Oh, a trouble’s a ton or a trouble’s an ounce or a trouble is what you make it.
The Vagus Nerve: The 10th cranial nerve, its name is derived from the Latin word for 'wandering' because it wanders from the brain stem down to all of the body's organs.
The Inflammatory Reflex: A neural mechanism that modulates communication between the brain and the immune system, with afferent fibers of the vagus nerve communicating from the immune system to the brain, and the efferent fibers of the vagus nerve reflexively regulating the production of inflammation from the brain to the immune system in response.
Research continued with uncovering the anti-inflammatory effects of CNI-1493. Because of his work with TNF, Dr. Tracey knew that inflammation was at the heart of disease, so they used CNI-1493 for experiments on stroke, sepsis, arthritis, infection, and inflammatory bowel disease.
As expected, the CNI-1493 greatly improved all of the above.
And then an accident happened in the lab.
Dr. Tracey and the team were experimenting with the molecule on rats with a stroke. Strokes occur due to a series of events that cause the brain to go haywire. This causes TNF to be released by the cells affected, which can result in more brain damage.
They decided to inject CNI-1493 directly into the brain of the rats to see if it was more effective than when injected into the bloodstream intravenously, where it has to cross the blood-brain barrier.
It did, indeed, turn out to be more effective, which they expected – but what they didn’t expect was that TNF was diminished in the body as well.
Dr. Tracey was astonished. Where was the connection between the brain and the body that allowed the brain to effectively shut down cytokine production everywhere? How was it passing the blood-brain barrier? He knew that there must be a mechanism allowing the brain to communicate with the immune system.
His search landed on the vagus nerve, also known as the ‘wandering nerve’ because it is connected to all of the immune system’s organs. He theorized that if the vagus nerve was electrically stimulated, it would communicate using neural pathways to shut off cytokine production between the brain and the immune system.
Using an off-the-shelf vagus nerve stimulator, he tested his theory by electrically stimulating the vagus nerve in rats and watched as TNF production fell in the body: thus, his discovery that the vagus nerve acts as a reflex of inflammation. He coined the term ‘The Inflammatory Reflex,’ as his discovery proved that the vagus nerve is a communication highway that regulates the production of inflammation in the body in real-time.
Dr. Tracey published his findings in ‘Nature’, titled “The Inflammatory Reflex” in December 2002.
From atop our hill on Kymer Road, looking down into the valley and up into the mountains, I’d sit on the floor and look out our big window on the far end of the kitchen when a summer storm was rolling in. The blue skies faded to shades of gray, and black clouds bellowed in, and right before the rain and thunder came, the wind picked up and blew from below the trees, turning the leaves upward.
Storm’s coming, I’d say matter-of-factly to whoever was nearby.
In the early fall of 2002, we were at one of the Monk-family parties and I was practicing my tap-dance routine for the play I was in, The Music Man. I wanted my cousins to see my new tap moves and what better place to tap dance than a front lawn? Somehow, to my shock and dismay, the grass isn’t great for such performances, and I managed to twist my ankle. It swelled up immediately. Within days, I was at the orthopedist, where I had to be held down on a table as they stuck a needle in my ankle to pull out 10 cc’s of fluid. Hours later, it filled back up. Within days after that, I began to experience gastrointestinal symptoms like abdominal pain, nausea, and diarrhea up to a dozen times a day. My orthopedist began to realize that there was more going on here and sent me to Goryeb Children’s Hospital at Morristown Memorial.
Looking back now as an autodidactic student of science, I think what happened is that I already had damaged mitochondria circulating throughout my system at the time that I twisted my ankle. I think that my fight-or-flight response had been constant for too many years, which triggered my adrenal glands to then damage the mitochondria in my cells, releasing them into my bloodstream. When I twisted my ankle, I think that it released HMGB-1 from the cells at the site of the injury — and when HMGB-1 is released from cells, it acts as an inflammatory cytokine, and it strengthens other inflammatory cytokines by binding itself to them. I think that the HMGB-1 combined with the circulating mitochondria created the perfect storm for my Crohn’s disease.
For the first time in my life, my body felt separate from me. I didn’t understand what was happening to me. After a visit to Goryeb Children’s Hospital, Dr. Rosh called my parents to go over the blood work and other labs. My mom came into the study at our house, where I sat at the desk chatting with someone on ICQ and AOL while playing Solitaire, and she said we needed to talk. She explained to me what Dr. Rosh had told her and that I would need to get a colonoscopy and endoscopy to determine if I had something called ‘Crohn’s disease.’ With my voice wavering, I looked at her and asked, “Am I going to die?”
She quickly comforted me and told me that I was going to be okay, but that if I do have this, that we had to get it under control, and that life would be different, but that I’d be okay. This became a recurring conversation between my mom and me in the fifteen years that followed; in my darkest moments when I thought I might be at the end, without saying a word to her, she saw the look in my eyes and would look at me and say, “Not today, Kel.”
My colonoscopy and endoscopy were scheduled on the same day that my uncle would need another brain surgery to remove another tumor. It had been over three years since his diagnosis, and it seemed that we’d no sooner see a tumor removed when another would pop up.
