Chapter One

It all started with a horseshoe.

Dear Dr. Tracey,

My dad gave me this when I was 19. No father should have to be in the position to buy one of these for his teenage daughter, but mine was, and I remember when he came up the sidewalk to our house, holding it, and holding himself together when he handed it to me. 

Now, I want you to have it — I want it to be there as a daily reminder that I no longer need it and I’ll never need it again — and it’s all because of you. 

You have given me my life and my future. You’ve made it possible for me to truly chase my dreams and see what my potential actually is.  I’ll never know the right words to thank you for what you’ve done for me. 

You are my hero — and you have saved me. And for the rest of my life, there isn’t a day that will ever go by where I won’t smile and think of you. 

With unending gratitude and an abundance of love,

Kelly 

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Part One

“The urge to run, the restlessness
The heart of stone I sometimes get
The things I've done for foolish pride
The me that's never satisfied
The face that's in the mirror when I don't like what I see
I guess that's just the cowboy in me.”

- Tim McGraw

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Inflammation: a localized response to fight infection or heal injury, but when overproduced, results in chronic and terminal diseases.

TNF-a: Tumor Necrosis Factor-alpha is an inflammatory protein that signals the production of inflammation to fight toxins or injury.

Monoclonal anti-TNF: The antidote to suppress the overproduction of TNF-a in the immune system.

Lab Notes:

While training to be a neurosurgeon, Dr. Kevin Tracey was treating a patient in the burn unit – an infant named Janice. Janice’s grandmother was boiling a pot of water for pasta and when she went to drain it in the sink, she tripped over Janice, not realizing she was underfoot. The boiling water scalded most of Janice’s tiny body. Over the course of the next month, she was treated with antibiotics and multiple skin graft surgeries. Right before her first birthday, they were preparing to send her home: a miracle considering what she had been through. As Dr. Tracey stood in her doorway watching a nurse feed Janice from a bottle, Janice’s eyes rolled back in her head and she went into shock. She died in Dr. Tracey’s arms.

This haunted him. She had no bacteria in her bloodstream. There was no sign of infection. He couldn’t let go of the fact that there was a missing link in basic science. So, he decided to balance his clinical rotation with research – no easy feat. Others told him he wouldn’t be able to do it and it would be impossible, but his new wife said to him, “Only I get to tell you that! Is this what you want to do? Then get up, go to work, and do it.” So, he did.

In 1985, Dr. Tracey began his research alongside Steven Lowry, Anthony Cerami, and Bruce Beutler. Across the street, Lloyd Old had recently discovered the cytokine that ended up being called TNF (tumor necrosis factor). Dr. Beutler began producing large amounts of TNF, which Dr. Tracey would transport across campus to his lab and inject unsuspecting rodents (under anesthesia). There, he realized that it wasn’t bacteria that was certain to cause septic shock – it was large amounts of TNF.

 Others questioned this – one prominent surgeon at the time asking why the immune system would create its own demise via TNF – but Dr. Tracey responded that it wasn’t the TNF itself, but the amount of TNF. 

He then went on to create the antidote – an antibody called ‘monoclonal anti-TNF’ that he and his team developed in 1986.

The result of this discovery was the creation of Remicade, Enbrel, Humira, or the other TNF-inhibitors.

The medical community didn’t believe him back then that the body’s overproduction of TNF was the cause of disease. Now, it’s undeniable. Dr. Tracey’s research has been cited so often that he is in the top .01% of cited scientists in the world.

A rare enigma indeed: a neurosurgeon who studies inflammation... the road less traveled by.

And perhaps, that has made all the difference.

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CHAPTER ONE

The Tree Stand

It all started with a horseshoe. The golden horseshoe he wore religiously on his right ring finger.

It now rests in a small jewelry box that it rarely leaves — from time to time, I take it out and put it on my index finger, feeling the curves of the horseshoe with my other hand, remembering a different time — maybe even a different life. Sometimes it feels so distant that it’s just a story we’ve told ourselves of some mythological being that never actually existed, but he did. All six-foot-seven-inches of him, tilting his neck to the side to get through doorways not built for men that are larger than life.

There are people in this world that are glue; without being given a choice in the matter, they take on the enormous responsibility of holding a family together. Sometimes they don’t even realize that they play that role, and I’m not sure whether he knew it or not, but as far as I could measure, things went to hell in a handbasket when he got sick.

Years have passed and I’ve had to emotionally distance myself from how much I miss him — even writing these words brings tears to my eyes that I’m still not quite ready to cry.

This behemoth of a man was my Uncle John. We tend to make heroes of our dead, yet with him, he truly was a force of nature — not a flaw-free one, but no heroes are. He was the judge and the jury, stubborn as hell, overly opinionated, but he taught me how to not just merely exist on this plane, but truly live. Years have passed and I’ve traveled thousands of miles in every direction across the globe, and I can attribute this to the man who taught me that we don’t get to have a say as to when our time is up, but we can decide how we spend our days up until that moment.

