge the racial divide.

After broaching the idea with a few of their neighbors, the coffee idea went cold. There was zero interest. And asking Black friends to come to Fairview could put them in harm’s way. The police were said to idle their cruisers at the base of the bluffs on Highway 50, watching for cars with dark-skinned occupants heading up to Fairview, cars that were promptly escorted out of town. Intimidation like this kept the number of Black visitors to Fairview at approximately zero—and, for many years, the number of Black residents at exactly zero.

As a devout Catholic and avid reader, Dad kept up with what the Pope had to say, which was quite a lot in that era of reform known as Vatican II. The 1967 papal encyclical Populorum Progressio by Pope Paul VI addressed the needs of “those who are looking for a wider share in the benefits of civilization.” Dad thought of Black people. It spoke of the Church putting herself at the service of all, and proclaiming “solidarity in action at this turning point in human history is a matter of urgency.” To Dad it was a clarion call to get to work.

Dad had stayed in touch with Father Goldammer at St. Elizabeth’s, the East St. Louis parish he attended as a kid. Many priests are known for mild manners and solemnity. But this priest would turn red in the face, raging from the pulpit about the racial conflict tearing the country apart. And when my dad brought up the papal encyclical, and offered to write and give speeches to anyone who would listen, Father Goldammer was all ears. He would find my dad an audience.

So my dad gave these talks, mostly in church basements, and his speeches were well received. He put the message of the Populorum Progessio into his own words that went along these lines: Violence and anger and hatred aren’t the answer. Looking past racial differences is the answer. We are all brothers and sisters of the same family, the family of God’s people. Dad felt like one of the big brothers of that family. And it felt great. He had found his cadence in the great march for civil rights.

Just as the police murder of George Floyd would ignite the flames of protest in 2020, so too did the assassination of Martin Luther King, Jr. in 1968. Then, as now, the battle over civil rights became an intense topic of national conversation. Which side you were on, and how vocal you were about it, could make a difference in how others, including your employer, saw you.

There was a presidential election in 1968 that turned out to be a memorable one. Although he had won by a landslide in 1964, President Lyndon Johnson, with the yoke of the Vietnam War around his neck, decided not to run for re-election. The Democratic nomination went to Vice President and former Minnesota Senator Hubert Humphrey. Our family liked this guy a lot. Nicknamed the Happy Warrior, this architect of the Peace Corp, before becoming Johnson’s VP, was the Democratic Whip in the US Senate, a position Senator Dick Durbin, Dad’s brother, has filled since 2005. Our family likes this guy quite a lot, too.

Johnson’s withdrawal from the race also opened the door for the reincarnation of Richard Nixon’s political life after having lost to John F. Kennedy in 1960. He won the 1968 Republican nomination. Unlike most presidential races, this one featured a viable third party candidate in the segregationist George Wallace. He ran as an independent. Most people wrote off the Alabama governor as an avowed racist, given his attempts to block Black children from entering newly integrated schools.

In a mock election at Grant School, the Durbin kids old enough to participate all voted for Hubert Humphrey. They were promptly labeled “n-word lovers” by their classmates. And on the big sign at the front of our South Bountiful Heights subdivision, someone used Wallace bumper stickers to rename it “Wallace” Heights.

“Don’t worry,” Mom assured us all back at home. “If George Wallace becomes president then we’re all moving to Canada. Or maybe New Zealand.”

Some of our neighbors made a point of letting us know how they felt about our views. One morning we found our house had been egged and spray-painted. The twisting patterns were all over our fake window shutters and front porch railings—you can see them in the photo at the end of this post. Dad decided not to let it bother him, and to let the vandals know by keeping those shutters and porch rails just the way they were.

He responded differently to the next message that came our way. Some “yahoos,” as Dad called them, began driving their cars across our yard at night, leaving deep trenches in the grass. He drove a bunch of us down to the nearby Haydite mines, where I think they made cinderblocks. There, we loaded our Ford station wagon with massive, fossil-laden stones. It’s a miracle the car’s suspension didn’t snap on the drive home. I can still recall the sparks flying as the bottom of our lumbering car scraped the asphalt of Old Lincoln Trail. We put those stones along the curb of house and the yahoos never came back.

Meanwhile, Dad got pretty good at giving those speeches and his words were mostly well received. When he spoke of church leaders having a responsibility in the matter of racial justice, however, word got back to his new church St. Albert’s in Fairview. And he got a message from fellow members of the Diocesan Council of Catholic Men. They took him aside one night after a meeting. The head priest at St. Albert’s and even the local bishop, they told him, thought Bill Durbin was being arrogant. His DCC buddies asked him to stop. Knowing he was being heard by Church leadership only made my dad want to speak out more. He felt he was accomplishing something, and told these guys, in so many words, to go pee up a rope. They weren’t going to shut him up. But something else soon would.

One night, as Dad entered the basement of St. Joseph’s Church to give a speech, he saw something he hadn’t seen at one of these events before: A film crew. And, beside them, some colleagues from the Aeronautical Charts and Information Center, the Defense Department agency in St. Louis where Dad worked. What the hell?