To make things easier for our family, my doctor performed my procedures at the same hospital where my uncle’s surgery was taking place. He was three floors up from me having brain surgery during my endoscopy/colonoscopy.
The night before his surgery and my procedures, my parents invited everyone from the valley up to the house for dinner, (which I somewhat resented at the time, as I had to drink the colonoscopy prep in front of all our family and neighbors — which my grandmother mixed with Ginger Ale [I don’t recommend this concoction]). With my childhood crush and neighbor Will looking on, I drank a gallon of colon prep, was in and out of the bathroom, and toward the end, threw up pretty close to where he was sitting.
The next morning, we were up bright and early to make our way to the hospital, and I blacked out in the shower from being dehydrated and learned lesson #1 of living with Crohn’s disease: no hot showers after colonoscopy prep.
The weakness I felt that morning was all-encompassing — physically and emotionally. Passing out in the shower made me feel vulnerable in a way that I never had before.
As my pediatric gastroenterologist Dr. Rosh wheeled me into the room and the anesthesiologist prepared to put me under, Dr. Rosh rubbed my forehead with his thumb and said, “Ok Kelly, it’s almost time. I want you to pick your favorite place to go to.” My mom held my hand before leaving, and as the anesthesiologist pushed the medication into the IV, I said, “I’d like to go to Cayman.” For years, my parents used to take us there for two weeks every year, and it was the happiest my core family ever was — the nights on Seven Mile Beach at the old Holiday Inn where Henry or the Barefoot Man would play and I’d see my parents zip around the dance floor, and then slow dance to Wonderful Tonight, and even at three-years-old, I’d sit along the side of the dance floor and look up at them and think how lucky I was that those dancers were my parents. I was scared going into that procedure — the first medical procedure that would change the course of my existence — and for those moments right before the anesthesia took over, I wanted to be back there, under the twinkle lights, listening to the steel drums, lost in the midst of the Caribbean.
Dr. Rosh said, “Ohhh that sounds great, I’d like to go too!” As I drifted away, I mumbled, “You have to stay here and fix me.”
That day I was diagnosed with Crohn’s disease with extra-intestinal manifestations of inflammatory arthritis, and we learned that my uncle’s tumors had grown “fingers” and were far-reaching into areas that were inoperable.
On that day I received my diagnosis in September of 2002, Dr. Kevin Tracey was sixty miles away putting his final touch on the paper that would someday change everything. The Inflammatory Reflex was published only a few months later, in December of 2002, in Nature. Dr. Tracey has since proved and elucidated this discovery by demonstrating that by electrically stimulating the vagus nerve, the overproduction of inflammation can be effectively turned off in the immune system — without side effects.
This, thankfully, is what happened to me.
But not yet.
Nuclear Power Plant
Over the fifteen years that followed, I tried everything under the sun to try to combat Crohn’s disease and inflammatory arthritis. I’ve been on every biologic, DMARD, immunosuppressant, and (colon safe) anti-inflammatory available, including:
Prednisone, Remicade, Humira, Cimzia, Entyvio, Enbrel, Methotrexate, Stelara, Simponi, Imuran, 6mp, Flaygyle, Pentasa, Entocort, Uceris, Sulfasalazine, Asacol, Plaquenil, Celebrex, and Lialda.
None of them worked for too long, if at all, and doctors often circled back to previously failed drugs just to give them another whirl because we kept running out of options, waiting for new biologics to get approved for new indications.
My body always built up antibodies against everything. On top of those drugs never working (or not working for long), it all made my body physically feel like a nuclear power plant. For days after infusions, I felt foggy and exhausted and hardly able to keep my eyes open. Biologics, DMARDs, and other immunosuppressants all did the same thing to me — they all made me feel radioactive. It all made my body feel heavy and sludgy. My mind felt unclear and hazy, and I had to work that much harder to focus and learn. I already felt terrible from my disease, and now, the toxicity of these drugs made it all that much worse. Not to mention that the world’s worst balancing act is deciding what’s worse: the disease symptoms or the possible long-term side effects, like lymphoma, rare cancers, osteoporosis, and more? As a kid, my parents’ conversation about medication always went like this: “We just have to buy her time until a better option comes along.”
As a kid, I got my Remicade infusions at Goryeb’s Children’s Hospital, where they would infuse the Remicade over about four or five hours. The pediatric infusion center had private rooms with beds so the kids could be comfortable, and the families had some privacy. It was always dark and cozy in those rooms, and when I became an adult and spent those infusions in a metal chair, I missed the comforts of being a ped. They pre-medicate most biologic infusions with Benadryl to reduce the likelihood of an allergic reaction, and the IV Benadryl is magically relaxing. Like the weight of the world lifting off your shoulders; delightful tranquility, sans narcotics.
That weight returned once when I woke up during one of the infusions to find my dad with his head in his hands next to my bed, crying. I watched his shoulders bob as he silently sobbed. His office was about twenty minutes away from Morristown; every time I had an infusion, he came to have lunch with me and visit. As soon as he got there, my mom would leave to go pick up Friendly’s takeout for all of us. It was our Remicade Tradition. This time, while he thought I was sleeping, I laid there quietly and watched him sob into his hands. My heart ached. I knew that my disease affected my parents as much, if not more, as it did me.