I’ve wondered what it would be like to sit down with my uncle as a now-adult over a cup of coffee, just for an hour — what would he say to me? What would he want me to know? In a five-dimensional world where we can travel to moments in time just as we’d travel to locations, that would be possible, but in our three-dimensional prison, it has yet to be.

In the meantime, my time travel exists only in memories.

In 1999, he went to the ER complaining of a migraine; none of us thought too much of it. The phone rang a few hours later, and I watched as my dad walked into his and my mom’s bedroom, where she was running on the treadmill. I couldn’t hear what he said to her, but I stood in the doorway, watching, waiting, feeling the energy. She stopped running immediately when he came into the room. As my dad stood at the side of the treadmill, I watched her eyes sink into his face and it was as though every muscle in her body went limp, and her face fell into her hands. My dad held her, and I quietly stood there, confused, watching my mother shatter.

“Stage IV glioblastoma” became a part of our vocabulary; those three uninvited words were unwelcomed and unforgiving. It was at nine years old that I discovered the power of words — these three words became a reckless driver on a dangerous highway, and like many that have experienced those words before and after our family can relate, we were merely along for the ride.

The doctors said that Uncle John’s brain cancer would take him within six months. Somehow, he found a way to survive for five years.

Within those five years of his battle, though, our family slowly began to crumble.

I used to run away to a tree stand. It was the place where I could feel at home and stable when life was anything but.

I grew up in the country of New Jersey. Not the Jersey Shore, not Montclair, not smoky skies or busy streets. Long, windy country roads ran through the woods near the Appalachian Mountains, glorious green fields filled with daisies and tiger lilies, pine trees and maples filling the air with their scent; it was my home. My house was on the hill looking at Sunrise Mountain, and my uncle’s farm was in the valley right behind.

There were actually three tree stands. I assume that either my Uncle John or my Poppy built them all for hunting, but by the time I got to them, they hadn’t been used for that in quite some time. Two sat at the edge of the woods, and one was deep in the woods down by the creek. One of the tree stands lined the woods and faced the Appalachians, which I loved — I would sit up there for hours and just stare at the mountains pressed up against a blue country sky, sitting against the fields where, as a little kid, I’d walk through and find skulls and bones of deer and other animals that succumbed to the coyotes. The tree stand along that particular field was relatively easy to climb up into. It had a couple of 2x4s nailed into the tree to act as a ladder, and then I just had to swing my legs up over a branch or two, and I was in.

The other that lined the woods and looked over the hayfield and Father Livolsi’s parish was much higher up, and I loved the height. There wasn’t a ton of sitting room up there, just enough for my butt, and I’d either swing my legs over the side or put them up against a branch to stretch out. I’d smoke the Virginia Slims that I stole from my mom and read poetry up there, looking over the hayfields and the farm, into the valley, and watch across the street as Father Livolsi fumbled around the parish grounds doing odd jobs here and there, always dressed in his best cassock.

The third was deep in the woods, near the creek. That was my go-to place when I really needed to run away and get lost. Definitely the most dangerous of the three to get to, I’d climb up, never looking down at all of the rocks that would surely split my head open if I had one missed step or if the wood eventually rotted. I didn’t worry about that then.

I grew up in these woods, along the edges and deep within. I swam in the creek, observed the beauty of nature, and cried. It was my safe place. It was my home. Thousands of miles and several years separate me from it now, and that makes me ache. I know that I will never live there again, I will never be able to run out the front door and down the steps, across the yard, down the road, and into the fields that have always held my peace. It’s so strange to feel such a debt to a place; I could never give back what it gave to me. All I can do is close my eyes, feel the crunching of branches and leaves under my feet, listen to the water hurry through the creek, and gaze at mountains I will not see again for a long time, and thank the universe that I had such a peaceful place to find myself when the rest of my world was loud and broken.

Towards the end of my time living there, someone else bought that section of land and posted “No Trespassing” signs. The little rebel I was, I was not about to let anyone tell me what to do, so, I, of course, trespassed. Somehow or another, they figured it out, and one of the last times that I went there, the ladder leaning against the tallest tree stand was sawed in half. I sat with it and cried. It was the end of an era, the end of safe introspection. The world was waiting, and I could no longer run away and get lost in the woods.

Years later, when my Sean and I moved back from Hawaii, against my better judgment, I drove up to that place. The highways turned into exits, the exits turned into main streets and the main streets flowed into backcountry roads. The mountains kissed the skyline, gravel kicked up into the undercarriage, and the smell of wood-burning stoves carried through my open windows.

I got closer and closer –there was Mrs. Touw’s house, now abandoned yet sitting there as though nothing had changed — I still remember going with dad to shovel her walkway and feed the two cows across the street in the small barn sitting on a swamp, and she’d come out, all 100-year-old bones of her, and pay us in oatmeal raisin cookies still warm from an old cast-iron stove as old as she was. Back in her day, she was a barrel racer and a cowgirl of legend, and in my opinion, continued to be that legend as an old woman who walked five miles round trip to town to deposit her social security check when it came in the mail. She had been gone for years and the house empty since, but the house still looked like her.

