I saw my son at the stop light. On FB on my phone, in a photo of a group of boys at his step-brother’s birthday party. My Sammie. Except, he died on Sept. 18, 2019, and this picture was taken after that, at his mom’s house. Yet, my desperate brain grasped at fantastical hope as my breath stopped and my heart raced in one of those infinite moments our perception of time only subscribes seconds to, interrupted by the movement of cars with the green light I notice via impatient honking behind me, because they too need to get to the moments they’re chasing. I drove just outside Chateaugay and pulled the car onto the shoulder. My fingers trembled as I enlarged the image on my smart phone. It wasn’t Sammie, and tears waiting in reserves I reinforce with psychological dams to stave off incessant crying poured from my eyes and over my face, with my roaring scream – aaaaaaaahhhhhhh - like in the shower after a dream in which I saw a boy that looked like Sammie yelling (like my son did in the ICU in NYC), running across the top of this long building. That’s my boy, I shouted in my head and raced over as he ran off the edge, oh please catch him, and I did, Sammie, in my arms, my world healing like Tony Stark’s finger snap, my boy, cuddling him and kissing - a stoic face with empty eyes that are not my son’s, as I sob myself awake, and – aaaaaaahhhhhh - in the shower, hitting my head on the wall and staring at the handicap bar Sammie held to steady himself, our singing and laughter echoing out of the house, like my demands to rewrite the past, in the shower after the dream, powerless pleas clinging to winter’s breath in hopes they are carried to some part of the universe that could give me my son back.
Four long months. A second-by-second degradation within an unbearable life sentence. I thought returning to journalism would help. I couldn’t remain working in intensive care at the hospital in Plattsburgh, surrounded by reminders of Sammie’s last days in the NYC ICU, a witness to suffering a parent’s brain is not meant to endure, singing to my boy for hours, because more fentanyl prolongs the addiction that was created there, but when he screams and twists in withdrawals his heart races and pounds to the point it will stop again, and singing to him calms him just enough to skip a dose or two, so fuck you doctor saying I have to sleep, because Sammie’s Mama and I will do whatever it takes in that place we eventually made the decision that broke us, because everyone did do everything they could, and it wasn’t enough... No, I knew I wouldn’t be able to function in the Plattsburgh hospital where it started. Where I watched Sammie’s heart rate plummet and knew from being on the code team what was about to happen, witnessing a man I love and worked with, tears in his eyes as he performed chest compressions on my son, saving my boy for NYC…
I’ve been to the Plattsburgh hospital once since, to sign papers. I battled hyperventilation as I approached, heart racing and pounding, sweat soaking my clothing as I turned to my wife and pleaded like a terrified child, “I can’t do this.” I thought maybe the universe felt my anguish when I resigned and then logged onto jourrnalismjobs.com to find an opening a little less than an hour from where I lived. I’d spent nearly 15 years as a journalist. Each day had been like getting paid to play.
But we take ourselves, wherever we go.
Monday through Friday, departing the house at 8 a.m. to write stories, leaving around 9 each night and screaming – aaaaaahhhhh - in the dark driving home from Malone, face drowning in tears – aaaaaahhhhhh – as I pull over because I can’t see – aaaaaaahhhhhh – as I hit the steering wheel and beg – I want my son back, and, I want my boy back, and, I want him back, over and over and over until no sounds pass through my raw throat and I shake and sob and text his mother to ask if she screams, because it helps, but only for a moment, because the only relief no one can give, but telling them anyway when they ask what they can do – “Give me my son back.”
My brewing rage is not aimed at anyone. Sammie’s way of living joyfully and honestly and lovingly taught me to see people’s hearts and intentions and not to judge. I don’t blame anyone for my son’s death, despite the mistakes… I’m seething because I want Sammie not gone from my painfully empty arms. I miss the pressure of his slender (yet strong) frame stretched out on my chest and belly, on my back when I carry him hiking, straining my forearms and biceps as he bounces and squeals while we groove to I’m Yours by Jason Mraz. So, I run till my joints ache and punch the heavy bag till my knuckles bleed, and I scream – aaaaaahhhhhh - straining my throat one night driving home from work, pulling into the bar and ordering a shot of Knob Creek and a beer and scolding my wife texting with questions on how to help, because I hate that no one can provide the relief I need, placing my phone on the stool beside me to save her a seat and relishing bourbon’s warmth down my throat and in my belly as a man with a chest like a fridge approaches and eyes the empty stool, my brain saying in that moment if he attempts to take the seat I saved I’ll grab the back of his head and bash his face on the wooden lip of the bar, again and again, except he didn’t, relieved as the rage passes, but if he had…again in Taco Bell’s parking lot after someone nearly backs a mid-sized Nissan into my wife’s pocket-sized Honda Fit, my brain explaining as I pull beside the man waiting to exit his car that if he comments on my honking I’ll crush his head in his door, again and again and...
I don’t attach anything to the feelings and thoughts passing through me. My life has partially become about not taking on weight – I’m too heavy already - that will loosen my grip on the edge of the ledge, constantly learning what I cannot handle as I reposition my aching fingers with every choice. Like when my wife arrives at the bar, hurt in her own grieving and afraid for me, and I say I don’t care and take another drink and apologize – because I do care – and explain through a torrent of tears that I can’t expend energy on her in that moment, choosing instead to hold on, to survive, because my mind is on the verge of exploding into sharp fragments, pieces I won’t be able to put back together, shards of myself that will bleed others worse than the choices I make without hesitation, that selfishness literature on losing a child says to embrace if I’m to emerge on the other side in a way I can live with, or alive, even, knowing none of this is fair, not for me, not for those who endure me, and though it doesn’t seem possible, I suspect there’s a more desperate level of darkness in the abyss…I won’t come back from that, and my end goal is to #belikeSammie.
People sometimes tell me I’m doing that now, and I hate they don’t see me, make me feel I’m being dishonest and therefore dishonoring my son who was true to himself and with others in everything he felt. I remember the prior me, before laughter was filtered through grief, hollow sounds I don’t recognize, like the face in the mirror I don’t want to be, grieving two people, whispering, Be gentle. But I must lower walls to do that, and more pain waits on the other side, invaders that already won the battle but gain strength consuming the remains. So, I avoid the mirror. My reflection in windows. I cuddle with my wife, but only with her back to me and the distraction of a movie on. She knows if she turns to face me, for intimacy, I’ll cringe, and cry in the corner of the couch (where my son and I always cuddled) with Sammie’s Scout in the green t-shirt I bought my boy that boasts of adventures. I don’t see my step-daughter. Don’t play with her in the house we lived in with Sammie, hard and loud, like we all did, because I’m too weak to do that now without being overrun by the agony of the absence of my sweet boy. How cruel, to snatch that joy from a small child who lost her step-brother, but that’s me now, terrified and coming up short trying to #belikeSammie. Reminded of it when they don’t see me and say I am, like him. Or maybe I feel dishonest because they see slivers of me within the chunks that are most of me now that I hide. Because it’s ugly? But it’s real, and another reality is I don’t want to be here anymore.