Disease is a full-time job for a patient or caregiver. The paperwork never ends, nor does the battle with insurance companies. My dad worked for a great company and had excellent benefits, but every month, it was a battle to get them to cover my medications. We got flooded with calls from the insurance agents, and sometimes even nursing staff that worked for the insurance company, trying to find holes where they could deny coverage. They’d argue with my doctor about trying a cheaper drug (all of which I either had or eventually did end up taking). Even as a teenager, I thought about how if this is so hard for us — for a middle-class family with good benefits — what was it like for other kids that were sick and didn’t have a dad with a good job like mine?
On top of that, those drugs were meant to address the disease and the malfunctioning immune system. We haven’t yet counted the drugs that I was put on for pain management. When your body is constantly trying to kill you, it turns out, that is a rather painful experience most of the time.
My appearance changed often as a result of medications or flares; my weight fluctuated, sometimes I had awful acne from high doses of prednisone, which also made me gain a third of my body weight in a matter of months, and the disease made my bones feel old – I didn’t feel like the other kids I was at school with. My dreams of a field hockey scholarship came to a screeching halt. I traded in my shin guards, my field hockey stick, my basketball, and my aluminum softball bat for a prescription for sixty milligrams of prednisone. Prednisone side effects: acne, mood swings, and worst of all, weight gain that was completely unavoidable. In the midst of these changes, I dodged being in family pictures, and my teammates slowly disappeared.
Prednisone followed me throughout high school. My weight fluctuated, and I soon realized that if I starved myself, I could get down to almost what I was pre-diagnosis. The fluctuations happened regularly between my weight of 130 to 150 pounds, as I'd go through periods of starvation and deprivation, and then the exhaustion from lack of nutrients led me to be forced to eat again, and I'd balloon back up.
Back then, while I dealt with my colitis, my arthritis was contained to my left ankle, so I was still able to ride my Kodiak 4x4. After school and on weekends, I’d tear out of the yard, down the hill, and up through the meadow. I’d drop the clutch down into fourth and fly at 45 MPH through the fields. It was some kind of a mix of the need for speed, the release of rage, and the desire for control over something that led me recklessly through the high brush, until one day, I heard a high-pitched squeak at the top of the hayfield, next to the highest tree stand. I stopped the quad, turned off the engine, and walked around, terrified that I had run something over, though I didn’t feel a bump.
Burrowed in the grass, a fawn no older than a few days old lie there blinking preciously at me. I sat down next to him, petting him from between his eyes to the tip of his nose, and checked his legs and body to see that he was in full physical health. When I got up to walk around to try to find his mother, he continued to lay there looking at me. I didn’t see her, and I worried that he’d been abandoned — not knowing that mothers leave their babies hidden and return later.
I knew the sound of the quad would startle him. My swollen ankle was braced, but I couldn’t do much more than limp on it and it was a good 20-minute limp home. I took the keys out of my quad and left it in the field, took off my sweatshirt and wrapped him in it, and carried him home.
My parents weren’t strangers to my bringing home of creatures I found in the woods – I found a cat in the woods who I also brought home and decided was my own. His name was Kitty Cat, and he became an indoor/outdoor cat for the next decade of my life... so if he actually belonged to someone else, he could have left – but he came back every day, so...
Anyway, a deer was a surprise – I believe my dad’s exact words were Jesus H Christ, Punk, but he smiled, petting the deer in my arms. We brought him into the house, and our dog Mookie decided to be his best friend. The deer licked Mook’s face as he laid on the floor next to him. We called down to the Spaces at the zoo to see what to do with him, and Parker instructed us to put him back — his mother would be back for him, and so, we did, but that didn’t stop me from looking for him every day — at a much slower speed.
As the year progressed, I isolated myself more and more at school. Every social interaction began to have so many underlying factors; I observed body language and tones of voice in a new way, and my mind questioned every conversation. It became nearly impossible for me to identify with my same-aged peers, and I felt more comfortable with the older people in my life. My teachers, doctors, and nurses became much more interesting; they knew what I was going through, and I could relate to them. Their arthritic aches were mine too. The loss of identity they experienced as their body aged was familiar to mine. I began to feel safer at the hospital than I did at school. The pediatric infusion unit of Goryeb’s Children’s Hospital was one of the happiest places I remember being during that time: the nurses met us with hugs and cheers, and we celebrated tiny victories. I would lay in bed for the six-hour infusion, sleeping most of the time, and waking around lunchtime to find that my mom had continued our monthly-infusion tradition of Friendly’s takeout: we’d each get a Fribble, I’d get the chicken parm melt, and we’d giggle with the infusion nurse. They took my mind off being where I was.
As my eighth-grade graduation neared, I found myself sitting on the deck one night at 2 am, wrapped in blankets, looking out into a meteor shower I stayed awake to watch and realized that this would be the only graduation that my uncle would live to see.