Rounding the corner and up over a couple of hills — there was the field Sean proposed to me in, right alongside the tree stand that lined the woods. There was the creek I used to swim in on July days. There’s the bridge I jumped from into the swimming hole; I remembered walking up the hill fully clothed and in my work boots, drenched, but thrilled. I slowed near my woods but didn’t dare stop to walk around; I didn’t know if I’d ever be able to leave it if I set foot there.

A tear rolled down my cheek and kissed me on the side of my lips – sometimes I forget that all of this still exists when I stay away long enough.

And there she was, sitting at the top of the hill, overlooking the mountains. I pulled up to the house that built my foundation. It had been years since I saw it; I kept my distance from it — I thought the further away I went, the less it would hurt. I went far enough away from my roots that I didn’t need to hear the echoes of cries from that house. If walls could talk, would the house tell stories of the laughter that happened there in the early years? Or would it cry, remembering the last days? Did it feel a pang run through the pipes and up the walls when the moving vans pulled in? Her front door was now painted a boring forest green. The swing that overlooked her wasn’t in the garden anymore. The basketball hoop that sat beside her, the one that I perfected my three-pointer on, was only a ghost. I looked at the tree line to the left at the bottom of the hill and remembered how much I loved looking through our picture window in the kitchen when a thunderstorm was coming in, and how the leaves would violently fold upwards toward the sky to let us know of the impending downpour and the lightning that lit up the open sky.

At first, I only stopped in front of her – I was only going to pause for a few seconds – but I couldn’t contain myself. I had to pull into her driveway once more.

I pulled in, only a few feet, and got out of the car. I couldn’t contain the flow of tears that erupted from places I usually contained. I held my hands to my face and let out the kind of cry that most of us rarely allow ourselves to. I looked at her, blurry from tears. The windows had drawstring blinds, hiding her from sunlight. There were no flowers in the gardens. She was a shell – and I think she knew it too.

I saw a shadow move past the living room window, and with that, I got in my car, pulled out of the driveway, and never saw her again.

As I drove away, I remembered the harsh transition from the early years of my life there — this idyllic childhood I lived, to what it felt like for my body to age seventy years, seemingly overnight, while my family fell apart.

Killing Donald Witty

The Journal of the American Medicine Association (JAMA) published a report that people with severe stress disorders are 36% more likely to develop an autoimmune illness. Comparatively, those with PTSD are 46% more likely.

Further, another study recently came out by Martin Picard, a psychobiologist at Columbia, that says when dealing with acute or chronic stress, our mitochondria become damaged, leaks into our bloodstream, and in turn, can lead to inflammatory diseases.

Mitochondria are these little organelles within cells that are responsible for providing the energy we need to function. According to this research, when we become stressed, our mitochondria go into overdrive from our body’s fight-or-flight response. They respond by producing more energy to increase our heartbeat, expand our lungs, and tense our muscles. In doing so, they can become damaged — and eventually leak into the bloodstream. Once in the bloodstream, the immune system sees them as a foreign invader and attacks — and opens the door to inflammatory diseases (as well as psychiatric conditions and neurological disorders).

Knowing what I know now about what having a low vagal tone can cause, it makes me wonder: do other patients like me already have a low vagal tone to begin with, and then the mitochondria leaking into the bloodstream creates the perfect storm for disease? Or does the mitochondrial leak cause the vagus nerve to become less active, leading down the path of internal destruction?

One of those chicken-or-the-egg issues that I’m sure will eventually be uncovered.

What I wonder more, however, is if, for more than a third of patients, the trigger for inflammatory diseases is stress, how does that correlate with the fact that a third of patients with inflammatory diseases don’t respond to biologics, DMARDs, and other immunosuppressants. Could it be because biologics and immunosuppressants work to suppress inflammatory cytokines in the immune system, but don’t deal with the damaged circulating mitochondria? If that’s the case — does vagus nerve stimulation impact hormones and mitochondria as well as inflammatory cytokines?

Anyway, there was a lot going on in my world when I was diagnosed with Crohn’s; I say this not to place blame anywhere, as many people have severe or chronic stress in their lives. Instead, I say this because science has proven that there is a direct link between stress and disease.

When I was diagnosed with Crohn’s, my family was in the midst of turmoil. My uncle was a few years into brain cancer, and tensions in the family were high. Looking back, it almost seems like my family was bound together by ancestral trauma, going back generations.