Dad’s speech was preceded by one from another activist priest, Father Geneseo, who was himself on thin ice with Church leadership. But the crew didn’t film him. They waited for Dad. When he approached the pulpit, they turned on their lights and raised a microphone as the film camera started to whir. When he was done, the crew packed up and left. They didn’t stay for the next speaker. They only filmed Bill Durbin.

Then all kinds of questions went through my dad’s head: Who brought the film crew? What kind of word would go back to his supervisors? Would they make some kind of report to the government investigators who kept an eye on the personal lives of the men working on their secret projects making maps for the military? Would he have some explaining to do when he was next up for promotion? Would he even be up for promotion? He decided not to find out. The possible answers to any of these questions were too painful to bear.

Until that night at St. Joseph’s, Bill Durbin hadn’t thought anyone at ACIC would care what he spoke about, as long as he wasn’t revealing classified information, which of course he never did. He was making a steady income for the first time in his life, serving as a diligent civil servant in the midst of the Cold War. It had been years since he or Mom went to relatives to borrow a few dollars until payday. But now, with the government apparently recording his activities, he felt that meager financial security was at risk.

Dad told Father Goldammer there would be no more speeches. He also called up the head of the Diocesan Council of Catholic Men to tell him he had reconsidered their advice. They didn’t have to worry anymore, Dad told the guy, because there would be no more speeches. The guy thanked him.

Then he quit the Diocesan Council of Catholic Men and, keeping his word, stopped giving speeches. And, at last, he painted those shutters on our front windows. The march for civil rights would have to continue without Bill Durbin, at least outside the house. But the education of his children would continue. And it included one field trip I’ll never forget.

Although typically considered a northern state, the longitudinal expanse of Illinois puts it in both the North and South. For the better part of the 20th century, while the progressive metropolis of Chicago at its northern edge was chock full of racially tolerant whites, the little town of Cairo at the other end had scant few. Pronounced KAY-ro like the syrup (not KY-ro like its namesake city in Egypt) things happened in that Illinois town that one might think in those days only happened in places like Alabama or Mississippi.

According to newspaper accounts, in July 1967, 19-year-old Private Robert Hunt, a Black soldier home on leave in Cairo, was stopped by the police for a malfunctioning taillight. A few hours later he was dead. His battered body lay crumpled on the floor of a holding cell in the police station, where the cops later told the FBI the disturbed AWOL had hung himself with his t-shirt. The FBI agreed and decided not to investigate, despite the bruises, despite no indication Private Hunt was AWOL, and despite a mesh ceiling on the holding cell that could not possibly hold the weight of a grown man. In any earlier year, things might have ended there. But this was 1967. This time the Black community rose up in anger. They smashed windows, burned buildings to the ground, and vowed to continue until things changed.

A few years later, when Bill Durbin drove a station wagon full of us kids past the cotton fields on its outskirts and into the town of Cairo, things hadn’t changed much. White residents had formed a group known as the White Hats, for the white construction helmets they wore while patrolling the city. White civil rights activists joined up with the NAACP and local Black residents to form the Cairo United Front. One of those activists was Father Bernard Bodewes, once a priest at St. Albert’s in Fairview who had relocated to Cairo to join the battle. Dad had called Father Bodewes and asked to bring his kids down for a visit. Dad wanted us to see firsthand that some of the riots and violence we read about in the papers and seen on TV happened just a few hours drive from where we lived.

Father Bodewes pointed to the wall of his dining room. “See those holes? Who wants to look through and tell me what they see?”

We took turns peering through some of the half dozen or so holes in the wall, each big enough to slide a hot dog through. “I see a flag pole,” I said as I peered outside and felt a slight wind on my face coming through the hole.

“That’s the police station,” said Father Bodewes.

As it dawned on us these holes were from bullets fired from the direction of the police station, maybe by police themselves, Dad suggested we move away from the wall and into the living room. There, Father Bodewes shared some of what was going on in Cairo. I didn’t follow all of it, but I could tell Dad really thought the world of this guy. Dad might have stopped speaking out himself on behalf of civil rights, but I think he wanted us to know someone who was still speaking. At least for the time being.

Father Bodewes was booted from the Catholic Church in 1971. His excommunication was ostensibly the result of his taking the diocese to court in an attempt to restore his paycheck. The Church hadn’t paid his $700 monthly salary in nearly a year, cutting him off when he refused to break with the Cairo United Front. Apparently, these disciples of Jesus Christ were unimpressed by a priest literally putting his life on the line in the service of people in need. Bernard Bodewes died in 2013.

On the way out of Cairo, Dad drove us through parts of town that by comparison made even East St. Louis look good. The streets were nearly deserted and it looked like the trash hadn’t been picked up in years. Dad slowed down as we passed the remains of buildings that had been burned down. Some were nothing but charred wood piles, or brick boxes with no tops and filled with blackened debris. The half dozen Durbin kids packed into the car didn’t have much to say.

The long drive home was a quiet one.