During my freshman year of high school, I often skipped lunch. I would either go to the library or just go sit in the clean bathroom over by the Roadkill Café, a small corner of the school where the special education students learned culinary and life skills and sold baked goods. It was usually quiet on that end of the school, and I knew I wouldn’t be bothered. On the rough days, I’d go into the bathroom, call my mom from one of the stalls, and cry. She stayed on the phone with me for as long as I needed – I would tell her why I was hiding in the bathroom and she would listen, and then she would talk to me about anything she could come up with to calm my nerves – everything from what we would do this weekend to where we could go on vacation next, and how great life was going to be on the other side of this. She got me on track right in time for the next period.
On the really bad days, though, when I couldn’t shake it off, she came to pick me up. I’d meet her in the front office, and I spent the day going with her to house showings or running errands, or I would go have lunch with Nan.
My Nan knew what it was like to be a kid going through the things that I was going through – because she was a kid who went through things that kids shouldn’t go through. During our lunch visits together, sometimes we talked about things that I had going on, but more often than not, we talked about our family’s history – which I loved. We spent hours going through pictures of our ancestors and she would teach me the who’s who of the family tree and show me the gems that have been passed down through our family, brought over on the boat from Scotland.
In our afternoons of old pictures and family artifacts, my Nan was equipping me with not only the history of our family that will eventually lead me to become the next historian for future descendants, but she was also teaching me about the grit and perseverance of the people who we come from to help me develop the character I needed to help me navigate my own rough seas.
During many of our lunchtime visits, Nan went through her books with me – almost always poetry. As a teenager in the 1940s, Nan wrote and read poetry as often as I did – finding her voice in her pen and seeking solace and peace in the wisdom of the greats who left their poetry behind as a road map for the rest of us. She shared with me John Keat’s verse from Endymion, “a thing of beauty is a joy for ever: its loveliness increases, it shall never pass into nothingness” and Edmund Vance Cooke’s How Did You Die? –“Did you tackle that trouble that came your way with a resolute heart and cheerful? Or hide your face from the light of day with a craven soul and fearful? Oh, a trouble’s a ton or a trouble’s an ounce or a trouble is what you make it. It isn’t the fact that you’re hurt that counts but only how did you take it?”
I can still recite that one from memory.
She gave me her copies of Jonathan Livingston Seagull and Illusions by Richard Bach to grapple with stories of characters who don’t quite fit into the world as it stands, and how perhaps that’s not such a bad thing – and how they never accepted the limitations that others imposed on them – and that those projections from others are generally a reflection of their inability to see beyond their own limitations.
These were the lessons I needed – this was my school. When I was at school, we weren’t talking about any of this. None of what I learned at school was relevant to my existence, and I was surrounded by people who didn’t seem interested in learning how to navigate living. From my diagnosis through the end of high school, I thought I was stupid because I couldn’t grapple with the content. Because of my absences, there were a lot of low expectations of me, so I met the occasion and I struggled. It’s only all these years later that I now know that for kids like me, it isn’t a matter of changing the rigor – it’s about making it relevant and useful, exposing kids like me to content that makes us feel alive and helps us meet our adversity. My weekly visits with Nan had all of that for me – and so much more.
Having to sit through school was agonizing because I felt so far behind where everyone else was academically, and on top of it, I didn’t know how to relate to my peers. The weight of my existence among them was sometimes too much to bear. As my legs buckled with inflammation, I limped by them in the halls. I refused to bring my cane to school — I wasn’t about to add that to the long list of teenage offenses.
While I saw my classmates crying over first loves, I was on the verge of tears because another family member I loved died, my mom was falling apart one vodka cranberry at a time, my sister was on a tear between rage and mania, the dad I knew continued to withdraw into silence, or because I was physically in so much pain from Crohn’s and arthritis that I could barely function. As the years went on, even into my twenties, I struggled with social anxiety when alongside my same-aged peers. I didn’t know what it was like to be their age. My youth was different: I’ve stood at hospital windows peering down at parking lots from a walker. I decided that my body betrayed me, and I was a weak link in evolution. IVs dripped in my veins with toxic medications that promised one symptom relieved, but one symptom revealed. I wondered — is it better that I try to see if this relieves any symptoms while it could potentially give me cancer? Or should I just stop the meds, become bedridden, and hook myself up to a TPN for nutrition and accept that this was the hand I was dealt? Those were at my darkest moments. Those are moments that young people — better, no people — should experience.
With a diagnosis of Crohn’s and arthritis, suddenly, I wasn’t just an outcast of my former group — but an outcast of my entire generation. On top of that, things were spiraling out of control at home: my mom’s alcoholism was in full swing, my dad continued his inward retreat, and Kristin began self-harming.
I withdrew into myself more and more. I didn’t know what to do with the other kids, and the other kids didn’t really know what to do with me.
In social situations, I felt like my Crohn’s was on the outside of my body for the world to see. I’d feel my skin crawl, my nerves tingle, and my mind race, all the while noticing the eye movements, facial expressions, and energy fields of the people around me. If I was in a crowded place, I’d stumble over my words as I’d also hear the surrounding conversations, confusing me even more. And then I’d leave those situations feeling drained and overstimulated. They say that the teenager’s prayer is: Dear God, please don’t let me embarrass myself today – just like every teenager, I wanted to just blend in, and even if it wasn’t visibly apparent, I knew that my body felt different than 98% of the kids around me – combined with high doses of prednisone, I couldn’t stand to be in my skin, and felt utterly alone.