My great-grandmother, Jesse Witty, decided that if her voice wasn’t loud enough to be heard, a glass Heinz ketchup bottle would get her point across. As a young woman and first-generation Scot, she met Donald Witty when he was making his door-to-door rounds as an insurance salesman. Her mother, a first-generation Scotch Presbyterian, immediately approved of the handsome young man for their daughter: he was a World War I veteran, aspired to be a minister, and was also Scottish to boot. Soon, they were married, and in those early years, according to my Nan, they were quite happy. Donald never had the opportunity to become a minister. He ended up owning a successful plumbing business. He would come home from work and often call Nan and her brother Ralph outside to explore the meadow nearby, holding his finger up to his lips and whispering gently, “I want to show you something, but you have to be very quiet,” leading them to a bunny’s nest, gently lifting the straw to expose the babes underneath.

And then the Great Depression hit. Nan went from being a little girl in a stable middle-class family to sharing shoes with her brother Ralph. Donald continued with the plumbing business, but when his clients were unable to pay for his services, he didn’t feel right not being there when they needed him, so he continued to answer their calls. Things went wrong, and things fell apart. As time passed, money dried up, and he joined the other out-of-work men of the era in the place where there many were: the local pub. Somewhere in-between memories of World War I, a ministry he never resided over, and the Depression’s impact on his ability to provide, he got lost.

One Sunday afternoon, Jesse, Donald, and the kids had just gotten home from church, where Donald was superintendent of the Sunday School at the time. While sitting around the table for Sunday dinner, Donald had been criticizing Ray. Ray had developed cognitive deficiencies as a result of the measles as a toddler; he was weaker and more fragile than his father hoped he’d be. Donald had begun to make a habit of letting Ray know it.

Finally, Jesse had enough. Sitting at the table, looking down at her plate, she quietly said to him, ‘that’s enough, Donald,’ but he kept going. Once again, she said, ‘I said that’s enough, Donald,’ which again, he ignored. With that, she picked up the bottle of ketchup and clocked him over the head, knocking him out cold.

Down the lane from their house, her best friend Clara lived on the corner. She picked up the phone, called down to Clara, and said, ‘Clara, you have to come over immediately, I think I’ve killed Donald!’

I have no doubt that had he actually died, those two women would have buried him in the backyard, planted a garden over him, and spent the rest of their lives living the true, adapted story of Goodbye Earl.

Lucky for Donald, he didn’t die, and he also never insulted Ray again. Soon after, they had to leave that house and moved into a house nearby without running water or plumbing. They lived simply. Donald eventually left after Jesse filed for legal separation. He didn’t come around often but did come to the house to install plumbing when he and Jesse could afford the supplies to do so. They never officially divorced, and he slowly slipped away. Ray and Ralph both left school early to work, as my great-grandmother couldn’t support four kids alone. Donald sent ten dollars a week, but that only got them so far. Ray worked at the pocketbook factory, and Ralph eventually became a groundskeeper at Picatinny Arsenal. Ray used to give Nan five dollars every time she brought home a report card where she made High Honor Roll. She graduated valedictorian in middle school and graduated seventh in her class of 210 students in high school. As a young woman from a poor family who she needed to help support, college was a luxury she was unable to pursue.

Nan didn’t see her dad from the time she was seven until she was nineteen when she and Pop were building their first house. Their friends and family came together to pitch in their trades, and Donald came and installed all the plumbing. I think some people are unable to articulate their pain when they are still living it, but through acts of kindness, they try to apologize – and he did. After, they lost track of each other again for nearly another decade until one day, she was driving through Boonton with my mom, who was a toddler, and saw him sitting on the sidewalk. She pulled over and introduced him to my mother, and he swore to never drink again — and he never did. He moved into Nan and Pop’s house soon after.

He and Jesse had a silent understanding of civility, though I’m sure they didn’t quite enjoy each other’s company. Nan said that he spent the rest of his life making up for the first part of hers: he was a doting grandfather to my mother, spent his time tending a 100-foot vegetable garden that he built in Nan and Pop’s yard, and was an avid reader and seeker. The only story he shared with Nan about his time in the first world war was his memory of the day it ended; alongside the other troops, he walked through the streets of Calais, France, as people cheered on the sides of the streets.  

Sometimes I don’t know how Nan survived the 60s and 70s. While raising her young family, she took on the responsibility of holding her own immediate family together. Her brother Ralph developed schizophrenia in his adulthood. Married and working at Picatinny Arsenal as a groundskeeper, he didn’t show up for work one day and left his wallet and personal belongings on the kitchen table. Nan and her sister, Jean, covered all of Morris County looking for him when one of them came up with the idea to check in with Greystone Psychiatric Hospital. He had checked himself in because the voices told him to kill his wife Ann. Soon after, Greystone performed a lobotomy on him. Nan said that it took away the voices, but he was very quiet and didn’t show emotion for the remainder of his life. He died of the Hong Kong Flu in 1969.

Her other brother Ray had the measles as a young child that resulted in a fever of 107 degrees, causing permanent brain damage. From what I’ve been told, Ray was able to carry on a conversation and could somewhat navigate living on his own in his adulthood — but Nan was responsible for paying his bills and making sure that there were groceries in the house. Unfortunately, in 1974, he met a drifter in town and told the man how he had inherited “beautiful things” from his family. The drifter followed him home, went into his apartment, beat him to death, and robbed him.