I called Mom while preparing this post. “I suppose some people just need other people to look down on,” she said. She remembers exactly where the so-called color lines of the East St. Louis were drawn—Blacks had to stay south of Louisiana Boulevard, Latinos in Washington Park—and laments that we’re still struggling with such things. “The worst four-letter word we have is ‘hate’,” she told me, before quickly attributing the quote to Eleanor Roosevelt, reminding me that I learned the sin of plagiarism from my parents too.

We lost Dad to heart disease in 2001. After nearly twenty years, I still think of not just his message but the messenger himself. He loved his family, his country, his faith, and the ideals of fairness and justice. And he worked hard every day in service to all that he loved. Would that I might follow in such footsteps.

I think about how Dad would view the Black Lives Matter movement today, a half century after those turbulent 1960s. I think about our trip to Cairo, his speeches, those shutters—fresh memories come to mind daily.

I think too about 19-year-old Robert Hunt, that young Black man on leave from serving his country, who died back in 1967 at the hands of the police. His life sure mattered.

#####

Bill and Lorraine Durbin with some of their kids and visiting friends. That’s me off to the right.

Something in my head

One weekend nearly three years ago, something weird started going on inside my head. The chief symptom of my ailment was vertigo, which came and went spontaneously, in episodes typically lasting well under a minute. Some of these dizzy spells were barely noticeable. Some were accompanied by sudden deafness in my left ear, ringing on the right, and profuse sweating. Some sent me crumpling to the ground in spinning agony.

My only comfort was in thinking my symptoms were so striking, and so consistent, that my doctor would pinpoint their cause in no time. Man was I wrong about that.

In October 2017 I was 54 years old and divorced, with two kids off in college, and single as a dollar. To improve my chances on the dating front I decided to get serious about losing the few extra pounds around my middle. So, one Monday I hatched a plan to go two solid weeks living the healthiest life possible. I would choose meals with extra care, get lots of sleep, and double my running and hiking routine. I dubbed it my “fitness fortnight.” By Friday, my thrice-weekly run had grown from three miles to six, and on days between running I took long hikes through the woods behind my house at the fastest clip I could muster. It felt great.

One Saturday morning, sitting at my writing desk and looking out at the birds at my feeder, I felt as if something were gently squeezing my brain. It lasted just a few seconds. An hour or so later it happened again, feeling more intense this time but still lasting no more than half a minute. I had one more spell that day, again out of the blue and slightly more intense than the last.

The next morning, I was just waking from a good night’s rest when I heard a whooshing sound I attributed to the dishwasher running in the kitchen downstairs. But then I remembered just emptying it the day before. It must be something outside the house, I figured. When I heard it again later that day I went to the window. There was nothing there. That’s when I realized the whooshes were whooshing at a familiar tempo. I pressed a hand to my neck and realized the whooshing was tracking my pulse perfectly. I was hearing my blood.

I decided to see my doctor first thing Monday morning. I also decided, reluctantly, to hold off on running. My fitness fortnight had become a fitness four-night.  

My regular doctor was out. His replacement was not the least bit alarmed. “I get two new vertigo patients a week at your age,” he told me. I hadn’t even thought of this as vertigo, as so far I hadn’t experienced any spinning, only these brain-squeezes. But apparently there’s such a thing as non-spinning vertigo. And what about the whooshing, I asked? “Let’s work on the vertigo,” he said, then prescribed a drug called meclizine.

I had had seven spells by then. That evening I had my eighth, while standing in my kitchen making dinner, and this one came with a new feature. When my brain squeeze came on, I held onto the edge of the sink to steady myself. It wasn’t enough. Suddenly I was unable to remain standing, as if my brain had shut off all instructions to the muscles that allow hominids to stand upright. I dropped to the floor.

I remember once playing with a toy doll made of hollow wooden limbs held together by wires. When you pressed a button at its base, the wires went slack, causing the little man to crumple into a pile of body parts. The experience in my kitchen that night was just like that. Something pressed that button. I would later learn these are called drop attacks, and the one that night would be the first of many.

I decided to work from home the next day, fearful of having a severe episode while driving to my office some 20 miles away. I had another episode that day, and another at night. That one woke me from a deep, dreamy sleep and I had to sit up and steady myself until it passed.

Early the next morning, back at my writing desk, I noticed the birds outside my open screen door went suddenly quiet. Turning to look, I realized my hearing had gone out in my left ear—just as my brain felt the familiar squeeze and, this time, for the first time, the world began to spin. It was textbook vertigo. I laid both palms on the desk and looked out the window as a great wave of nausea came on. I was on the verge of vomiting, sucking in that one last deep breath as my stomach prepared to spew forth its contents, when the spinning stopped and my hearing came back. As I exhaled, I noticed beads of sweat on the hairs up and down on my forearm and shivered as a light wind blew across my wet skin. I was so drenched I had to change my shirt.

I called my mom, who had had some experience with vertigo, and learned that her doctor had also prescribed meclizine. But she had never experienced episodes quite like mine. She recommended I begin logging the episodes, in order to have solid data to share with my doctors, advice I began following right away.