My dad drove me to school every morning, and I cherished that time in the car with my dad. Every day he played Chattahoochee by Alan Jackson, and we sang it word-for-word, smiling ear-to-ear. As he pulled up to the school, I dreaded having to get out of the car.
I missed months of school during ninth grade — a formative time for building friendships. Crohn’s symptoms made it impossible to endure a school day. My absences marked me as "the sick girl," and I remember being asked if I had cancer or if I would die — because to other teenagers, that was the only possible reason for chronic absenteeism.
From diagnosis onward, I was often the recipient of Home Instruction due to not being well enough to partake in a normal school day. Several days per week, a teacher or tutor would come to our house in the afternoon to go over the work I was missing in class. Most teachers were pretty good about sending work home; they knew my absence was reasonable and necessary, although I had one teacher who refused to send work home.
During 9th grade, I was receiving Home Instruction more than I was in school due to the circumstances. At one point, I was out for nearly a month straight. I’d wake up in the morning and before starting my schoolwork, I’d watch The Today Show, specifically for Willard Scott’s daily ‘Smucker’s Jar’ report, where he’d honor the centenarians, sharing their picture on the Smucker Jar along with their name, age, and words of wisdom to live a good, long life. I grasped at straws for wisdom from the elderly who I identified with more than my same-aged peers. I wanted to know how they managed to live so long when in my short life, living was so hard. My favorites were the sassy ones who said really contrarian things, like drink whiskey every day, eat cake, and don’t get married! I loved that they had reached the age where they could say whatever they wanted. And I burst over the anniversaries of couples celebrating 75+ years. I wondered if I would find that kind of love.
I was also a regular reader of the obituaries in the local newspaper. I wanted to know how the dead filled up the time they had when they were here.
During that particular month of home instruction, my science teacher hadn’t sent any work for me. I knew he was an asshole to begin with, but I thought he’d at least understand an illness beyond my control.
When my body calmed down somewhat, I wanted to go back to school — I wanted normalcy. The night before my first day back, I hardly slept from anticipation. I had the normal nerves of returning to routine after being out for so long, but it didn’t compare to the excitement of being able to feel like I was part of something normal. I had science during the first period of the day. I walked into class smiling and met my science teacher’s disapproving glare. He walked over and said, “So, you’re far behind.”
“Yes, I know. I’m sorry. I was wondering why my home tutor didn’t bring any work from your class though,” I responded, wanting to melt into the floor.
“No, I didn’t send any work home. Science is something you do, and you’re never here. Sorry, but I don’t know how you’re going to catch up not only this semester but next as well. You’re toast.”
Immediately, like a switch turned off, I realized that I wasn’t good enough for science; not healthy enough to do; not intelligent enough to catch up.
As I’ve gotten older, I now know this teacher was just an asshole. Now, Sean laughs when we talk about this teacher and says, “If only you could time travel to that moment and look him in the eyes and say, ‘I AM science, you mother-f*er.’”
I repeated freshman science the following year and was thrilled to not be referred to as burnt carbohydrates for the entirety of my sophomore year.
The teachers that came into my home during that time were so much more than human; I wanted to become a teacher because of the teachers they were, as well as because of the teacher he wasn’t.
In January of 2004, my cousin Robbie committed suicide. He was eight years older than me and emulated kindness and gentleness. He also struggled significantly with lifelong chronic pain due to his own autoimmune conditions. When he committed suicide during my freshman year of high school because the constant physical pain and the depression of the limitations that came with that was too much for him to bear, I was devastated.
In April of 2004, the phone rang sometime around 2 AM; good news never makes its way to someone in the middle of the night. Back in those days, a household could connect to the Internet or have access to the landline, but not at the same time. Our Internet setup was such that if an incoming call was coming through, a pop-up box would appear on the screen to notify us.
I came out of a half-dozing state to the computer screen in my room lighting up. It had awoken because of the incoming call pop-up box; apparently, I had forgotten to disconnect the Internet before I went to bed.
I knew it had to be for my uncle. By this point, he and Aunt Jenn sold the farm and moved to North Carolina. Aunt Jenn’s parents were moving down that way to retire, and my uncle wanted to make sure that she was set up with a new life before he left this one, and so that they could enjoy the time they had left together. They bought a log cabin on several acres, a few miles outside of the town of Mayberry and he spent the last several months of his life as a southern cowboy.
My aunt and uncle were the epitome of soulmates; she came into our lives when I was four and I was attached to her hip immediately. It seems somewhat divine to me that my uncle found a soulmate to adventure through both life’s joys and terrors with, and years later, I did too. As I’ve gotten older, I’ve learned that soulmates aren’t quite so easy to come by, and I'm so glad my uncle found his.
When I woke up to find the pop-up box on the computer screen, I jumped out of bed and disconnected the Internet, and waited for the phone to ring again. As soon as it did, I went into my parents' room to find my mom on the phone with my aunt. I remember standing there, seeing my reflection in the mirror from across the room, arms crossed, with this look of both terror and anger on my face. I remember thinking how my expression startled me.
When she ended that phone call, she shared that my uncle had a seizure in the shower that night and that he and my aunt were at the hospital in Winston-Salem. We would pack our bags and drive down that morning. After the seizure, he was put in the hospital where they found another tumor that was too big to remove.