Soon after, her mother died.

Right around this time, Nan started experiencing inflammatory symptoms that led to a diagnosis of lupus and Sjögren’s syndrome.

In the early 90s, Pop was diagnosed with Lou Gehrig’s Disease – oddly, three of their neighbors on Kingsland Road in Boonton also developed ALS. We later found out that there was a scandal with the water company nearby, and the groundwater had been contaminated.

Pop grew up on a dairy farm in Honesdale, Pennsylvania, the son of Robbins Douglas and Mae Sodden. We still aren’t sure how old Grammie Douglas (Mae) was when she died, but she lived well into her 90s. She lied about her age because she was ashamed of how young she was when she got married — she likely wouldn’t even have a driver’s permit by today’s standards when she said I do. They had my pop, Kenneth, another son, Albert, and their daughter Elizabeth.

Pop met Nan when she was 19 and he was 27 and married that same year. Instead of buying a wedding ring, they bought a refrigerator. Nan kept him on his toes, much to the chagrin of his more traditional parents. They’d come down to Jersey for the weekend from the dairy farm and find to their utter shock and horror that their dear Kenny had to take out the garbage after a long day at work. My four-foot-eleven great-grandmother, Mae, who wasn’t allowed to wear pants for her entire life (and when her husband died, threw out all of her dresses and wore nothing but pants until the day she died), would say, No, no, I’ll do that, Kenny! to which Pop would smile and Nan would say, ‘No, he is perfectly capable of taking out the garbage himself.’

My grandparents bought the farmhouse in 1986 after Pop retired; he had spent thirty years as the supervisor of TriCounty asphalt in Rockaway and wanted to spend his retirement working a gentleman’s farm in the country. Uncle John lived there with them as he went through the police academy, and eventually, after Pop died, he and my Aunt Jenn bought the place. It was a three-bedroom, burnt auburn farmhouse built in the late 1700s with small revolutionary war era windows on the front-facing portion of the second floor of the house. The doors in the house opened and closed by old-style levers that shut in place, or black porcelain doorknobs. The ceilings were high, but the doorways were short. A big maple tree sat in the backyard and held an old wooden swing for two; there was a large, in-ground pool and pool house that sat next to a massive tennis court. Every summer, my mom would hold pool parties for all of Kristin and my friends. My dad would give hayrides, two dozen of us elementary-aged tots would wrap up in towels, still soaked from the pool, and up we’d go to the barn to pet the horses alongside my parents’ watchful eyes to make sure none of us lost a finger.

The driveway wrapped around to the old farm road, and along that, a pole barn with about four horse stalls, a workshop that always smelled like oil and wood-shavings, and a loft for hay, which was next to what we called ‘The Big White Barn’ that had multiple stalls for cows and goats, the old dairy cow section of the barn that was dark and had a back wall made completely of stone — it was missing some pieces, and the farm cat was pumping out kittens left and right. In the darkness, you’d see the outlines and eyes of a dozen or more kittens holing up in places where the stones used to be. A massive hayloft was above there as well with an unsteady floor that we were firmly told to never walk on, or we’d go right through — but we’d go to the concrete section at the opening and shoot the BB gun at the pigeons who took up residence there. Years later family friends like to joke about how Pop would hide in the Big White Barn to smoke, saying to whoever was with him ‘Don’t you tell Shirley.’ Many nights as we drove away and up the hill toward Father Livolsi’s, I’d turn around and look out the back window of the car into the dark, toward the farm, and see in the dusk an orange flicker in the distance of Pop’s cigarette.

As little girls, Nan would walk Kristin and me up along the hill headed toward the neighbor’s house and we’d pick buttercups, holding them up to our chin, deciding who liked butter and who did not. On summer evenings, we’d get out of the pool after having spent the entire day there and dodge the evening bats in the driveway as they dive-bombed us on our way across the driveway. At night, she’d tuck us into our beds in our bedroom at the farmhouse, right at the top of the stairs that shared a door to the very next room, which was Uncle John’s, and she’d go from Kristin’s bed to mine, singing Scarlett Ribbons to each of us individually, stroking our faces (or, as I called it, ‘scrubbing’ because I could never remember the word for stroking), and end it with a separate goodnight for each of us: for me, it was a quick Goodnight Little One, Sweet Dreams, Sleep Tight, I will see you in the morning.

The property on the other side of the barns was sprawling pasture, and up the hill from there, the land that my parents eventually bought from my grandparents for us to build a house on. The day after the foundation was set, my dad took me up to walk around it — it felt like a maze in a gigantic hole in the ground and I asked if it could just stay this way, and we could put a roof on it and make it our very own cave; unfortunately for my cave-dwelling plans, the modular house showed up on four oversized trucks weeks later — it was a dark, stormy day, and we sat in the yard as a crew of builders fit the pieces of our house together, and ate all the good doughnuts that mom had bought for them — leaving us the shitty jelly ones.