The meclizine was not helping. I called my doctor’s office to get an appointment with an ENT, and got one, but would need to wait four weeks. With each episode worse than the last, I was pretty sure I’d be in the ER way before then. Fortunately, the next episode was slightly less intense. And the one after that was even milder. I decided I could wait.

I went two days with only the mildest of spells and so began driving to work again. The whooshing episodes also subsided. I was hearing my pulse only once or twice a day, for five or ten minutes at a time. Interestingly, the whooshing spells never coincided with the dizzy spells. They were on their own random cycle.

___

Ten days after my first episode, sitting at my desk at the bank where I work, I heard a ringing on the right side of my head. Then my hearing went out in my left ear and the world began to spin. It spun for less than a minute, not as badly as it had before, but when it stopped, I again noticed my forearms wet with sweat. I made an appointment to see my regular physician the next day.

“You need a brain scan right now.” My doctor’s face had gone slack when I described what was going on. His alarm, though, was oddly reassuring. I’ve been seeing my primary care physician for more than a decade and was glad that he too saw this as being something truly weird. Other than an argument over how to pronounce tinnitus (I’d always heard it tin-EYE-tus and he insisted it was TIN-i-tus, which I think sounds silly) my doc and I were on the same page.

While waiting for the results of the emergency MRI of my head, I went online to see what my doctor might be worried about. It didn’t take long to find a condition whose symptoms lined up with mine, a non-cancerous tumor called an acoustic neuroma. This was it, I thought. It was an awful thing to have, but weirdly I took some comfort in knowing what was probably going on. My mind turned to my son and daughter and how I would break the news, explain the condition, and assure them I would be fine once the tumor was removed.

I learned by email that the MRI came back negative. There was no tumor or other sign of anything unusual. My first reaction was disappointment at having to go back to square one. Then I remembered that learning one does not have a brain tumor is actually not a bad thing.

___

Thus began something of an odyssey, which consisted mostly of waiting for appointments with specialists of various stripes, all the while experiencing random waves of vertigo of varying intensity. It was like a gremlin had taken up quarters in my head, tormenting me at random moments of his choosing. Sometimes he’d sleep quietly for two or three days, then come out 30 times or more in a single day.

My first stop was the otolaryngology or ENT department at Duke Hospital where, over the course of several weeks, a team of ENTs ordered a hearing test, a test of the vestibular functions of my inner ear, additional MRIs, and a CT scan of my brain. Between appointments I began scouring the internet to learn about my hearing and vestibular system, and basically to see what the hell might be going on.

The space between your earlobes and brainstem is home to a remarkable bit of machinery. Consider just the semi-circular canals, three hollow rings positioned on opposing axes like the rings of a gyroscope and filled with tiny crystals floating in liquid. Moving your head in any direction disrupts the flow of those liquids, disruptions transmitted to your brain by the vestibulocochlear nerve. As its name implies, this nerve, also known as the eighth cranial nerve, also transmits signals produced by air pressing on your cochlea, or eardrum. The mechanisms are magnificent. And as a software engineer I can only marvel at the complexity of the “code” inside the brain that has to interpret the data coming in via this key pipeline of information on either side of our heads. Wrapped all around the hearing and vestibular organs is a web of blood vessels large and small, equally marvelous it its ability to get blood in and out of impossibly compact nooks and crannies.

There are any number of things that can go wrong in this part of the head, all of which would need to be considered in my case. Doctors call this process of elimination differential diagnosis. So far, only the tumor had been struck off my list. That left things like Benign Positional Vertigo (whose cause has to do with those canal crystals not moving around as they should) and Meneire’s Disease (an inner-ear disorder that can cause random vertigo spells like mine). To be considered on the vascular front were things like aneurysms (blood bubbles), stroke (blood clots or bleeding), stenoses (vessel narrowing), fistulas (abnormal connections between arteries and veins), and dissections (blood vessel tears). The whooshing, I learned, was known as pulsatile tinnitus.

When I asked my senior-most ENT about a condition I had run across called vestibular paroxysmia (VP) caused by a blood vessel compressing the vestibulocochlear nerve, and whose symptoms seemed to line up with mine, he responded as if I’d insulted him. “I don’t believe in that,” he snapped. His umbrage made me feel like I’d just suggested voodoo. He hadn’t seen it in 25 years of practice, he continued, and when I pressed him for more he said if such a condition were real it would cause much more severe hearing loss than what I was reporting. He clearly knew what he was talking about. I decided to let the doctors do the diagnosing.

___

One of the doctors suspected a vestibular migraine, whose typical symptoms include dizzy spells, and suggested I go on a migraine diet for two weeks. But removing nuts, cheeses, processed foods, soy products, and olives from my diet had no apparent effect. Nor did abstaining from alcohol. And thank God for that.   

The battery of testing ordered by the ENTs gave no clue as to what was going on. My hearing was fine, except for a slight deafness on my right side, which I’d had since I was a teenager, when a firecracker went off in my right hand after waiting too long to throw it. My vestibular organs all seemed to be functioning properly. I didn’t qualify for Meniere’s, whose spells need to last 20 minutes or more, whereas mine typically lasted 15 or 20 seconds. And none of the brain scans—not the MRI, MRA, MRV, nor CT—showed signs of a dissection or other obvious vascular disorder. One scan did find an aneurism, or blood bubble, deep inside my brain. But its size (thankfully quite small) and location ruled it out as a culprit.