Loved ones say life is still worth it. So, I chase moments that might convince me this agony isn’t pointless. I spent five days on the Long Trail, the first day with a man I love like a brother. We shared stories. He held space when I sobbed. I spent four more days on the Long Trail, singing and talking to Sammie in the thickness of the forest and over the ice-dipped tips of the mountains, feeling him with me, the weight of the pack on my back my son, like before. But always wanting him back more. Once when my mind suggested bidding the agony farewell, thoughts of sleeping uncovered on the trail and freezing in the night looping like lullabies coaxing me to my end, the ring of my cell phone startled me. Sammie’s Mama shared a message of our son’s journey now and I listened and sobbed, my beautiful boy, once again, lending strength, and I overcame, like he always did.
After that, I chased moments with Sammie in Vermont’s Green Mountains on the weekends, appearing out of my head to those I passed, this long-haired, bearded man with his walking stick, speaking with my Sammie they can’t see, singing to him, reaching back to caress his head and kiss his cheek during moments I carried him on my back so we could cuddle, racing my boy on the way down. Fortunately, Sammie and my daughter, his older sister Darby, taught me long ago to not concern myself with how others might perceive the moments I choose to live in. Lending strength to their fear only steals the beautiful.
But then I started 12-hour days at the paper, 14 counting the drive to and from work that soon included bourbon I sipped from a flask, because there’s no time for therapy, and what’s ugly becomes hideous without something, a choice to maintain my grip, though I also desire to let go, hoping no one smells the liquor but also not caring, but also hiding the sips from Scout in Sammie’s shirt in the back seat, and yeah, okay, I need more fingers to count the mounting triggers for the PTSD, and it’s alright I sometimes want to take my own life as long as I don’t. But wait, I’m telling stories again. The WWII veteran who lost so much in war and says kindness is all that matters. The preacher who overcame abuse and addiction and walks through life with empathy and focuses on leading her new flock to God through love. The middle school boys who saved their choking classmate in the cafeteria…except after I interview the boys I’m guided to where it happened and surrounded by children Sammie’s age as sweat dampens my undershirt and forehead, heart racing and pounding, and I know the principal sees my hand shaking as I try to take notes and ask questions that make sense, pausing to breathe deep and slow, stumbling out and collapsing in my car and sobbing. Does my editor see the tears while I’m at my desk writing? Do the women in the office near the men’s room hear me bawl over the sink? Do the people outside the bathroom where I’m on assignment hear me trying to catch my breath as I cry after seeing a father say to his boy, “give me five,” like I did with Sammie, and still do with the air, pretending my son’s hand is there, catching our fingers together and squeezing as I say, “Yeeaahhhh,” my right hand giving my left hand five, so I can feel pressure there again… They must see my face when I exit. None of them will look at me as I sit taking notes. Me, worrying again what others think, lending weight to their self-involved impatience and judgments and lack of empathy, and fuck, now I’m creating stories and judging. Failing and not strong, like when my boss texts while I’m driving to work that I need to stop where they found the body of a missing boy, except I’m terrified and pull over, because, another attack, and no, please, another parent can’t hurt like me, and just give me my son back, taking another sip from my flask, and another, until maybe I’m a danger and might take a loved one from someone else, and fuck man, you had maybe a drink a month before this. End it! The pain…just take off the seat belt and drive fast and into…But wait, my boss is going to cover the story, and I make it through another day, until later that night, taking a corner a little too quickly, like a race-car driver…and I remember pretending to drive fast with Sammie in the back seat, laughing and squealing and so much beautiful… I don’t remember parking, but I’ve been crying in the car for 20 minutes, and now I’m late, rushing in relieved to discover they haven’t discussed “that issue” yet, but clearly have an “issue” with my appearance, and the tears I’m wiping, and my bloodshot eyes and how I can’t respond when one of them gruffly says, “Yer clock not workin’,” because if I open my mouth, the sound will scare them.
But there was that calming moment. That time I got lost and called it a night. I plugged my address into google maps and ended up on a Class-4 road covered in snow with no hint of tire tracks, falling apart in places, with a sign that says closed for the season, except I can’t stop and turn back into that slippery and steep, initial descent, winding 10 miles an hour over three mountains, barely breaching high points as my tires spin, nearly sliding off the road infrequently marked with seasonal camps, a blackness in my rear-view mirror that wants to swallow me as I take inventory of my clothing, because I might have to walk as the temperature nose-dives…and the realization I could die is more peaceful than anything since my son died. No more pain. No more trying to envision a future without Sammie. All my dreams included him…But then I panic, because on the drive home at night I follow a route I found that takes me past Sammie’s mom’s house so I can sing to my boy as I near the home and call out, “Hey boobers. Hey Sammie-Sam. I love you, buddy,” and sometimes for his mother and I, it’s like Sammie is on his week at the other’s house, and Monday I’ll drop him off to her, or she, to me, and I know that’s not real, but Sammie needs to hear me sing and say hi tonight, clinging to things now, like not moving his toothbrush in the shower, and pictures and printing and saving them in multiple places in a panic, and crafts he made at school, and toys he touched and clothes he wore that no longer smell like him because I did laundry before…and then I’m past the Class-4 road and scream – aaaaaahhhhh - because I made it, and I don’t like this life with the only freeing thing that I no longer fear death.