As the years went on, my parents turned the property into their dream house; we had multiple gardens that my mom tended to with wildflowers and swings; the two front gardens attached to the house each had stepping-stones that led to a bench — one garden was mine, the other was Kristin’s — and we had a huge wooden swing covered by an arbor and rose bushes that looked over the Appalachian Mountain range, looking right up at the pavilion on Sunrise Mountain. Walking in the front door, the house always smelled like clean linen candles my mom burned daily; a hint of burnt firewood in the living room from my dad lighting a fire in our chimney every night. To the tourists of Kymer’s Campground who returned year after year, our house was known as ‘the house with the hot pink front door.’ My room was on the northeast side of the house. We were less than two miles from the local zoo, Space Farms, owned by the same family for a century. At dawn, I used to wake up to the sound of the lions roaring — a strange and wonderful sound in rural, backcountry New Jersey. On weekends, my Uncle John and Aunt Jenn would load my cousin Zach and me up on the wagon — a long, red wagon with bench seats that could fit about 30 — and we’d ride from the farm two miles down Wantage Ave with the massive Belgian horses leading the way to give rides to the zoo-goers. It’s not until recently that I realized that this wasn’t in any way a normal childhood — and among my other adventures in the hills and valleys along the Appalachian Mountain range, it was all kinds of wonderful.

When Pop died of Lou Gehrig’s in 1993, things changed, or so I hear. I was only five. My memories of him are brief glimpses of time; I remember eating Circus Peanuts with him on the couch (that 1970s-style ugly, floral couch that everyone of that time seemed to have) in the farmhouse living room, which was always dimly lit. I remember how at the end of visits, he’d pretend to be asleep on the couch because that was the only way I’d kiss him goodbye — I’d run over and kiss the bald spot on top of his head, right in-between the patch of hair at the front of his head and the horseshoe of hair around the sides and back, and as my puckered lips quickly pecked him he’d ‘wake up’ with as much of a startle as he could fake and I’d run away laughing.

I remember the locket my mom gave me after he died — with a picture of us on the stairs of the farmhouse having a tea party — and I remember how my sister changed after he died.

It’s always been difficult for me to discuss the struggles my sister has faced with mental health. I feel guilty for so much of it, even though I know that’s not reasonable. I know she has felt that way regarding my struggle with Crohn’s disease. We’ve always been a bit of a Yin Yang: my physical health has been debilitating for me, and her mental health for her. I can’t help but feel responsible for some of her struggle: my disease always required a lot of attention.

After Pop died, Kristin spiraled into depression. Her best friend’s mother pulled my mom aside when mom went to pick Kristin up at the friend’s house one day and said that her daughter and Kristin could no longer play together because Kristin was just too sad, and it wasn’t good for Katie. Pop had only passed just weeks before, and my mom wasn’t thrilled with this woman’s lack of compassion. Therefore, she ripped into her, and asked her what kind of child she was raising that couldn’t be exposed to the variety of emotions of the human experience, and that maybe instead of not letting them play together and making Kristin suffer another loss, she should ‘talk to her god damn kid’ about the lesson to be learned here about what our friends go through in this life, and how to love them anyway.

The mother disagreed, and from then on, my mom decided to make her regret it at every encounter.

That mother was very pale and had jet black hair that my mom said she must have used shoe polish to color. The stark black hair and pale white skin comparison earned this woman a new nickname from mom: The Cow Lady. As we drove past her house on our way into town, my mom would roll down the window and moo at the top of her lungs. At softball games where they both attended because the girls were still on the same team together, my mom would spot The Cow Lady and plop her chair down right smack dab next to hers and say, “Oh HELLO. Fancy seeing you here, how have YOU been?” and proceed to talk her ear off.

Nobody was allowed to mess with Lynne and Tim Monk’s kids.

That’s not what mirrors are for.

The rule of thumb for Kristin and I was along the lines of I can mess with her, but you can’t.

I don’t often hear stories anymore about siblings today chasing each other around the house threatening to kill the other. Does that still happen? Or are today’s youth civilized? Because Kristin and I tried to murder each other on a regular basis.

Once when I was about eight, Kristin was being a shit and tormenting me somehow, so I tackled her down to the ground and while I was holding her down with my knees on her chest, I grabbed the floor-length mirror leaning up against the wall next to us, held it over her head, and told her that if she didn’t stop picking on me, I was going to smash it over her head.

In our teenage years, she was driving me somewhere, and I clearly did something to piss her off, and she whipped around the corner of Frankford Park and told me she was going to drive my side of the car into a tree if I didn’t get my shit together.

As you can imagine, I straightened up quick. (And didn’t drive with her again for about a decade.)

The last physical fight we had was when slugged me in the bicep as hard as she could with her knuckles, and it left a wicked bruise, which made her cry for days because she thought I was going to end up with another pyoderma (by then, I already had two).

Luckily, I didn’t, but we decided to retire our boxing gloves – though not quite yet step out of the ring.

The Monk Industrial Complex

While my mom’s side of the family was a boisterous, lively group, my dad’s side was tame and reserved. My immediate family didn’t quite fit in with the larger Monk Industrial Complex. My dad was one of eight kids, the third oldest, and the hell-raiser of the family. He wasn’t a stranger to dine-and-dashes as a young man with the rest of his Denville crew at Paul’s Diner on Rt 46, where they’d order as much as they could on the menu, eat everything, and slowly, one by one, walk out the door, with the last one rushing at the end and climbing on top of the roof of the car that sped down Rt 46. Nor was he an alien to spending his teenage Saturday nights lobbing golf balls into the drive-in movie theater on Rt. 46. His Irish-Catholic parents became accustomed to leaving for church on Sunday mornings and finding him passed out in his car in the driveway. On more than one occasion, he led his little brother by fourteen months down his similar highway to Hell, at one point he and the crew abandoning a young Joey after they all had just egged police cars from the woods next to the police station lot. Uncle Joey didn’t rat them out and spent three months washing police cars after school every day.

My parents met while working at a banquet hall in 1985. My dad had been married once before — he was married to a chemical engineer whose job brought them to Texas. His first wife was then offered a job in Italy, and my dad didn’t want to follow — he was ready to start a family and wasn’t interested in following his first wife around the world.

When my parents met, my mom was engaged to an Italian guy named John. John drove an El Camino and worked at the banquet hall where my mom and dad both worked. John was an asshole; it turned out that he was cheating on my mom with one of her best friends (who was also to be a bridesmaid in their wedding). My mom and dad became friends, and one night, my dad said to my mom, ‘what are you doing marrying a guy like him when you could be with me?’

Soon after, she broke it off with John.

After several months, my parents decided they wanted to live together prior to getting married. They’d both been through the wringer and didn’t want to make the same mistakes over again. Anxious and shaky, my dad had to muster the courage to talk to Poppy about living with his daughter out of wedlock. He told Pop that they had both already been married and wanted to make sure they were the right match by living together. Pop shook his hand and said don’t send her home pregnant.

Eventually, they too got engaged.

Grandma Monk wasn’t thrilled about my dad’s engagement to a Scottish Presbyterian Boonton girl and made that clear from the get-go. My mom offered to convert to Catholicism, but my dad refused, as he wasn’t a practicing Catholic, so why should she be?

(That didn’t stop Grandma from having Kristin and me secretly baptized in the Catholic church while she babysat us one day, only telling my parents more than a decade later.)

My grandpa on that side was of the family was the quieter sort; whenever he greeted any of us —his almost 20 grandchildren — he would take his right thumb and make the sign of the cross from the middle of our forehead, down to our nose, and across the tops of our eyebrows. It was so gentle and so loving, and I miss that the most about him.

Family parties were always filled with the thrills of having almost twenty first-cousins, built-in playmates and best friends who giggled through Piggly-wiggly in dark basements, tried to summon-the-dead with Ouija boards we snuck into the house, and played manhunt on summer evenings. We picked wild berries in the backyard, which Grandpa Monk happily ate.

Their house was massive: it had a large wrap-around front porch, a root cellar that we were terrified of, and a walk-up attic accessed through a small door in the upstairs bathroom. A long table spanned the long dining room off the kitchen, enough to fit two grandparents, eight adult children and their spouses, and random spots for all of us kids to squeeze into. Being the secular sect of the bunch, my mom tried to gently remind me with her elbow in my bicep to drop my fork when I thought it was time to eat, and Grandma, on the other hand, thought it was time to pray.

The extent of prayer that occurred in our house was when we were yelling for Jesus himself – like when, years later, Kristin was driving me and our cousin Hannah somewhere, who was only about six at the time – and as the traffic light out of Branchville turned green and Kristin was about to go, a car ran a red light in front of her.

“JESUS CHRIST!” Kristin yelled.

Sitting in the back, Hannah went wide-eyed and shot straight up in her seat and yelled, “WHERE?!”

Nonetheless, over the years, my mom desperately tried to please my grandmother by getting us more involved with the Catholic church. She was able to convince Kristin to stick it out through her first communion and confirmation, but I didn’t quite cross the finish line. I was about four or five the first time I was involuntarily dragged to partake in the local church’s CCD. I never knew what “CCD” stood for, but I knew I didn’t like it – it felt like someone was taking a pickaxe to my temple and telling me stories that I didn’t really like but was forced to say I understood and enjoyed, but really didn’t.

It turns out that CCD is an abbreviation for ‘Confraternity of Christian Doctrine.’ It’s basically the same thing across all Christian church sects – some call it Sunday School. Whatever you want to call it, I thought it sucked, because I went to school Monday through Friday, and anyone who was going to take away from my time gallivanting through the hills and woods of my backyard was on my shit list.