The apparent lack of vascular disorder baffled me for two reasons. One, pulsatile tinnitus by definition is due to blood flowing where it shouldn’t, i.e., where your cochlea can pick it up. Two, my symptoms came on after the most intensive cardiovascular workout of my life, with long runs or fast hikes every day. Rather stupidly, in hindsight, I had clearly let my heart rate go way into a danger zone. Wasn’t it reasonable to assume I had torn some vessel up there? Perhaps. But the testing showed no sign of it.

The ENTs concluded that a central nervous system disorder should be considered next and referred me to neurology. And the referring doctor told me to expect the neurologists to order a lumbar puncture, or spinal tap, which quickly brought two words to mind: oh shit. If there was one medical procedure I had feared more than any other it was a spinal tap. Fortunately, the very first neurologist I went to saw no reasons to indicate a central nervous system disorder. “You don’t need a lumbar puncture,” he told me. I nearly hugged the guy.

He still suspected a vascular issue and referred me to a neurologist who specializes in those. When I told her about another symptom that had come on a few weeks before onset, a stiff neck whenever I ran, she ordered MRIs of my neck to expand the search for a vascular disorder in that area. Nothing.

___

Meanwhile the episodes continued. In April, I crumpled to the ground after drinking one beer at the Ponysaurus Brewing Company in Durham, where the other patrons no doubt assumed I had had way more than one. In May, waiting in baggage claim at the airport, I noticed the loud ringing on my right side, which I had learned by then signaled the onset of a drop attack. I headed for a bench not ten feet away but didn’t make it. I dropped like a rock onto the cold, tile floor. Leaving Duke’s imaging facility one day, passing by the cancer center, I put both hands on its stone exterior when the ringing began, thinking wrongly that I could remain standing. A second later I was on the ground, rehearsing what I would say to the passersby who I knew would soon be coming to assist. Actually none did.

One thing I noticed about my drop attacks is that my body seemed to always fall to the left. Wanting to confirm this, one day I hurried to my bedroom when I felt one coming on. Standing next to my bed and a safe distance from any hard furniture, when this one came on I offered no resistance. Sure enough, I fell not slightly to my port side but directly, as if someone twice my size were standing to my right and pushing with gusto, their invisible hand toppling me right over.

It had been seven months since this gremlin made a home of my head. By mid-April 2018, I had logged 853 episodes, including 28 drop attacks—one per week, on average.

Duke Hospital is a world-class medical facility with a well-deserved reputation for superior medical care, but it appeared my condition had them stumped. I decided to look elsewhere for help and started, of all places, on Facebook. There I found a group of pulsatile tinnitus sufferers and began looking for names of doctors in their posts. Because my PT had begun on nearly the same day as the vertigo, I figured there was a good chance they had the same underlying cause. If I could diagnose the PT, my thinking went, I might simultaneously diagnose the vertigo.

I went to see two doctors who specialize in pulsatile tinnitus, one in New York and one in Baltimore. Looking at my scans, the New York doctor, a neurointerventional radiologist, saw some indication of stenosis but could not say that was causing my symptoms. The Baltimore doctor was equally baffled, until the day after the appointment when he placed a phone call that changed everything.

___

I was driving to work one morning and saw a call coming in from Baltimore. The ENT had woken up that morning with a new idea, he told me with a hint of pride. I was just thrilled he took the time to call. He suggested my symptoms might be due to something called intracranial hypotension due to a cerebral spinal fluid leak. I thanked him profusely and pulled over for a quick bit of googling. The condition, I learned, would seem to explain every one of my symptoms.

I was ecstatic. After seven months of riding this disturbing roller coaster, finally a doctor had the combination of curiosity and caring to point me to the most promising path I’d yet encountered. Incredibly, one of the three major centers in the US for treating CSF leaks, I learned, is none other than Duke Hospital. Why my Duke ENTs, neurologists, and radiologists did not think of sending me down the hall to their CSF colleagues I cannot say. In any event, I went back to Duke.

After reading everything I could find on CSF leaks, a plausible story nearly wrote itself. It was plausible to me, anyway, and it went like this: Our brains are suspended in a bath of clear liquid that extends down our spinal column. On one of my intense runs back in October, I had caused a tear that CSF was leaking out of, causing my brain to sag onto my vestibulocochlear nerve, in turn triggering either the pulsatile tinnitus or vertigo, depending on where it sagged. The whooshing was the result of something called the Venturi effect when blood is forced to flow through a constricted space—just as a running water hose hisses when you kink it.

Two things supported my story. First was the fact that from time to time, with no symptoms of a cold, I would find a thin clear fluid dripping from my nose—I read this was a common symptom. I also decided to test the saggy brain theory. One day when I felt the pulsatile tinnitus coming on, I got down on all fours, hunched up my hiny and let my head dangle upside down. The whooshing stopped. When I stood up, the whooshing came back. I repeated this test dozens of times with same result.