That week was a blur. That morning, we packed our bags, loaded up the car, and along with Nan, the five of us made our way from New Jersey to North Carolina, stopping almost every hour at a hole-in-the-wall gas station because of my colitis. We’d then load back up in the car, and I passed the time in the backseat, taking note of how the gas prices lowered every 50 miles further south we went, and counting the random trios of crosses that stood twenty feet high along the highway as if to remind everyone of their need to continue fearing God every couple miles before they leaped headfirst into a life of sin.
Finding a bathroom every hour got harder the deeper south we went; half of our time on the road seemed to be spent with me sweating in the backseat while my dad frantically tried to find a gas station for me to use the ladies’ room at.
As my dad switched the radio station every once in a while, the further we drove south, my mom was astonished and angered to find that no matter how far we went, we couldn’t get away from Delilah – it was on that drive that we realized Delilah was nationally syndicated, following us everywhere, using her soft, familiar, are ya sad? voice in every last-ditch effort to yank at the nation’s heartstrings and demand that everyone join therapy-by-radio with all the other sad souls hoping to find just the right song to cry along to.
We spent the week in Aunt Jenn and Uncle John’s cabin deep in the woods of North Carolina. I slept on the couch in the living room. Every night while the rest of the house tried to but also couldn’t sleep, I laid there watching CMT music videos – Josh Turner’s Long Black Train seemed to come on every three videos like clockwork, and my mind went down the rabbit hole to the sound of his deep baritone voice. Every few minutes, I was up to go to the bathroom. I knew no one else was sleeping in their respective rooms; how could any of us. But the quietude was haunting.
My Uncle John was mostly incoherent for that entire week. He was on morphine and other drugs to lessen the pain of his swelling brain. The surgeons found several tumors – too many to operate on.
On April 10th, my uncle’s son Zachary, five years my junior, and I were called into the hallway where my mom, Zach’s mother (my uncle’s ex), and my sister were sitting. They told us that Uncle John had a pulmonary embolism. From laying down in the hospital bed, he developed a blood clot that hit his lungs. They couldn’t put him on blood thinners because he had just had major surgery, and he would bleed to death. In the next 24 hours, my uncle’s lungs would fill up with fluid and he would essentially drown from the inside out. I don’t remember which one broke the news to us, but I remember the look on Zachary’s face as he looked at me with his little eyebrows raised and this look of bewilderment on his face, trying to figure out exactly how he should react to this, and wanting me to guide him in what that reaction should look like.
That night was the most coherent he had been all week. We each took turns going into the room to say what we needed to. I went in and sat down next to him on his bed, and I told him that I felt like I never truly told him how much I loved him; he looked up at me and said, “Kellogg’s, I think you just did.” I laid my head on his chest and told him how much he meant to me, and what I had learned from him, and thanked him for being my Gock. He told me he’d always be with me and that anytime I needed him I wouldn’t have to look very far. He told me to follow his light, and that I’d always find my way.
I didn’t want to leave him alone at the hospital that night, but we all had to go back to the hotel and sleep for a little while. We went back early the next morning. A John Wayne marathon was playing on TV that day — his personal hero. A week later, at his funeral, I read a tribute to my uncle, and included a quote by John Wayne that I felt my uncle lived by every day: “Courage is being scared to death but saddling up anyway.”
In the hours leading up to his death, the fluid that filled up his lungs was coming out of his mouth and nose; we gently wiped it away all day. He was on oxygen. His eyes would open and close. He spoke to his dad, my Poppy, who had been dead for eleven years at that point.
My mom knew that he was going to hang onto life as long as Zach was in the room. At approximately 6:05 PM, my mom leaned into my uncle’s ear and said “I’m taking Zach down to the cafeteria, it’s ok for you to go Johnny. I love you.” She walked out of the room, with Zach, Kristin, and Zach’s mother, leaving me, my dad, Nan, Aunt Jenn, and her mother alongside him.
His breathing became even more labored than it was, his breath fewer and farther between. Aunt Jenn sat quietly by his side. At fourteen, I decided that I didn’t want to believe in a God that splintered soulmates this way; it all felt so grossly unfair and unforgivable.
His last breath was a heavy gasp, and that was it. At 6:15 PM on April 11th, 2004, with True Grit on in the background, John Kenneth Douglas took his last breath. I had been holding his hand all day, and at that moment, felt his grip slip away from me.
Pushing up daisies
After he passed, I saw him everywhere.
In the daisies that randomly enveloped the entire grassy area next to the farm road that had never done so before.
I saw memories of him driving the big John Deere tractor along the tree line, like he did when he went looking for me after I ran away from home — and he knew right where I’d be. I watched, hidden in the woods, as he drove the entire length of the perimeter of the woods, looking in, calling for me. After he died, I hated myself for not letting him find me that day.
I saw him on the stool next to my vanity, the way he sat there one night after he teased me just a little too much at dinner and I got so mad at him that I stormed up to my room. He came up and sat down on my green cushioned vanity stool and with tears in his eyes, held my hands and said, “Kellogg’s, you don’t know yet how special you are, and how much more you are than what you see in the mirror, and someday, you’re going to marry a man that is going to love you for everything wonderful that I see in you every day.”