I thought I was a pretty easy kid to please – if you looked at what ‘easy’ meant from my standards. Give me woods and mud and a ball and I was a happy camper. Put me in a dress and saddle shoes (the ‘dress up’ shoes of the 80s & 90s) and tell me to smile, and I was going to hate you and curse you out in my head until the ordeal was over and I could go home and throw rocks in the creek and pick Pooh-Sticks, and drop them on one side of the bridge and then quickly scoot to the other side to lay on my tummy to see them float on by.

On my first morning of CCD, I sat down in a circle amongst my fellow inmates while two ladies both wearing high-waisted pants with tucked-in white turtlenecks, told us the difference between the words “obey” and “disobey.”

I didn’t get it. I wasn’t paying attention. I was looking out the window at the big puffy white clouds passing against a perfect backdrop of robin’s egg blue and dreamed of the things I’d rather be doing.

As you can imagine, I was the perfect example of this lesson.

I came out of my daydream to the sound of my name – it came from a voice that was slightly aggravated but also belittling in that polite but condescending kind of way – I looked up at her and let her know she temporarily had my attention.

“Class, we’re going to go around the room and with our newfound knowledge of the difference between ‘obey’ and ‘disobey,’ you can each tell us which word you’ll put into use when told to do something by your parents, teachers, and all of us here at the church. Kelly, what will you do when the church or your parents tell you to do something: will you obey, or will you disobey?”

That was too much talking, and she lost me long before she got to the question, and I hadn’t been paying attention to any of the rest of the lesson, but I figured the second word was longer and bigger sounding words had to be the better answer because they were harder to spell so that must be what she was looking for.

With enormous brown eyes looking up at her face, I took a moment and a deep breath, and said somewhat hesitantly:

“Disobey…??”

“No Kelly. No. That’s not the correct answer. Derek, can you help Kelly out? What will you do when the church or your parents tell you to do something, will you obey, or disobey?”

With that, the indoctrinators went around the room to each of the inmates, and each responded with “obey” because they knew better than to give the answer that the heathen who was called on first gave.

It was decided early on that I wouldn’t be continuing in the path of faith, and though grandma wasn’t happy about it, I’m sure it saved some level of humiliation at having to explain that the heathen in the third pew with her feet up on the bible shelves was her flesh and blood. Ironically, as I grew up, my aunts and uncles would comment on how I had become the favorite of my grandma’s almost 20 grandchildren — ‘her sunshine’— and though we differed on so many things, I think she appreciated that I questioned everything because it allowed us to have meaningful conversations. As the matriarch of the Monk family — nearly three dozen humans between her children, their spouses, and grandchildren — everyone ‘yes’d’ her so much... and I, lovingly, ‘Why’d’ her. We had a funny relationship as I got older; after going out to lunch one day, I dropped her back off at her apartment. She looked at her watch, sighed in relief, and said, "Oh good. I made it back in time for Frank's memorial service. These old farts seem to be dropping like flies around here, it’s like the waiting room for God."

Having grown up under my grandma’s roof, my dad largely rejected both Catholicism and all organized religion. He never believed in finding God in man-made structures, but I know he has always felt closest to whatever the hereafter could be while in nature – when he could strip away the extra and the excess – the wind in his face on motorcycle rides up the winding mountain road to the Hawk’s Nest, or with his fishing pole in hand along the shore or a nearby pond, or in the woods.

My father’s only religious education for me consisted of one line, and one line only, that he repeated often throughout my childhood whenever he thought I might need to hear it:

“An idle mind is the Devil’s workshop.”

Meanwhile, if I ever told my mom I was bored, she told me that if I had time to be bored, I had time to vacuum.

These crucial directives kind of feel like the exact same lesson.

American Celt

Throughout my childhood, our Scots-Irish heritage played a pretty massive role in how we identified ourselves in the world. My parents took us to Irish Weekend every September in North Wildwood, where we’d sing songs as Blackthorne played about our hard-earned freedom from the English and our brothers and sisters still fighting the battle in Northern Ireland. The IRA supporters passed out stickers and pins for the freedom of political prisoners. I was signed up for Irish step dancing lessons when I was five, and much like my mom’s efforts in ballet, as a tomboy, this didn’t stick.

In our study at home, my dad had a framed paper stamped in old-style letters that said, ‘No Irish Need Apply,’ and until I was about eleven, I thought that meant our ancestors didn’t need to apply because they were so great that they just went in and got the job. When my dad heard that was what I thought, he quickly corrected my version of history.

Regarding the Scottish side, it was more about learning our ancestry and honoring the descendants we came from through the family bible, century-old pictures of them, and being proud of their grit and the backbreaking work our people did to give us the privileges we have today. Even now, when I drive through Boonton and Montville and see the stone walls everywhere that my second great grandfather, Big Bad Jack Taylor, built with his signature pointed stones lining the tops, I think of him and the people I come from and am transported to their time in space.

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Listen to the vibe:

Tell your friends:

Chapter two coming your way next Sunday morning at 7 am!