I was a lead-pipe cinch, quod erat demonstrandum, and a no fucking brainer: my spinal fluid was leaking.

Waiting three months for testing to confirm a CSF leak (I’d become accustomed to waits of weeks or months between stops on my journey to diagnosis) I read that caffeine was known to reduce symptoms of intracranial hypotension. I happily increased my morning consumption from four cups to six. A lifelong coffee drinker, this was a silver lining, albeit slim, to the gray cloud of dread that hung over me waiting for the test they would use to detect a CSF leak:  a spinal tap, while lying on the bed of a CT scanner, to inject dye into my spinal fluid, dye that would show up on the CT scans when it leaked out.

It turned out to be not the least bit painful. Just a bit of pressure against my spine. “Do want to see what I see?” asked the friendly technician who had patiently explained everything beforehand, setting me at complete ease. “Sure!” He positioned the CT screen so I could watch as a needle entered the space between the bones of my spine. So the CT myelogram turned out to be rather cool. But it did not show any signs of a CSF.

“I know it’s disappointing to not know what’s going on,” the doctor told me over the phone a few days later. “But trust me, you don’t want to have a CSF leak.”

How could this be? I had fallen victim to something called confirmation bias, where you focus on evidence that supports a hypothesis you already believe to be true. It was the same as when I was convinced I had a tumor. So once again, a year into this odyssey, I went back to a familiar place: square one.

___

Until this time, my episodes of vertigo had come on randomly throughout the day. But now I began noticing a pattern. They tended to occur between 2:00 and 3:00 in the afternoon, when my recently increased morning caffeine infusion was starting to wear off. Might there be a connection? Over the course of ten days I switched to decaf, gradually mixing it into my regular coffee. It took all the will power I could muster. But the result was striking.

I went from having 50 or more episodes per week to having just a few. And none were severe. I missed the effect of fully caffeinated coffee but still enjoyed a lesser effect, from the residual caffeine in decaf, but was elated that my symptoms were now easily tolerable. A week went by with almost no episodes. Then two. Then four.

Still wanting an explanation, I went to see a neurologist in Chicago whose name I had seen on dozens of research papers on hearing and dizziness disorders. He examined my growing collection of images and ordered an all new battery of tests of my hearing and vestibular functions. Sitting with me in his office after several hours of testing, the friendly doctor (who looked remarkably like Steve Martin) patiently summarized nearly a dozen different conditions that could potentially explain at least some of my symptoms before choosing for his diagnosis the very condition my Duke ENT said did not exist: vestibular paroxysmia.

The cause of VP, also known as microvascular compression syndrome (MCS), is not known. It may be due to a weakening of the myelin sheath surrounding the vestibulocochlear nerve, which makes it susceptible to interference by a blood vessel running beside it. Such interference triggers sudden episodes, or paroxysms, of hearing loss, vertigo, and imbalance.  The impact of caffeine abstention made sense to my Chicago doctor given its well-known effects on both nerves and blood vessels in the head. He suggested that I stay off caffeine as long as that helped, and if the symptoms returned, there were drugs available known to help relieve VP symptoms.

I went back to Duke and found a neurologist who did believe in VP and who in fact was treating other patients for the disorder. But he didn’t think I had it. He told me it did not cause hearing loss, the exact opposite opinion of the Duke ENT who said it would come with severe hearing loss.

Three specialists were saying three different things about this vestibular paroxysmia: You have it, you don’t have it, and it doesn’t exist. I decided to just accept the uncertainty of my situation and get on with life. The only thing I knew for sure was that limiting myself to decaf seemed to minimize my symptoms to the point of irrelevance. I brushed off the two or three mild head squeezes per week, enjoyed my decaf, and learned to tune out the occasional whooshing in my ear.

___

Then, six months after my trip to Chicago, I was sitting at my desk at work when one of the mild dizzy spells came on. It wasn’t too bad, but something told me to head to the nurse’s office where I work. It was lasting a bit longer than usual. As I sat on the examining table explaining my history, the spinning accelerated and suddenly I could no longer sit upright. I rolled over in agony—the spinning had never been this bad—and began vomiting. It was the first time I threw up since this whole thing began.

The spinning and vomiting subsided for ten minutes or so, then came back. I texted my friend Elisabeth who rushed over and drove me to the Duke ER. The waves continued, thankfully growing less intense each time. Until that day, no episode had lasted more than a minute. This one lasted nearly four hours. The ER docs ordered a CT scan, reviewed my records, and sent me home at 6:30 the next morning. As expected, they had no idea what was going on.

At a follow-up appointment my Duke neurologist prescribed carbamazepine, known to be effective in treating vestibular paroxysmia, but I decided to try something else first. Learning that “decaffeinated” coffee can contain up to 30% of the caffeine of regular coffee (I think “low caf” is a better name), I went entirely caffeine-free. No decaf, no caffeinated teas, and no chocolate beyond the occasional nibble. For the next six months I still heard whooshing from time to time, but not a single episode of vertigo. Not even a mild one. The carbamazepine went into the trash.

I was symptom free. My gremlin, it appeared, loved coffee. And whenever I felt the urge to make myself a French Roast pour-over, or dash into the nearest coffee shop for a latte, I just thought back to that marathon night in the ER. Still, even still, I wondered if I might some day recaffeinate.

One day, months later, googling yet again for all the neurovascular disorders with symptoms like mine, I stumbled upon one with the weirdest name yet: secondary endolymphatic hydrops. Its symptoms are episodic vertigo and intermittent hearing loss that come on a response to some event or condition. When I read it might have something to do with the chemical balance of the fluid inside the inner ear, I got to thinking about the apparent dehydration effect of caffeine. There’s disagreement over just how dehydrating caffeine really is, but what if I was dehydrating just enough to mess with the chemistry of my inner ear?

I started drinking more water. Each morning I filled my one-liter Nalgene and made a point of emptying it at least once a day. After a week or so I treated myself to a decaf. Things were all good that day. And the day after that. Over the course of about a month, I worked my way up to a full cup of coffee every morning, always careful to empty the Nalgene at least once a day.

Fact one: I’ve been symptom free for six months. Fact two: I drink coffee, and plenty of water, every day. God only knows if there’s a connection between those two facts.

Was secondary endolymphatic hydrops the cause of all this bother? I don’t know. But learning about it, and thinking about what’s known about it, got me thinking about drinking more water and when I did so I could drink coffee again without fear of falling down. That’s all I can say for sure.

I still think I damaged something in my head during my ill-advised fitness fortnight, the extreme workout that immediately preceded the onset of symptoms. The coincidence is just too striking for me to believe otherwise. And if that’s the case, then maybe Mother Nature has now healed whatever I did. Or maybe, or maybe. Dot. Dot. Dot.

Truth is I don’t expect to ever know the real story. And I’m fine with that. These bodies of ours, I have come to learn, are complicated as hell. I’m just grateful as hell mine is working properly again.

Grandma is a seven-letter word

I learned to play Scrabble from a grandmother who didn’t cut kids any slack when it came to this game she loved. When I finally learned to play at her level, it felt great. Until it didn’t.

I was eight years old when I first played Scrabble with Grandma and lost that game by more than a hundred points. “Don’t be discouraged, Mike. It’s all in the tiles you draw. Sometimes you draw good ones and sometimes all you get are the stinkers.” For the next decade or so she avoided the stinkers with amazing regularity. Grandma was an awesome Scrabble player who played to win no matter how young her opponent. She worked those little wooden tiles with the skill of a surgeon and confidence of a concert pianist. She would extend my DOG into DOGMATIC, my CAT into CATHARTIC. Questionable words were challenged before the last tile could hit the board. And she was always so certain whether or not a word was in the dictionary, I would wonder if she had it memorized.

Few of my siblings would come back for a second game. But I was always up for a game of Scrabble at Grandma’s house next door and she was always up for a win. Part of what brought me back was the simple joy of observing talent. Grandma was skillful at many things—gardening, knitting, cooking—but her mastery of Scrabble impressed me most of all. And while many good people surrounded me in my childhood, nobody else struck me as being an expert as she did. Going back for another game was like going back to the theater or concert hall or big league ballpark. We enjoy watching talent at work and she had plenty.

It was more than Grandma’s performance that kept me coming back. Something told me that Scrabble was something I could learn, that one day I might impress others the way she so impressed me, if only I kept working at it. And as Grandma’s inveterate sparring partner I got quite a workout. I learned two-letter words with virtually no relevance outside the game, words like EM and EN and AA. I learned the word QUEUE at a comparatively young age, as well as what it means to GIRD your loins, to DUN a debtor, and to DRUB your opponent. I learned Scrabble strategy: Always aim for the pink squares that double your word score. Never play a word that puts your opponent within reach of a red triple-word square. And never, ever play the letter U early in the game—it’s always good to have one if you draw the Q.

What drew Grandma to Scrabble? Its demand for intellect and knowledge had something to do with it. As an adult she had a penchant for developing herself intellectually—by enrolling in business colleges, reading voraciously, frequenting museums. She considered knowledge the only permanent possession. “They can take everything away from you, Mike, your house, your money. But nobody can take away what you know.” Grandma grew up at the hands of a monster of a father, in an unenviable immigrant household where possessions were fleeting. She watched her father destroy her few and favorite trinkets in fits of rage. She came home from school one day to an empty house—her father had moved the family and not bothered to tell her. Is it any wonder she always played Scrabble to win? Was it not an opportunity to show off the knowledge in which she had so much pride?

As happens to one who studies with a master, Grandma’s skill at Scrabble did eventually begin to rub off on me. I started using words like EM and AA myself. I was careful to save any U until the difficult Q had been played, and if a word might put her within reach of a triple word square I wouldn’t play it—no matter how many points it was worth. I began losing by reasonable margins, then by just a point or two. Then, when I was in high school, I won my very first game of Scrabble with Grandma.

It was a heady achievement that left me in something like a state of shock. I don’t remember details of the game but I do remember wondering how she might react. Would she check the math on the score sheet? Attribute the win to a dubious word that should have been challenged? She did neither. “Nice game, Mike. Those were some clever words you played.” Grandma was a good sport about losing to me, attributing only her own wins to luck-of-the-draw and never my own.

My skills continued to improve over time and before long I was winning as many games as was she. Our games continued even after I moved half a continent away, when a Scrabble match became a mutual expectation of my every visit. My mother became our standard third player. Mom’s vocabulary was every bit as good as Grandma’s and mine but she didn’t give a whit for strategy. For instance, she would not hesitate to place a word that gave a triple-word scoring opportunity to the next player. This tendency did not go unnoticed by Grandma and me. As play moves clockwise in Scrabble, we developed a shameless ritual prior to each game in which we would jockey—oh so innocently—for the seat to Mom’s left, where those valuable openings would be ours.

It often amazes me I have any talent at all for Scrabble because it requires something I don’t have: a good memory. Memory in general has never been my strong suit. (Have I told you this before? I have? Are you certain?) But somehow I do remember words, especially interesting ones. Did you know there is a word abecedarian? It’s a person learning something, such as the alphabet. How about navvy? That’s a laborer on a canal or railroad, short for navigator in a sense that word is no longer used. You may know these words, of course, and wonder how one who fancies himself a writer finds them extraordinary. That’s okay. It doesn’t bother me that I’m the last person to learn a word, I still enjoy learning it.

Grandma kept up her yen for Scrabble into her older years, even after the shaking hands of Parkinson’s disease made it difficult to place those little wooden tiles on the slippery board. More than once a tiny jerk of a finger would send every word on the board askew as if a small earthquake had struck, requiring Mom or me to tidy things up. As her body slowed with age, though, her mind stayed sharp. I once played the word FAX and Grandma immediately threatened a challenge. I explained what a fax machine was, which at the time could be found in any workplace but was completely unknown to Grandma. “Is it in the dictionary?” she asked. “Not our old dictionaries, but it’s a word used all the time. It’s actually short for facsimile.” “Then it’s an abbreviation,” she pointed out, “and abbreviations aren’t allowed.” I removed the word from the board.

Midway during one game my outlook changed forever. On my tray were the letters S-E-E-I-G-V-T. On the board was an open S. As long as the spot stayed open until my turn, I could empty my tray and make the word VESTIGES. It would be a seven-letter play for a fifty-point bonus and certain victory in a game I was already winning.

As I waited my turn, I began browsing the old score sheets we kept in the Scrabble box. There were ten or fifteen at least. Before long a startling fact lay in front of me: I had won every single one of those games. I suddenly felt a lump in my throat so big I could hardly swallow. A sense of arrogance swelled deep inside me, mixed with a feeling of selfishness. Grandma and Mom could no longer be playing only for their own enjoyment, I realized, they were playing in large part for mine, knowing I loved the game, knowing I especially loved to win it.

As I peered across the board, my eyes opened for the first time to see that Grandma was no longer the player she once was. Her right hand shook so uncontrollably she would hold it tight with her left, cursing it. She had a difficult time just concentrating on the game. It had been years since she played a seven-letter word and the words she now played rarely returned more than twenty points.

It was my turn. The space remained open, beckoning my seven-letter play. I paused and waited, pretending to search the board for openings. “Can’t you play anything?” Mom asked. I stopped stalling and made up my mind. Using only six of my seven tiles, I played the word VESTIGE and added a handful of points to my score. The final S stayed in my tray. There would be no fifty-point bonus. “The board’s really filling up,” I said. Grandma set her tiles on the edge of the board, not even trying to place them. Mom slid Grandma’s word into position.

Before long we added up the score. Grandma won by eleven points. “Nice game, Grandma. Those were some clever words you played.” Her reply was one I hadn’t heard in years. “It’s all in the tiles you draw. Sometimes you draw good ones and sometimes all you get are the stinkers.”

That was our last game. Grandma died eight weeks later at the age of 87, when ailments she’d been battling for more than four decades finally won their match—or, perhaps, were allowed to win. I had seen her in the hospital the day before she died, passing through town on my way out of the country on business. We exchanged regrets that we hadn’t played a game of Scrabble during that visit and ended our last conversation with a vow to play on my next one. I was hardly over jet lag when my wife called me in Paris with the news. I flew back early to be with family for the funeral. Like most everyone else there, it was an occasion to reflect upon all I had learned from Grandma and how much she influenced the person I had become. And of course I thought about our Scrabble, especially that last game. Did I betray all she taught me by throwing the game? Would she be angry had she known? I don’t know. In fact, can I be certain she never threw a game for me? That first win—was it all my doing? No matter. I’m glad I let her win that last game. In the moments afterward, as we poured the tiles off the board and into their bag, as Grandma placed her letter tray back in the old maroon Scrabble box for the last time, there was a priceless glint of satisfaction in her eye. Or maybe it was in my own. At Grandma’s wake, as I laid my eyes upon her, I slipped a small memento into her casket. A Scrabble tile. The letter U, of course. It’s always good to have one if you draw that Q.