I missed his painful ‘twaks’ — he’d hold his middle finger down with his thumb and then release it hard on an unsuspecting subject’s bicep, or the back of their head. It was his very particular way of being affectionate, and he always seemed bewildered that sometimes, it really hurt, because he was a giant. I always tried really hard to twak him back just as hard, and he’d just laugh.
Uncle John was the law of the family: he was the prosecutor, the judge, and the jury. When Kristin and I would get into our knock-down-drag-out fights, he’d threaten to bring home the ‘lie detector test’ from the police station to get to the bottom of who started it, and we’d calm down real quick. He never did, but the threat was enough to petrify us into getting our shit together.
I remembered how good it felt to make him laugh – he didn’t have an uproarious kind of laugh; it was more of this heavy breath that came out of his nose with a slight smirk as his eyes widened – and that was such an achievement to make him do that. When I was ten, I told him a joke that I had no idea the real meaning of but making him laugh was worth it – so I rolled the dice. I had watched Notting Hill with Kristin, and in that movie, there’s a scene where Julia Roberts tells Hugh Grant how big his feet are. I knew my uncle hadn’t seen that movie, and so, I wanted to make him laugh using that joke because my uncle was a giant and had massive feet with toes as long as my fingers were. I had no idea that the joke in the movie was sexual in nature, so I told it. As he sat on the chair one evening – his chair – and I sat on the couch, he took off his socks, and we watched whatever show was on TV. I looked at his feet, and up at him, and I said, “Gockey, you have big feet.” And he said, “Yes, Kellogg’s, I do.” And I said, “Gock, you know what they say about men with big feet?” and at that moment, his eyes widened, and he tilted his head slightly to the side, curious and terrified to see where I was going with this. Hesitantly, he said, “What, Kellogg’s?” and I said, “Big feet... large shoes.”
He broke into a half-smile, realizing that I had no idea what I was saying, and we carried on watching Cops or whatever else was on that afternoon.
After he was gone, those random snapshots of our time together would knock me on my ass and send me into tears – everything reminded me of him. I saw shadows of where he once was everywhere.
I think my mom did too because she took on more hours at Cafe Navona, the restaurant she’d worked at for most of my childhood. It was (and still is) owned by my Aunt Mary Jean’s cousins. They first opened a restaurant called the Harlequin in Wharton right before I was born — my parents both worked like crazy in those days, my dad selling insurance and bartending, and my mom waitressing. When I was born, she’d bring me and the pack-n-play to the Harlequin and set me up in the little alcove off the kitchen, and she’d waitress and the dishwasher, prep cooks, and chef would take turns checking on me. As I got older, Kristin and I would both go in and they’d set us up with coloring books at a corner table, and Tommy the chef would make me ‘pasta with butter, no green stuff.’
Now, with Uncle John gone, my mom just wanted to be anywhere but home – anywhere she could go where he wouldn’t normally be. At home, she was constantly reminded that he wasn’t down the hill, about to come roaring up in his two-seater John Deere Gator.
He’d never be at Navona anyway – and it was easier to survive in a place where she wasn’t expecting to see him come around a corner that he never would again.
While she was there, I was in the woods thinking about where he was, and where I was supposed to go from here – and where my family goes from here. I thought about how much had happened and how different our family was in the ‘before times.’
By the time we moved into the house on Kymer Road, we had lived in more than a dozen rentals. In the early 90s, Pop got my dad a job in the scale house at Mount Hope, a stone and rock products plant in Rockaway. My mom cleaned houses and waitressed, and we lived simply. The happiest I remember my parents was when they had nothing but each other and us. One of my happiest memories of my childhood is seeing my father kiss my mother in the kitchen. He’d get home from work, still in his slacks, button-up shirt, and a tie she probably bought him, and he’d wrap one arm around her waist while holding his bag in the other, and as she’d lean back slightly to receive his kiss, he smiled as he planted it on her lips.
Holidays were simple: Nan and Pop would pull into our driveway on Christmas morning at 5 am, waiting for us to wake up so they could see us open Christmas presents. My dad would belt out Mele Kalikimaka and we’d giggle and toddle around to The ChipmunksChristmas Classics. The video camera was always recording us, sometimes my dad zooming in on my mom’s ass, other time’s zooming in on those brown eyes of hers.
During one of those early years, we lived in a house near the quarry — a rental with a large above-ground pool and a shed that my dad converted into a schoolhouse for us to play in, with old desks and chalkboards and all. We had a front stoop that overlooked Mount Hope Ave, where mom and I would sit and wave at the trucks as they drove by, happily blaring their horn at us as they passed. Off to the side of our front yard was a small barbershop that our landlord Pete owned and operated. To the right side of the house, a stand-alone two-car garage at the end of our driveway, where at four years old, I pulled myself up on the pink bike that my dad told me not to. He was working in the garage and needed to go get something in the house, and knew I’d been eyeing that bike all morning. “Listen punk, I have to grab something real quick, don’t you get on that bike. I’ll be only a minute.”