End it. But I can’t. I’m a father, and my daughter is already grieving losing her brother. Darby helped raise Sammie. I see him nestled in her lap as she strokes his head, the love in their eyes for each other. Darby and I recently cried together at the bar over a drink as we shared stories. Like the time years ago she called in a panic and I rushed home from the newspaper to find them both covered in poop, Darby, half wrestling, half cleaning her brother, who giggled and tried to wiggle free as I stood there a few seconds and laughed, my heart reminding me again of what I already knew - that I love being a father above all else. Ask me what I want to do, and my answer is always, “Play with my kids.” I ain’t sheltered. I’ve been a carpenter, landscaper, taught in prisons, journalist, factory worker, editor, pizza and sandwich maker, soldier, mentor, painter, even held a job for a few years in a hospital that had me one second, drawing blood, another second bathing a fragile patient and yet another second performing chest compressions. I hike, kayak, play basketball, earned a black belt and competed in full-contact fighting tournaments, strum a guitar, fix old typewriters, run, dance, hunt, fish, travel, volunteer, make walking sticks…I don’t have enough time for all the things I love, yet absolutely nothing compares to time with my children. I’ll never forget when I saw crown, amid the primal roars of childbirth my daughter’s tiny head of curly hair, in my arms, my first love as the universe pulled me aside and whispered, “You’re welcome.” I had a special set up on the couch, pillows piled on either side of me in case she rolled, my daughter, sleeping on my chest until she was too big. And then Sammie came – “You’re welcome” - and slept on my chest too. I still remember the last time he slept there, shortly before…
My children provided me the strength to shed addictions to dysfunctional coping skills forged by my childhood sexual trauma, to become a me I loved unconditionally. Not perfect. But a me I was proud of and celebrated. A me who loved unconditionally, even the ones who hurt me as a child, and without any expectations of those individuals. That is a gift. Fatherhood never felt like work, though I knew the greatness of the responsibility. I was beautiful at being “Dad” and “Pa,” and selfishly felt blessed that Sammie would never leave the house as typical children who become adults do. I had so many more adventures planned. I was going to buy a truck and show Sammie every inch of the country. He loved trucks. Sammie and I were going to hike every mountain. Kayak in all the rivers and lakes and oceans. I couldn’t put my kayaks away for storage this year. They’re slumped under snow because if I go near…all I can think of is that empty space in front of me that was Sammie’s. I can’t imagine floating across the water without the pressure of his body in front of me, without his giggles and him squealing “Pa” excitedly (and more recently deeper with his little man voice) as I take us over waves so big we soak ourselves.
I knew Sammie’s heart episodes could get worse. I figured he’d get a transplant. We’d continue our adventures into his 20s, 30s, 40s. Sammie thrived. He had so much energy, hardly napping unless we wanted to cuddle. He baffled doctors, who said the love we surround him with, and more importantly, Sammie’s will and strength were the only explanations for a boy who lived so joyfully and lovingly and with so much energy. There were no outward indicators of the heart inside Sammie, other than the heart episodes and seizures once a month or every other month. More than 85 percent of the time, Sammie defied expectations. And when he did struggle, he never complained, choosing instead to smile and live lovingly, appreciative of his beautiful life. He could get frustrated, like we all can, but if you monitored him beside “typical” individuals, you’d quickly see that Sammie, despite the adversity he faced, was overwhelmingly more joyful and pleasant in comparison. My son taught me I can choose to live life lovingly and kindly and joyfully, with empathy and strength.
I remember a surgeon from overseas, a member of the heart-transplant team in NYC, said Sammie would not be a candidate for transplant where he was from. Not a contributing member of society, because he’s not independent and doesn’t financially feed the economy. When I consider the rampant isolation in a crowded world, the indifference to cyclical struggling, the pursuit of “things” at the cost of human decency, I’m disappointed by that definition of a contributing member of society. The doctor seemed to agree that the world needs more models like Sammie and his way of living that would go infinitely further in healing society than concentrating on money matters.
I used to be so strong. I need to find a way up. To #belikeSammie. I remember when he’d sense (or see) me struggling. He’d climb into my lap and gently put his hand on my cheek. Snuggle with me a bit. He understood empathy. Does he feel my worsening agony and desperation now? Am I stealing time from his new adventures?
I recently left my new journalism job as part of choices aimed at helping me to the other side of this in a way I can live with. I’m in Vermont now, cradled by my siblings and the Green Mountains. My wife says I sometimes let my guard down when she’s here with me. I laugh and hold her tight. I believe her, though it’s difficult for me to see through the ever-present agony glaring at me with its jagged teeth consistently shredding more of my heart. Sammie’s Mama thinks I didn’t have enough support in New York, beyond my wife, who is also grieving. I found a part time job up the road from my brother’s. Stocking the cooler, sweeping floors and taking out recycling and trash at a little store nestled on the crest of a hill, owned by an Indian family, three generations living in a log cabin. I long for their community. My sister took me to my first meeting of Compassionate Friends, a group of parents who lost children. I sobbed all three times I tried to talk about Sammie. I worried the group could become one of those misery loves company things, like how you can sometimes tell where people are in life by the music, books and movies they immerse themselves in. But it doesn’t feel like that. I’ve seen too many people let logic overrule their feelings to the point they lumber around like clubs, smashing everyone over the head with logical suggestions instead of providing empathy. And at that first meeting, I saw pure love in the eyes of one mother who lost her daughter, leaning forward as I spoke and trembled, and in the smile of another mother who lost a son and gently touched my upper arm for a few seconds after we held hands in a circle at the end of the meeting. I felt connection and empathy there. It comforted me, to know it’s ok I’m a mess as parents in the group uttered, “It only just happened,” and how consumed and overwhelmed I must be…not in a good place. I think that’s why I currently find the the Indian family so appealing, agreeing when they say they’ve noticed that in the United States, most people seem intent on surrounding themselves with “things” over loved ones. Maybe I’m waiting for someone to save me, because I am failing saving myself right now?
I created a purpose to keep myself going. I plan to write two books. A children’s story too. All connected to telling Sammie’s story. I’ll pursue traditional publishing with a goal of further growing the #belikeSammie Award, possibly create a foundation. I also hope the process will help me want to live again, because I promised Sammie I’d be strong. For myself. For loved ones. I brought my heavy bag. I’m running. I scream. Now that I have the time, I’m connecting with a grief counselor. Something…because the agony is with me every second in everything I do, and I’m exhausted. I can’t even catch a break in my dreams. Shortly after Sammie passed, I’d have a reoccurring one, always in a different setting, in which I’d see Sammie and be so happy, but then I’d notice something off about my boy, and then I’d remember he’d passed and wake up crying. There are dreams like the one with my son screaming and running off the top of the building. I also sometimes dream Sammie is in my arms and appears fine, until something tells me he only has two weeks to live, and I hold him tight until I wake in tears squeezing myself. My dreams aren’t difficult to dissect. No matter how hard I tried and what anyone says otherwise, I feel I didn’t keep my son safe. Thankfully, I don’t replay in my mind whether anything could have been done differently. I’m already tortured enough.
Sometimes I think when I’m done these books, I’ll also be done. It’s a peaceful thought. Living this pain seems pointless. The absence of Sammie is unbearable. Maybe being brutally honest and writing this is a first step toward the other side. Usually a blog takes me a few days. This one has taken months to write. I break down every time. But in the past, exposing myself through writing helped loosen the grip of what seemed to control me. Sammie was honest in everything he did. I want to honor my son. I’m forcing myself to do routine things every day to recover – create - myself. But what if I’m in my own way? Not allowing myself to move on, because the level of acceptance I know logically I’m afraid to reach emotionally. By creating this new me, I must wholly accept an absence so overwhelming I sometimes desire to deny that most primal animal instinct to survive. Or maybe part of me feels moving forward betrays the son I feel I couldn’t save? I spent nearly 13 years basking in the beautifully blinding purity of Sammie’s unique light, and perhaps I’m not strong enough to live without…to learn and share…how Sammie’s condition and others like him who seem so simple at a glance, in fact live more brilliantly than most typical people saddled by bulging baggage they could unpack if they had my boy’s strength, but instead crowd everyone out endlessly dressing themselves in clothes that don’t fit. If I could walk with Sammie’s lessons into a new reality… Or maybe this loss is just too raw for me still, and I’m expecting too much of myself at this point, allowing to seep through my cracks expectations, opinions… I must remember, I am the captain of my ship, guide it the best I can (with all that I can) through these raging waters, with acceptance that I could break against the rocks, plunge over the edge and drown.
All I know, right now, for me, there’s nothing so crushing and agonizing as the weight of my empty arms…
My son could pass any time. I’m not wading in a puddle holding frayed jumper cables with bared teeth, offering an electric embrace. But it’s a good hook. Snagged me. ‘Dad joke.’ I’m a dad, and this truth surrounding my son burrows in an enclave of my mind, below a collection of scenarios I could spend hours and days and months playing out, of what could happen to Sammie. Probabilities that don’t pay rent, running up a tab that keeps me in debt. Past-due bills on my baby, my boy…
… becoming a young man whose upper lip I shave in the shower, because he can’t manage on his own as I sing and he giggles and grips the handicap bar, hot water kissing our flesh, shaving him too because I don’t want him looking too grown yet - that bundle born early with the weak heart and its unfettered capacity for love, as eyes pry themselves to tiny slits that note a glimpse of me, standing outside the glass looking in - in a society where their toleration of him fades with the cuteness they ascribe to him.
It doesn’t feel good to imagine people feeling uncomfortable around my child one day. Is it in their nature? Don’t remind us of our fragility. Perceived flaws. We are all more vulnerable than we admit, and we’ll only tolerate a reminder and offer it compassion, if it’s cute. It’s ‘natural’ any us could pass any time too. We don’t escape that. Keanu Reeves said, when asked what happens after we die, “I know that the ones who love us will miss us.” The chances my son could die at any moment are far greater when contrasted with typical life expectancy. Samuel Benoit Bartlett was born with 1p36 deletion syndrome. His mother and I, upon hearing the diagnosis, were like, “What the fuck is that?” It wasn’t discovered that long ago. We’re still learning about it. The unknown is terrifying, especially when it’s bound to what you love most. Like what the fuck is his life expectancy? I try not to dwell on that, but even if I avoid it all year, that one day, those seconds I think about it, defeat me. There’s nothing safe about love you give yourself completely to…
…this fragile child not much more than three pounds, seeing me watching him from beyond the glass as I muster strength and say “I love you,” that nose that I want to be mine - his eyebrows are his mom’s, and so much his strength - along with the cheeks and ears as we hold him those stolen seconds we reclaimed after they said not until later, because he could die and must be rushed by the team, in his box like Wonder Woman’s plane, over the bridge that connects to Boston Children’s, where they’ll work toward us holding and kissing him more and bringing him home, our son, home, “yes please” so much that we want, overwhelmed and grateful and scared in that moment they see something stronger in him, so maybe it’s ok to hold him a few seconds, our reason in our arms, although maybe too it’s because he came quick (after days of prodding because his heart was too weak to wait longer), a foot on my shoulder and a push, just four of us when he slipped out sooner than they’d just projected, the team not there yet, so yes, by all means, hold him close, maybe for the last (only) time?
Sammie was born Oct. 22, 2006, in Boston, with its rush-hour roads like buttered spaghetti noodles stirred in a bowl. Lost and honked at in this city with the best doctors. The team extended us an extra-special invitation. They didn’t know what was ‘wrong’ with our child (in his mother’s belly), affecting this world he’d not met. Just that his heart beat too shallowly and too quickly. “I’ve never seen anything like it,” said the first doctor in Plattsburgh, who looked as you’d expect, lanky, white coat, frazzled, pale gray hair, spectacles on the edge of his nose. He’d been practicing medicine more than 25 years and sent us on the ferry to specialists in Vermont. Vermont directed us to Boston Children’s…
…and the team explaining our puzzle of a child and his pieces that don’t fit, that they don’t know how to arrange, which is difficult to balance with my early capacity to love him and need to see a picture of him, Sammie, Sammie-Sam, Lilboobers, the latter a name his mother invented that I adopted because it’s yet another way I tell him I love him, and I want there to be limitless ways, each instantly rendered inadequate when love grows so fast you’re sometimes chasing it.
What if I can’t hold him anymore? Hear him laugh and say “Pa?” Right now, writing this, my heart breaks. It’s heavy, what the brain can create as experience. “Stop.” It’s too much. Instead, I focus on…
…hugging and kissing and being, and anything but him not in my life, because losing him or his older sister – once the prospect of losing her existed (before Sammie’s birth), an erratic message from my first wife, my daughter’s mother who never should have had alone time with her, halfway ‘cross the country, and in that moment the fabric of my mind tearing, a fissure in my brain as I scream at my second wife to tell me my daughter’s okay, that event the reason “K-PAX” with Kevin Spacey holds space in my heart (despite Spacey), a testament to what would happen if my sweetest girl had been taken, my mind creating another home to set my hat, because the place I was almost hurled to looped agonizing deaths – is not an option.
1p36 deletion syndrome is a congenital genetic disorder. Sammie’s mother and I were tested. Not carriers. A fluke the medical field attaches theories to. Children and adults like Sammie are moderately to severely intellectually impaired. 1p36 is characterized, to varying degrees, by delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features. Sammie underwent open-heart surgery at Boston Children’s at 10-months-old to repair a ventricular septal defect and atrial septal defect. No words describe what it feels like kissing and squeezing your child, knowing he might not survive as they wheel him away to cut and crack him open. His mother and I waited in a moment that whispered, “I could end you.” I felt the power in the judgement the surgeon carried as he approached post-procedure. I went stiff and held my breath until he said it had gone well, considering the prognosis. But when he took us to our baby…
…code alarms hammer the silence, and it can’t be us, because he said it went well, yet now he runs with the others toward Sammie’s bed – monitors and cables and machines for breathing and beating - and it is us, pausing in our recognition of what that means, his mother, only for a second, because this is her baby, and she’s always been stronger, going to him as I stumble against the wall in the hall stretching in my head - taut and close to snapping (again) - the distance to where they work furiously to make sure Sammie will still please be here with us, because I can’t lose my boy.
I meditate to the image of when he opened his eyes for the first time and weakly grinned back at me smiling down at him as I rubbed his forehead with my hands scrubbed clean, leaning over the rails as close to him as I could.
I revisited my son coding post-procedure during my first code as a critical-care technician in my hospital’s intensive-care unit - the job I’ve remained in longest since leaving journalism. I knew working at the hospital I could be involved in a code. I wondered how I’d respond. Imagined in my head acting heroic. You don’t know ‘till it happens. My first 12 months at the hospital were spent mostly repositioning and cleaning patients, taking vitals, drawing blood, feeding and walking them to the bathroom, changing bedpans and dumping urinals, scanning bladders and charting. There were also one-to-ones to protect mentally altered patients from themselves. I’ve been punched, bitten and doused with liquids, though typically you sit there in case and put more energy into staying awake than anything else. Intensive Care is a different beast. My first week off training, I heard, “Code-99, Intensive Care.” My colleagues…
…racing to the room, and it’s Sammie in Boston and I’m scared, but unlike then when he needed my strength, I run too, with the doctor and nurses, the family outside watching as I stand on a stool doing chest compressions, by my third turn in the rotation, dripping sweat onto the man, whom we save, still in the room I tell another technician something funny, for a few seconds laughing, quietly but visibly, because it’s my first time, and adrenaline and what I was part of, like in ER with George Clooney, except those are not cameras filming so viewers can gape later in their living rooms, they’re frightened family members of the man we saved, watching as I alter my face to exude concern and compassion, after, the director in passing says be aware of our surroundings, and I tag her suggestion to the mental note I took as soon as I retracted my giggle, knowing she’s not worried nor criticizing, because I was new and proved myself.
I’m grateful I’ve remembered during the chest compressions since, to be aware of my surroundings. Not everyone makes it. There’s sometimes hoping and praying family members there when that happens too. I know how families of patients feel. Before my son, my daughter, who struggles with an aggressive form of Crohn’s disease, introducing me to intensive care, surgeries and sleeping in an uncomfortable chair beside her hospital bed every night for an entire summer, talking each morning with my (teenaged) baby ‘till doctors rounded, while she naps, running from the Vermont hospital, destressing and pumping my legs on paved and dirt paths along Lake Champlain, heart pounding as I sprint back up the hill to the hospital to escape that constant sense of teetering toward panic and to be with my little girl as she regains strength for surgery to remove things inside her she uses. Staff who lifted mine and my children’s spirits during hospital stays, despite unaltered prognosis’s, nudged me to pursue the medical field after journalism. I’m privileged to care for people at their most vulnerable. A passion that is also a penance that this story’s not about.
Sammie will always need people to care for him. He splits his time between his mother and I, a reality tagged to the penance that, again, this ain’t about. They released him home after extended intensive-care stays in Boston and Vermont post-birth. He was barely five pounds. Weak and fragile, with an NG tube to feed him that his mother and I switched out when needed. You’re never told, when you discover you’re going to be a parent, about possibilities beyond changing diapers, like measuring tubing inserted through his nose (head arched just so, feeling for that slight give), and into his stomach. Sammie barely avoided surgery for a permanent peg tube in his abdominal wall when, at the last moment, he gained enough strength to eat on his own. Physical, speech and occupational therapists worked with him in the home before he was school-aged and continue to support my boy. He sees a pediatric cardiologist every six months for his heart, and a neurologist for seizures. No doctor who has cared for him had heard of his condition before Sammie. They’re near as clueless as I imagine all 1p36 parents were when first hearing “1p36 deletion syndrome.” Our children are fragile mysteries thrust into our lives that make us stronger than we imagined possible and are stronger than we’ll ever be. Sammie’s 12 now, though more like a toddler. He can walk unassisted, but not too far and not without someone beside him in case he falls over. He mostly crawls and walks holding onto something. I honestly don’t know how much he understands beyond what is obvious, like when he signs he’s ‘all done’ eating or I’m ‘all done’ doing whatever is now annoying him, like getting in his face too long to tell him how much I love him while tickling him. He has fewer than a dozen words he’s able to use to express himself, “Momma” and “Pa” among them.
Sammie was recently evaluated for a heart transplant. The numbers aren’t good. For example, a normal heart’s ejection fraction is more than 55 percent. Ejection fraction is a measurement of how much blood in the left ventricle is pushed out with each heartbeat. How well your heart pumps out blood can help diagnose heart failure. Below 40 percent may be evidence of heart failure. Sammie has dilated cardiomyopathy with an ejection fraction of 19 percent. He has tachycardia and low blood pressure. His heart is extremely enlarged and over-working. His pediatric cardiologist reviews the echocardiogram and expects to see a sickly child, who barely moves, exhausted and on the verge of passing out and/or vomiting. Instead, Sammie laughs and squeals excitedly and yells when angry. He moves quickly and with purpose. He’s all wiry muscle, can hold himself in a crunch for extended periods and eats like food might run out. Doctors upon meeting him doubt his medical background. Sure, they think and grin, your child clearly faces struggles in life, but you’re being a bit dramatic mom and dad. Then, they see blood pressures and heart rates, review echocardiograms and files, and they are in a stir, announcing to us - as if they were the ones to enlighten us with his diagnosis and prognosis, like they discovered 1p36, and holy shit we must save your child - that our “son is really sick.” When we don’t feign shock and awe, they view us skeptically, almost accusatory, and repeat, “Your child is sick!”
The transplant evaluation resulted in Montefiore confirming the obvious: Sammie needs a new heart. But he’s also got a damn good quality life, especially considering, and they were hesitant to exchange the heart-failure symptoms he’s tolerating (for now) and thriving in many ways with, for another host of transplant symptoms, that perhaps negatively impact his quality of life. His life expectancy’s unknown. Maybe don’t mess with the good he’s got. He has more good days than bad. It’s the support and love he receives, enhanced by the massive amount of love he provides and exudes, this boy with the sickly heart. We don’t possess adequate tools to measure the value of love. He’s testament to its power.
His mother and I agreed with holding off on a transplant. It’s a gamble. Besides the condition of his current one, roughly two years ago he started struggling with episodes that present as supraventricular tachycardia (SVT). A few years or so before that, it was seizures that came in waves, some – either one long one or several short bursts - lasting an hour or more, eventually knocked out by emergency meds. Over time, we stopped bringing him to the emergency room. We administered the prescribed emergency drugs on our own and then monitored and cared for him during a typical two- to four-day recovery period, keeping him hydrated, ensuring he doesn’t asphyxiate while vomiting, regulating fever to prevent seizures from returning. These ‘typical’ seizures occurred every few weeks or so for a stretch and then eventually decreased to every four or five months or so.
Then, hello SVT, which is a rapid heartrate that develops when normal electrical impulses of the heart are disrupted. Frequent episodes can weaken the cardiac muscle over time. Sammie’s heart is already failing. The episodes started occurring monthly, sometimes for several days at a time, anywhere from three to nine or more a day. Sammie, I imagine thinks his heart is going to explode from his chest. An electrophysiologist at Montefiore in NYC aggressively tried to trigger the SVT for a few hours to attempt an ablation in hopes of stopping the episodes. Yet another time, his mother and I kissed Sammie before they wheeled him away after a doctor with a British accent matter-of-factly said the procedure is risky given Sammie’s heart. There’s a chance he could end up on ECMO, a machine that bypasses the heart. A last resort which hardly any children with hearts like Sammie’s come back from.
The electrophysiologist was unable to trigger SVT, yet the episodes, registered and recorded, continue. Specialists are perplexed, and in their defense, Sammie’s condition is being studied. Most of Sammie’s medical data is collected, along with that of other children, to help create a clearer picture of the syndrome. Does his heart cause the SVT-like episodes? Is it a new type of seizure that sends his heart rate as high as 240? A normal adult heart rate is 60 to 100 beats per minute. Sammie’s able to respond through his terror during the episodes. Specialists say any one could be his last. His heart can only take so much. Sammie comes out of them on his own and with help, through emergency medications and actions like dipping him upside down so he struggles up and creates pressure in his chest. Sammie has more good days than bad, but imagine, several times a day, sometimes a few days a week, one or two periods a month…
…his terrorized eyes furtively seek me, reaching for me, my boy unable to speak, needing me, “Pa,” to calm this heart pounding under my hand when I pull him against me like it will burst from his chest with each hammering beat, Sammie wondering as I dip him (because he can’t follow commands like, “grasp that and bear down,”), why I keep letting him fall toward the floor, pleading without words, grabbing at me as I worry this one is the one his heart can’t handle and reassure him everything is alright, almost panicking when dipping doesn’t help, waiting and opening emergency meds, 30 seconds, a minute, more than two and even three minutes that contain eternity in each second of the threat to take my son, feeling my head stretch toward a split, like it nearly did that time with my daughter, like Kevin Spacey in K-PAX, except Sammie pulls through each time, my boy, exhausted and sometimes vomiting and passing out, making sure he does not asphyxiate, because he’s not strong enough to move his head when he pukes, hours and days monitoring breathing and heartrate and hydration with a syringe, but carefully, because what’s the point in protecting against choking while vomiting if he aspirates and gets pneumonia, which kills kids like Sammie.
It’s the same for his mother, when he’s with her. We support each other and belong to an online group of families from around the world with loved ones diagnosed with 1p36 deletion syndrome. That network is vital, especially when a parent loses a child. Too many angel wings. All us parents suffer from PTSD. I can be a dick when my energies are needed for stressors related to other people I love. It’s not fair to them. There was a period I worked overnights in the ICU and sometimes saw Sammie in the hospital beds, in place of the patients, on a ventilator, hooked up to medicines and monitors. Yet this experience has helped me come closest to the best version of myself I can achieve. A version I didn’t know was possible. Witnessing Sammie’s strength, consistent happiness and capacity for love, despite his struggles, has created within me an outlook on life, a perspective, I’m grateful for. And ultimately, all this is eclipsed by the other parts of life with Sammie…
…beside him on the couch or the bed, and he reaches and caresses my cheek, loving me as big and pure as I love him, bigger, because for all Sammie’s heart’s failings and weaknesses, its capacity to love and inspire love is unmatched and uniquely his and that of others living this unique reality, providing the gift of their life. Sammie, with that serious glance that makes me want to know what’s going on in his head, and all the beautiful tales I tell myself it might be. Sammie and an old man walking by with French fries, my boy’s head snapping to follow his favorite food when all of us with a stake in his life wonder how much and how quickly he pays attention, seeing he knows more about what’s happening around him than we realize as the elderly man who is part of the discovery seeds our staked claim with love when he notices Sammie’s interest and asks is it okay to share, tears burning my eyes when this man doesn’t care about the drool on Sammie’s hands in his fries, the old man responding to the eager sounds Sammie makes between mouthfuls, and in so doing, inviting my boy into the world in the back of my mind I worry people might not welcome Sammie to, excluding with their fear and lack of understanding, but not this old man with his fries watching baseball under the sun. Sammie, with the way he says truck “chrk” to anything bigger than a car and loves to ride the lawn mower and in his step-father’s pickup, which is why I fantasize about buying a big, shiny, new truck with the money I could make if a publisher buys a book I write. Sammie, and every time “I’m Yours” by Jason Mraz comes on the radio, stopping what I’m doing to scoop up my boy and dance, fueling a thousand lifetimes with that feeling as he bounces and laughs and says “Pa.” Sammie, sticking his hands down his pants as boys do and as men would do more too if social constructs indicating that’s inappropriate didn’t exist. Crossing his legs - the “1p36 cross” parents in the group call it - when he’s tired and sleeps. Bouncing on the trampoline. Walking around the yard holding my hand and saying “Pa” over and over and over, with me, saying “Sammie” back, though really, we are mostly just saying “I love you.”
And Kayaking with Sammie…
he is loving, and hikers on the trails in the woods peer through spaces in the trees to witness what they want to be part of too, pausing in my paddling, reaching around and pulling him against me when he’s strayed too long, feeling him close as I exchange the rhythm of moving us forward for the rhythm of his heart beating.
Sammie loves the waves. The muscles in my arms, chest, shoulders and back burn when I push us toward big ones. We nearly rolled once, and since he doesn’t understand, “You gotta hold your breath,” he might swallow water. That won’t stop us. Sammie has the right to experience life to its fullest in all the ways he can too. You don’t live life when you do it in fear. I can hear Sammie howling wildly now as the front of the kayak smacks the water that splashes his face, his ecstasy breaching the waves, through the trees, echoing off the rocks.
I push my arms till they ache when I kayak by myself too, dashing across the lake in spurts. At a certain point in each clip, I balance the paddle across the kayak in front of me, the blades cutting the air licking my face as I lower my hands and slice the water. I close my eyes and sink into what my son feels when he’s tucked in the boat in front of me. I open them and watch my hands dance in the water. Becoming his hands and mine. Becoming love.
A world lived in the shrub I crouched behind. I need to commune with you. But hiding beside the steps leading to the front door of the university building where Russell Banks waited for faculty members, I needed the renowned author’s signature more. Except, I was only concealing myself in my head - that part of me that was the me I’d known that cowered from the me assuming control of the connections in my brain – behind the shrub that hardly reached my chest, leaving me looking like a man trying to hide behind an inadequate bush he appears on the verge of interacting with, because let’s be honest, calling what I was doing crouching was generous. It was more like the bowing I did in martial arts, though if I’m gonna be completely straight-up, it was more like the hunched over straining of constipation. There was nothing anonymous about me, a truth further enhanced by the following facts: A) I was the education reporter for the daily newspaper, which B), ran an opinion column I wrote that featured my grinning mug, and C), I’d interviewed most of these professionals over the years.
But in my head, as I slightly squatted (again, generous) to better hide, something fantastical beckoned me into the shrub. And that’s what approaching professors witnessed. I see them now as they saw me then. I hear their thoughts that day. “Is that Stephen Bartlett? Is that the Press-Republican’s education reporter trying to hide? Why does he look like he’s conversing with the shrub?”
I must have looked creepy too, because though they’d spotted this caricature of myself I’d created, they still startled when I bounced like a burned Pop-Tart – pretend Kellogg’s made a Ben & Jerry’s Phish Food flavored pastry - from behind the shrub that hid a little more than a quarter of me, proffering three Russell Banks books as I vomited stream-of-conscious explanations as to why I needed the writer’s signature: “Get me his name,” and, “Do it,” and, “Now,” and, “Sign on title page,” and, “Stars align,” and, “Stephen with a ‘ph,’” and, “You know me and I know you, now there’s this thing I need you to do,” and, “Books are heavy and shrubs talk.” Their eyes opened like the lids were attached to sling shots, their bodies jolting back the same way I retreated to the shrub between prospects, not-so-anonymous me, thinking I’m hiding - despite the obvious futility of my attempts – as I carry on with a shrub. I recognized the fear in their eyes. I’d become this wild thing, obsessed with Russell Banks’ John Hancock, because fixation is one of the tendrils illness wraps ‘round the mind’s circuitry until thoughts take every new twisting path formed except the one intended in each strenuous birthing of logic until the afterbirth spectators try to hold in their hands and form into something rationale spills through their fingers and splatters into messy puddles that, at that point, can only be mopped up and wrung in a bucket to be dumped outside and forgotten. Except wait, we’re already outside…
“Your head is sick,” the doctors said. But is there a chance that might be a matter of perspective? If not, can we, with adequate lung-capacity, live in vacuums?
Each time I shrugged off the shrub’s sanctity and – ta da – revealed myself, professors said things like, “I can’t,” and, “No,” and, “Stephen, this is inappropriate.” Their declinations emboldened me as sweat trickled down my back and crack under the sun’s watchful eye, until my fevered persistence was as glaring as a man trying to hide behind a shrub he seeks to telepathically commune with, a somewhat high-profile man in the city with the love-hate relationship with the lake it hugs with its arms of fast-food joints and high-end to low-end housing and hopeless hotels with screaming inside that social services utilizes to shelter low-income families needing salvation but given extensions they default on. If only these professors could see I needed Russell Banks to sign my books, because Cloudsplitter and John Brown took me on an epic journey that left me wanting to change the world, and Trailerpark spoke to me because I’d lived in a trailer park with my daughter in the Midwest after her mother split, and each night my little girl and I walked hand-in-hand making up stories about the people in the trailers, and therefore Russell Banks and I were cosmically bonded, and I’d read The Sweet Hereafter too, and had sex as acrobatic as Cirque du Soleil for Dummies after watching the movie adaptation during a date, so, in a way, Russell Banks had been my wing-man that night.
But instead, the professors I surprised made clear their discomfort, which infuriated my fracturing head believing my behavior was acceptable and reasonable and rationale, and motherfuckers quit being difficult and stubborn and unreasonable, because once Russell Banks (who was teaching a one-shot class) inscribes the books I purchased at the local bookstore all will be good in the world.
Except this one professor - in his suit that hung on his slender frame in a way that presented him as comfortable and relaxed - who looked at me with his soft brown eyes and guided me away from the congested faculty traffic that darted toward the steps like rush-hour, because this was a big deal (or were they avoiding me). It was a Russell Banks’ event I considered crashing to announce my request like the DJ introducing the wedding party at the reception, except it would be me presenting myself and I wouldn’t have a microphone, so I’d have to yell, and that was still very much an option in my head if my current strategy failed. This professor, whom I respected and considered a friend, gently asked, “Stephen, are you alright?” Holy fuck, I thought and then said, “If you’d listen to me you’d understand.” “Would it be alright if we went somewhere and talked?” “But Russell Banks is here, and I need him to sign my books. Could you please have him sign these books for me? I’ll wait right outside the door for you to come out. Deal?” He hesitated, as I grinned big as I could and forced my eyes open as wide as possible to show him the exaggerated whites of my eyes and teeth (that meant no harm), so I jerked away and went after the next unsuspecting professor, who still jumped – what the fuck people - despite the fact this time I didn’t leap from behind the shrub, and then the next one and the next one and the next one…
Eventually, I stood alone outside the door they’d locked (and I wonder was it because of me) and paced the steps, plotting and racing the scenarios in my head that might result in Russell Banks signing my books. There was more than mere mania behind my pursuit. This obsession was also founded in a desire to accumulate a collection I could pass to my grandchildren – if I’m ever granted any - one day, much like the antique typewriters I snatch up and rebuild to behold and bequeath to descendants too, because maybe all of it will be worth so much money one day, and I’ll have contributed to the security of loved ones and make up for all the ways in which I squandered my familial investments when I was raving and lost and not worried about finding myself, because holy fucking whoopee it’s fun living madness in the moment. Anyway, at times while I fidgeted and switched hands holding the books and rehearsed out loud the iron-clad conversations that would get me what I wanted, I became angry with the professor I respected and admired and who had pulled me aside to check on me when nothing was fucking wrong (I’d thought), and I’d made clear what the fuck I needed. He couldn’t have reached that part of me he knew that pulled off an adequate crouch to conceal itself behind a part of my brain (maybe shaped like the shrub) in a corner of my mind overwhelming it.
That professor’s eyes that day weren’t frightened and/or annoyed like the others. Genuine concern resided in orbs that saw me better than any of them but could not find me. He’s passed now, and I wish one of the times we’d met for breakfast I’d told him what he meant to me and how it felt being near him.
I got Russell’s autograph, just not that day. A professor friend I sometimes ate lunch with spotted me walking on campus after I’d met with a source. He was on his way to the author’s house and pulled his car over to say hi. I had stuffed the books in my messenger bag slung over my shoulder (because mania ebbs but doesn’t give up), and he agreed to take them with him after I asked appropriately and without materializing from a hiding place that had no hope of covering me. I also went to a small reading featuring Russell Banks in an eatery with paper napkins. I said something cliché and forgettable when he signed a copy of another book of his I’d purchased. I was afraid and didn’t find myself interesting from down low. I used to think I lost my voice in the cycles, or it couldn’t keep up and what fucking good was it to me several steps behind? But I also know now that my grandfather turned my volume down when he used me to get off. My uncle lowered it more when he made me blow him. My babysitter muted me when she told me I was “beautiful” and “special” and she loved me while she did ‘bad’ things to the preschool boy I was that felt good and which she said felt good to her too, creating connections I later reinforced each time I was insecure and needed to feel “beautiful” in the only ways I’d been shown.
I can’t pinpoint the frequency I tuned to the day I faux-crouched behind the shrub (which owes me a fucking apology) and accosted people I needed to maintain a professional working relationship with so I could continue to excel as a journalist. I tuned into it when I announced to colleagues in the briefing room that I had a huge dick (when I don’t), and for a long time the lie seemed a bigger offense than the announcement, because a man’s conditioning is like a barbed hook that bleeds him as he twists it out. I tuned to that frequency when I crawled out of an elementary school window after fucking a teacher (and a source) in her classroom on the floor and the desks and the chairs and the objects for learning I could bend her over and wrap her around, hiding naked in a closet when the janitor knocked to clean, and she shouted not yet. We finished as families in houses surrounding the school tucked into the middle of the city sat down to dinner and might have seen, had any of them peered out a window in the direction of the back of the school, their friendly neighborhood education reporter fall giggling out a classroom window, jump to his feet and brush his khakis off and fix his tie and look around and sing out loud “Back to work I go,” skipping ‘cross the playground, out the back gate and down the sidewalk. This is what I tuned into when I turned in gibberish and my editor suggested I see my doctor, yet in the moment I couldn’t fathom any issue she might have with the award-winning story, that, later, when I was better, looked like a toddler had pounded the keyboard while drooling and chirping and crapping his pants. I tuned out after extended and exhausting peaks, my brain no longer able to comprehend the world around me, curled into a ball on my couch, disconnected (or maybe connected with everything and overwhelmed).
I was tuned into Russell Banks that day the shrub deceived me, because if it wasn’t for that fucking shrub it would have all worked out, and yer damn right I’m driving their tomorrow and tellin’ that bitch off. “Stephen, chill the fuck out, dude. Yer in character for the piece yer writing. Ain’t gonna be no tango with a shrub. Do you even know where the fuck that shrub is today? And you might want to reflect on why you called the shrub a bitch.”
I chuckle when I think about it today. Surviving made me stronger. I love me, and all the flaws that walk with me now. If you saw us holding hands, you’d think we were family, friends, or lovers. I’ve shared this story with the few people I let into my life. I have high standards. It’s not a better-than thing, or “this person’s cooler than that one.” It’s more - I fucked up in so many ways while I was out of control and dove so deep into fixing it, it was like holding my breath for several years, and when I surfaced I needed to set high standards (while I catch my breath), because sometimes I struggle to maintain when triggered. I project that onto others and that’s not fair, because we make mistakes, and while parts of me are light and goofy and love and support, when I project I can be harsh and unforgiving and cold, which I scold myself for, because tenderness is a huge part of whom I choose to be, and that’s why, before writing this, so few people have heard this story. Until I fix more of my parts, I can’t let in people who might trigger me, not because they’re less than, but because part of being a responsible person who works and pays bills and cares for his son - who is severely disabled - and is emotionally available to his wife and children, is knowing where I am in life and setting boundaries to ensure I handle mine. Triggers remind me of the me I used to be, the me I’m afraid I could still be if I don’t hold the reins tight, the me that possibly I haven’t forgiven myself for being, and therefore lied when I whispered, “I forgive you.” How can I forgive when I hurt so deeply the ones I loved the most?
But back to this story that makes me chuckle. It’s inspired laughter in the few people I’ve told, that lough-out-loud shit that makes their parts tingle in its wake, though I suppose in their heads, as they paint smiles on faces I color my canvas with, they could be thinking, “Holy good God Jesus and all the love of Aphrodite, save me now. Just smile and laugh, and maybe this motherfucker won’t come unhinged.”
I remember when my ex-wife first hit me. A solid, close-fisted blow to the side of my head that came out of nowhere, like a misguided horseshoe at a drunken hillbilly fest, ‘cept with malicious intent. “I’m going for a quick ride with Nick, to say goodbye,” I’d said and then turned to walk down the stairs. I hadn’t seen my best friend since I joined the Army. We were gonna poke around the backroads and talk. An hour tops. Instead, her fist stopped me as my foot connected with the first step. I turned. Above me, a spiral-haired monster glared with wide eyes the color of whiskey that shook in their sockets under brows like daggers slicing sharp angles on either side of her nose, scrunched tight with nostrils flaring over lips pulled back from her grinding teeth. Her entire body tremored, and in that moment, I knew Tiana wanted to kill me. I know now that in some ways she was emotionally still a teenager. I’m grateful for her restraint that day. I may not have survived one of her more brutal assaults without this precursor to her capacity for violence.
Painting by Darby Bartlett
This lifestyle/memoir blog contains mature content, some of which could trigger some people. These posts are the author’s honest recollections to the best of his ability. He acknowledges that sometimes people remember things differently. Some names, locations and other identifiers have been changed to preserve anonymity. Author is not providing medical, legal or other professional advice, and all opinions expressed here are that of the author.