Introduction: The End

“Whatever happens. Whatever
what is is is what
I want. Only that. But that.”
– Kinnell, Galway. “Prayer.” A New Selected Poems, Ecco Press, 2001.

It all started with a twitch. 

A twitch in my right calf like a fluttering bird trapped under my skin was the first sign of the disease  that would steal the use of my limbs and force me to write these words you are reading only using my still functioning eyes.

For twenty-five years, I’d raced against time. 4:00AM wake up in a dark house in Pennsylvania. 5 AM train to New York City. Predawn runs in Central Park. Coding marathons, endless meetings, hiring and firing, boardrooms, barrooms. Home by 7:30. Superdad  hours – kids already half-asleep. Bourbon to find sleep. Rinse. Repeat.

Life unfolded in staccato bursts. Married at 29. House. First daughter at 32. Laughs and tears and many hugs. Second daughter at 34, born dangerously premature. Six months in the hospital, often at the edge of life.  Then, home with feeding tubes, heartbeat monitor, and morphine withdrawal.  Birthdays and Christmases. Developmental delay and autism diagnosis. Depression, arguments, heartbreak, and family vacations. 

Met someone who reminded me how to laugh. Divorce. Remarriage. Dogs and cats. Infertility. Adoption of my son. More birthdays and Christmases.  Her lighting swings between depression and rage.  Failed attempts at marriage counseling.  The laughing left. Rages moved in. I moved into the guest room. I held on for the sake of my adored little boy.  Deep loneliness was a better alternative than the disruption and embarrassment of a second divorce.

From programmer to CTO, I climbed.   Money flowed.  New York City.  London. Tokyo. Hong Kong. Manilla. Bored with finance, I joined a startup. Losing faith in that, a new friend and I planned one of our own.

I told myself it was for them – my effervescent son, my hard-won youngest daughter who’d need lifelong support, my firstborn ray of sunshine, my increasingly unstable and aggressive new wife. But, truth has a way of cutting through pretense.  From my time as a commercial fisherman in the Gulf of Alaska, to hedge fund CTO in Central Park South, to startup founder in Soho, I was more driven by personal achievement, restless ambition, joyless competition, and angry impatience than I would admit to myself.

So, as things became worse in the marriage, my work became escape, pure and selfish. I ran towards accomplishment, away from the indifference or the hissing rage that coiled behind my wife’s frequently closed bedroom door. I have great compassion for her suffering with mental illness, but its fallout, compounded by my ineptness in dealing with it, was battering me, hollowing me out, leaving me parched for connection.

Unravel 

Into this, a new person arrived like dawn after a long night—a doctor with gentle hands and knowing eyes. She brought soup when I was sick, held my hand as we walked, and kissed my forehead like a blessing. I was finally home.

Sensing it, too, she prepared a house for us, high on a wooded hill on the North Shore of Long Island, overlooking the sea. It had bright rooms for the children, a library with a fireplace for me, and a kitchen table where we would eat meals of roasted chicken, mashed potatoes, and peas.

Another divorce loomed. But this time, I thought everyone would understand. This time, it would be worth the fall.

Then, COVID hit. The world contracted to the size of our house—a pressure cooker of resentment and unspoken words. Under the stress, my body betrayed me further. I noticed my chest and arm muscles were animated as if by some invisible electric current, contracting and relaxing under my skin like lighting illuminates portions of an overcast nighttime summer sky. One morning, my oldest daughter pointed out that I was walking with a limp. 

When the world opened again with relaxed travel restrictions, I seized my chance. I had open air business meetings in the Hamptons, stolen days in the house by the sea, my son splashing in the Sound, and my new love watching over him. It was a fragile equilibrium.

Knowing what was coming, I thought it would be less frightening for my children  if I could dispel fear of what the future would hold by giving them a glimpse of it.  So, one August night, with all three children gathered around a firepit’s glow at the house on the hill near the sea, my gentle doctor and I sat close and, without thought, our hands intertwined.

 A moment of perfection, earnest hope — and regret. 

My observant son, the inadvertent messenger of my betrayal. I’ve woken a thousand times since wishing it happened differently and less hurtfully.  But, it could not be undone and the only thing to do now was to move forward.

What followed was a blur of asphalt and heartache. Pennsylvania to Long Island, 2.5 hours of meditation set to the hum of tires. Juggling two homes, two lives, trying to cushion the impact of a shattered marriage. It would be difficult, but I believed that with time and perseverance, everyone would emerge stronger if I could just endure this final challenge.

Summer’s warmth faded into autumn’s chill, and with it, my fragile balancing act began to falter.

Shatter 

The cascade of medical interventions began innocuously – a furrowed brow, a referral. Then came the barrage: MRIs, needle biopsies, nerve studies,  spinal taps. Each test more invasive, more foreboding than the last. The grim procession of months  led to three letters that rewrote my future: ALS.

A death sentence. A creeping total paralysis that left all sensation, every maddening itch, intact until it suffocated you under a chest that you no longer have the strength to lift.  No treatment. 24-36 months average survival. I sought second opinions, third opinions –  grasping at straws.

The future I’d so carefully constructed – the seaside home, the promising startup, the new love, all of it hung, suspended in midair, for a heartbeat – before shattering. My story would end mid-sentence, a thousand threads left dangling.

A timer began its merciless countdown, ticking away moments I’d foolishly thought guaranteed. No golden years with my new love. No retirement boat with my son. No bedtime stories for grandchildren yet unborn. Just a relentless series of losses, my mind intact but imprisoned in an ever-tightening cage of flesh and bone, until the day I became too weak to draw breath.

I held this knowledge close, a coal burning in my chest. Let my children, my business partner, and the employees of our rapidly growing young business cling to their illusions a while longer, I thought. Let the world spin on, unaware of the chasm yawning beneath my feet. Only my soon-to-be wife and soon-to-be ex-wife bore the full weight of this truth.

Faced with the cruel arithmetic of my remaining days, I made the most agonizing choice: with no future to offer, and only enough time to tend to old wounds, I returned to the guest room of my old life. As wrenching as it would be, I believed the best use of my dwindling time was to work towards some measure of understanding with the person I had so dramatically estranged, and to be a present father for my children, especially my young son.

With that decision, the dream of growing old together in our beautiful seaside home shattered like a light bulb. A startling pop, instant darkness, beauty and hope raining down in razor-sharp shards. My kind doctor understood as much as she could, but the loss cut deep, a wound that refuses to heal.

Dark

I intended to spend my remaining days with my children and mend what could be mended. I hoped to find some measure of peace– to set the stage for a gentle fading. Instead, I reignited a fury. Her rage crashed against me, a relentless tide, day and night.

I apologized. I explained. I pleaded with her to make the best of the short time left, for the children’s sake, to not let me go into death with permanently unresolvable enmity between us.

Still, in the dark of my guest room, I would fall asleep trying to calm my twitching body, only to wake to wild eyes flashing in the pre-dawn gloom. She would scream at me, waking the our young son at 3:30 AM in her rage.  In the darkness, she would scream that I was not only hated, but deserved to be hated. My illness was her justice, my suffering a deserved sentence.

She unleashed torrents of hatred, driving me – already suffering in body – under the dark waters of unrelenting conflict.  I had earned her anger by leaving her and resolved to endure my penance. After all, I assumed my remaining time was so short that there was no choice but to be buffeted by the waves of her rage until they passed, or until my breath literally ran out.

Then, to my surprise, my condition progressed more slowly than expected.

Spring softened into summer. I did my best to conceal my growing limp, my waning strength. Her anger, while unabated, flowed less frequently. A week might pass in tense quiet before; without warning, fury would rain down, and the dark floodwaters of hate would rise again.

My right foot had begun to drag, causing frequent falls. The single step into the house would often leave me sprawled on the garage floor. Two flights of stairs to the bedroom frequently required crawling to bed on hands and knees. Even the sunken living room’s short steps to the bathroom regularly threatened to expose the secret I was still trying to keep.

In the quiet times, I carved out moments of normalcy for the kids: holidays, beach trips, fishing expeditions, visits to grandparents. All the while, I silently urged myself to savor these last tastes of life. But upon each return, the house was always lit by a black sun, never knowing what might trigger the next outburst.

I could feel the stress taking its toll, my condition worsening with each new rage.  I warned her repeatedly: I could not continue living with her aggression. I had grown too weak, and her hatred had only intensified.

This wasn’t going to work.  There would be no dying solace in that place. I had to leave.