I nodded and smiled. As I watched the storm door to the house close, I pulled myself up on the bike and fell off just as I was about to ride away into the sunset. My right wrist snapped, and I screamed, seeing my mom hanging out of the kitchen window, and within moments, was in an ambulance.
Dr. Rieger, my pediatric orthopedist, probably bought a boat with the money he made from my escapades. On a hot night that July, I lie in my bed agitated after midnight with the pink cast up to my elbow that Dr. Rieger placed me in. I decided it was too sweaty in there and my wrist was probably fine under there.
And with all my might, I yanked off that pink cast.
Another ambulance ride ensued.
The next day, Dr. Rieger said, “Kelly, what’s your LEAST favorite color?”
He was so animated and seemed very trusting; with my four-year-old lisp, I said, “Lellow.”
And he proceeded to cast my arm at a 90-degree angle, all the way up to my shoulder, with fluorescent yellow casting.
My dad worked his way up through Mount Hope, becoming both an estimator and top salesman, the only employee to hold both positions.
With the losses my mom experienced as a kid and losing her dad when he was 67, she was of the mindset that we don’t know how many years we get, so we have to live now.
While my dad’s salary covered housing expenses, my mom continued to work as everything from a waitress, a school bus driver, and a cleaning lady, and later became one of the top realtors in the state — and that provided for building the memories she wanted all of us to have. In those early years, they took us on vacation every year to Grand Cayman. Coming from where both of my parents did, a trip to the Caribbean with their girls was a big deal for them. We’d stay at the old Holiday Inn on Seven Mile Beach. My sister and I would torture my mom, making her go back and forth between the pool and the beach. I loved nights at the hotel best — depending on the night, either Lammie, the Barefoot Man, or another guy Henry would play on the stage alongside the beach, twinkle lights ran from the huge tree in the center of the bar to the top of the stage giving just enough light to dance in, and even at four-years-old, I loved sitting at the picnic table to watch my parents dance — they could really dance. My dad would spin my mom around the floor, their smiles seemed to echo off of their bodies. I especially loved Henry’s rendition of ‘Wonderful Tonight’ by Eric Clapton, with his band’s own Caribbean twist of the song on the steel drums. The rest of the dance floor blurred as I watched them lost in their own world together and I felt so lucky that those beautiful people were my parents.
Some nights, the fire eater traveled over from Jamaica to put on his weekly show, limbo-ing under fire and eating fire. I couldn’t wrap my head around the logistics of this. Did he even have taste buds anymore, or did he burn them all off? I had so many questions. My dad saw him in the bathroom before a show once, and being the smartass he is, took out a book of matches and asked the fire eater if he needed a snack before the show. The fire eater grinned his big, toothy smile. I was enamored by him and fully did not understand how any of this was possible. I continue to be both captivated and bothered by these kinds of feats.
Now, all those years a distant memory, my mom worked as many nights as she could, staying out after work to go dancing with the other wait staff. Sometimes, she came home, and other times, my aunt and her cousins made sure someone took her back to their house for her to sleep off the memories Absolut and cranberry couldn’t wash away. Soon, I noticed that my dad spent all his evenings alone, sipping Jameson from a small glass while watching TV in what became known as his living room – soon, the family room became where my mom relaxed when she was home, and the living room became my dad’s.
My sister and I had different approaches to how we dealt with the circumstances of living in our house. If I internalized, Kristin externalized.
Siblings are the only ones in your life who know how crazy your childhood was and remembers it as intimately as you do, but sometimes remembers it differently because they experienced it differently. If you’re lucky, when you get older, those parallel tracks cross and suddenly how you remember the past isn’t as important as the fact that you lived it together and survived to tell the tales of both its wonders and its madness. It is only with a sibling that you can laugh over things that if anyone else knew made both of you laugh, you’d both be canceled before the first tweet hit its 140-character reprimand. It is through laughing at absurdity that Kristin and I found common ground somewhere in a battlefield of wrongs and rights.
Your perceptions of the same memory can differ entirely, but regardless, only your sibling can grasp the depths of the things that still make you ache.
At the time, though, we were children – and neither of us handled it well. How could we have? The adults weren’t either, and both of us tried to fill in the gaps to achieve what we wanted most: peace.
I knew my mom was in pain and I didn’t think it was my place to tell her what to do. I hoped that if I could ease her pain through love, acceptance, and well-timed comedy, maybe she would come back. The only time I remember falling apart was one night when there’d been a fight and after everyone retreated to their corners. I grabbed the liter of Absolut and hurled it off the deck, into the woods. No one even knew. I just needed to launch that fucking bottle over the railings and into the dark.
My sister’s way of seeking peace was to call out problems constantly in hopes that if it was out on the table, something would change. She and my mom spent our teenage years at war, with my dad usually coming home from work to the two of them in the midst of battle. As my mom sat on the deck self-medicating, Kristin screamed from the kitchen “what would your brother and father think of you?” I’d scream at Kristin for making mom cry and tell her that she is our mother and Kristin was not hers.
My dad never commented on my mom’s alcoholism other than to tell Kristin that she was disrupting the family peace and that if she didn’t like what happened under his roof, she could leave.
She went to live with Nan.
None of us were equipped to handle a life that none of us signed up for. Broken things further shattered.
Road to Vagus Playlist: