I had only been at work for 90 minutes when my mom texted.
“call when you can. Nothing wrong,” which was clearly bullshit.
She answered immediately, trying not to cry, but there was no way.
I got in my truck.
In this room
I’m sitting by your side
It rains for hours and the phone is off its hook
Standing on the edge
Casting lots to set me up
Before you knock me down off the summer’s edge
And drown me
The drive home was function and muscle memory. Every thought, every emotion shunted off to the side. I knew. I hadn’t slept more than a couple hours, hadn’t seen my parents since I landed but it was clear an unstable situation was rapidly deteriorating further and further away from what we used to call “OK.”
A day earlier my sister called; she wanted to talk about Dad. I was in Utah, and did not.
I selfishly chose to go play in the mountains while my mom and sister took care of Dad. I knew my sister didn’t want to call, she had to; there was no else to share the burden, just us and Mom. The call was only a few minutes but her tone said everything her words couldn’t. She was scared; I couldn’t handle what that meant. I cut the call short.
Driving.
Intellectually, I knew that once I was done driving, once I got out of the truck and walked up those stairs and opened the door I’d face the reality I fled – why I ran to Utah in the first place. I knew this, but couldn’t acknowledge it. Not yet. Didn’t have to. Yet. I had miles between myself and the truth that would throw everything I’ve ever known out the window. Whole miles. Tens and tens of miles.
Over the bridge.
It’s not a long island and the traffic lights are off. Why aren’t the lights on? The lights should be on.
One mile.
Half.
Blocks.
Driveway.
Stairs.
I opened the door.
Mom sat on the arm of Dad’s recliner. She was leaning into him as much as she dared, physically, which was not very much.
Their heads were touching.
Their eyes were red.
She looked up, heartbroken.
“He… Kev, he says he’s done.”
We’re betting on our own lives
Making up for all the time we lost.
My dad looked at me through tears. I knelt, took his hands, leaned into him, hugged him. I nodded. I knew, as much as I could. He’d suffered so much, for so long, in ways that I will hopefully never comprehend.
He never complained – not that he really could. He couldn’t fucking speak. I couldn’t believe he’d made it this far, even though I still kind of thought he’d live forever. But everyone has a limit. The medicine was making his already broken life even more unbearable with no appreciable result… so why bother? The charade was over, the one where he pretended to believe the medicine did anything, suffer with the smile he could make through the disease that stole his ability to smile, shouldering the burden himself, allowing us to believe, believe… anything.
Anything but the truth he carried, because he knew. He knew from the start that his diagnosis was a death sentence due in a year, thereabouts. He knew. He kept a brave face until the end, until he couldn’t, protecting us as long as he could.
I hugged him and we all cried.
My sister came down the next day so we could talk as a family. We expressed my father’s wishes to the nurse, who did her job and asked questions. If this was a case of the side effects being too much, how about we treat those side effects? Just keep taking the medicine, plus this new over the counter stuff, and the side effects will be mitigated and you’ll be back on the right track! Would you agree to that?
I watched my dad deflate. He was empty, drained, but he couldn’t just roll over and die when presented with what seemed like a perfectly viable solution, not with us in the room, desperate for anything to save us from the hard truth of our future – the one without him, one that he didn’t want to leave. With everyone eagerly awaiting his response, how could he do anything but agree? We all cried and hugged again, but I knew. Knew he wasn’t buying it, and he wasn’t happy.
In this house of cards
We’re all holding hearts and spades
(One breath, one step, could knock it all down)
But you lead with your eyes
and you give it away
(Design to cut from the clouds)
Through it all – through everything – he’d kept his sense of humor, his unshakable optimism.
Months earlier my parents met with their lawyer to discuss their will. The question of “quality of life,” came up, and when my dad would legally bequeath his life to my mom.
He typed into his phone. She raised an eyebrow.
“You want me to read that out loud?”
Dad shrugged.
Mom said, “Um, ‘When I can’t wipe my own ass.'”
There was cautious laughter. He shrugged. That was his benchmark.
It was Classic Butch. Communicated exactly what he wanted and created laughter, even in a remarkably unfunny situation. He meant what he said.
Dad’s mom died about a month before his diagnosis. In July we spread her ashes in the bay behind their old home. That evening the whole family was sitting on Aunt Patty’s porch, telling stories. Well, Dad was telling stories while my aunts and uncles fact-checked.
It was getting late, overlooking the bay where my grandparents used to own a marina and cottages, where they moved the family the day after my dad graduated high school in 1970, renting out a bunch of wooden boats that Dad and his brothers inevitably sank, and he went to college and walked onto the football team and then went to the police academy and then became chief of police in that same beach town, raised a family, built what you might call a metric fuckton of homes with his brother – and by “built” I mean built, with his hands, not general contracted, though he did do that after he retired from the police department, but he also hired himself and his brother and me and those houses still stand after Sandy, knock on wood – and hit 3 hole-in-ones and surfed and played softball and hockey and coached hockey and coached Little League and learned guitar at 35 years old to then, naturally, front an absurdly popular band that played all over south Jersey for well over a decade while in between somehow finding time to get his Captain’s License, and my dad said,
” – you know, everyone says, ‘Why me?’ I always say, ‘Why not me?”
when the people you love get lost in the shuffle
you let it go
and then you fold
I thought that since the disease was only affecting his throat that we’d continue to live normally, more or less, just without speaking – which would suck but we – “we” – would manage even though the whole thing felt pointlessly, needlessly cruel, to take the voice from a guy who loved to used his for every reason one might use ones voice – talking, camaraderie, jokes, wisdom, unintentional wisdom, singing, yelling, gibberish for his granddaughters.
But we’d still surf, we’d still golf. He could play guitar in his band, and other people could sing. Plenty of people made grabs for the mic anyway so might as well make it a thing, a celebration. We’d communicate, probably better than ever, because everything meant more, and we didn’t need to let words get in the way. This would be hardship, but it wouldn’t ruin everything that’s ever existed.
ALS took everything from my dad.
Methodically.
Deliberately.
ALS took his voice, when all he wanted was to tell a joke. He had 70 years plus several AOL chain’s worth and he told them all. He wanted to laugh. And sing. And eat things covered in mozzarella cheese. But he couldn’t eat, those muscles didn’t work anymore.
Whatever he chewed – while his jaw still worked – was a threat to slide into his lungs. He got a feeding tube. He lost so much weight.
ALS took his hands and ability to build, to create, to play guitar.
To hold his granddaughters.
To meet his grandson.
The last thing ALS took was his spark, and once that was gone… it was over.
If he could lay in his chair until the end of time, dozing in and out of sleep while we lived around him, fed him through a tube, breathed for him through a tube so he could be with us and live with us my dad would have taken all the medicine in the world, forever, if it meant never leaving us.
But that was impossible.
He couldn’t lay down without literally choking on his own saliva. He could barely breathe without asphyxiating, the suction machine permanently nearby and at the ready.
Because he could barely breathe he could barely sleep. He hadn’t slept or even properly laid down in months, hadn’t taken a full breathe in months. At best his brain must have been permanently straddling the panic line, deprived of oxygen for so long – at best. It must have felt like decades. He was desperate for peace, for respite.
But he soldiered on, with what we knew was a smile, for us.
So we stay on the open road
We drive for hours and still no end in sight at all
Driving in your car
Miss the stop sign
Fall in love
Just to get knocked down
The next day was terrible.
My dad wasn’t living; he existed. One more heartbreak; add it to the pile.
I watched him all day, broken. A passenger. My dad’s never been a passenger to anything. His eyes were open, sometimes, but for the first time they weren’t seeing, not really.
Mom and my sister went next door to my aunt and uncle’s house for dinner. I told them I’d stay with Dad, who was resting on the couch. I sat next to him and knew that this was it, I had to verbalize the thing I’d run through my head since we learned his diagnosis, the thing I was so scared to say; the thing that, as his son, I felt fell on my shoulders.
I took his hand. I didn’t know how to begin, so I just… did.
Softly, I said,
Dad, I know this is torture. I can’t imagine what you’re going through. I just want you to know I promise I won’t let you suffer.
He squeezed my hand.
Hard.
My heart stopped.
His eyes opened, and he let me know he wanted to get up, and that he wanted to go upstairs.
“Dad, are you sure that’s a good idea?”
He grunted.
Fuck.
“Dad, I don’t know if I feel comfortable getting you up the stairs alone. Mom and [Sister] will kill me.”
He pointed, emphatically.
Fuck.
I sat him up, swung his feet around to the floor keeping his torso upright, squatted, lifted him by his armpits, quickly shuffled behind and held him up while he took tiny, tiny steps towards the stairs.
This is such a fucking bad idea, I thought.
Slowly, deliberately, we made it up the two steps to the landing.
“Dad, I don’t think this is a good idea. If you fall you’ll have to to the hospital and I know you don’t want to do that so tell me what you want; I’ll get it.”
He pointed up the steps.
FUCK.
I stood behind him, taking his weight and lifting him by the pits as he pulled on the banister doing what he could to help.
My sister walked through the front door and I thought, Thank god; the voice of reason.
“What’s going on?”
“Dad wants to go upstairs.” I shook my head like a passive bystander who wasn’t physically manifesting his demands.
“Alright,” and she came over to help.
FUCK.
Together we brought Dad upstairs to his office. He pointed to his filing cabinet, had me pull papers. Boat insurance, other … stuff, certainly no reason to risk everything.
“Dad, don’t worry about this stuff. It doesn’t matter, we’ll deal with it when we have to deal with it.”
He pointed again. We brought him to the safe where he held up the numerical value on his fingers for me to put the code in. He pointed again, and I grabbed some papers.
It was his will.
Pull your punches and burn with your cigarettes
In hindsight, it’s clear. He was dotting his I’s, crossing his T’s. He knew, and his very last actions were for us, trying to make life easier, trying to carry that burden just a bit further down the road, one last time, until he couldn’t; so we wouldn’t have to.
Pulled like a punch
and
burnt like a cigarette
Forever
Dad was restless all night. He peed something like half a dozen times, which was remarkable given he hadn’t had anything to eat or drink in days. I told my family I’d take the late shift, give his medicine through the tube and stay with him until… whenever. That part was pretty open-ended, and my mom and sister had already done so much beyond their share of overnights so there I was, hands braced in his armpits, holding his weight so he could shuffle one foot forward, then the other, one heartbreaking step at a time to the toilet. I’d stand behind him, promising I wasn’t looking while he peed what looked like bourbon. He’d grunt, I’d flush, and we’d carefully turn around and shuffle back.
I got him into the hospital bed in the living room.
“Dad, I’m gonna give you the oxygen, uh, tube thing… for your nose, is that ok?”
He lifted his hand in acceptance. I slipped the tube behind his ears and brought the nostril parts into his nose. He was due for morphine, which I administered.
Dad closed his eyes, breathed calmly for the first time in forever, and never really woke up.