"He thinks it's the greatest day because he, like, stole an ice cream truck."

"Yeah, that's cool. If I stole one of those, I'd, like, go out to the desert and I'd just, like, start eating all the rocket pops and the
chocolate chippity crunches and--and the dreamcicles, yeah, and the nutty buddies!"

"Shut up, Beavis."

Today Is The Greatest Day I've Ever Known

Today marks one year to the day since my own Greatest Day. I sat in a chair for time untold, utterly paralyzed, and watched my mind looping on itself, stuck in patterns. I watched it happen, but that part of me that could still watch objectively couldn't break me out of it, and the pain was literally almost unbearable.

I began to consider various plans of leaving. If I got far enough away, would things be better? I saw myself on the other side of the mountains, in the desert, at the edge of a canyon. Surely in a place like that, I imagined, I could find one way or another to bring the pain to an end.

Can't Live For Tomorrow, Tomorrow's Much Too Long

Somehow I got myself into the bathtub, and I lay unmoving in the hot water, and I watched my mind and I watched my breath and there I discovered that no single moment couldn't be breathed through, so long as I could keep my attention close enough. Every time my attention stretched into imagining day after day of this feeling, despair would rise up again.

But attention has a way of wavering, and so I let myself look forward to the end of the day. Can I breathe through it? Yes, I found. I can breathe until I go to sleep tonight. So I built a wall at the end of the current day and would not let myself look over. If I kept breathing, I discovered, I could make it through today.

In the song he says, "Can't live for tomorrow, tomorrow's much too long."

I don't know that that realization would have been enough. Looking ahead, seeing pain of this magnitude, I finally truly understood why someone would choose to end it all. I understood what "unbearable" really means.

Part of the pain was the anticipation of pain. But how long would my resolve have lasted in the face of day after day of it? How long could I go with building walls at the end of days?

I Wanted More Than Life Could Ever Grant Me

Later, I was at a concert. I'd gone to hear a classical pianist perform an all-Rachmaninoff program. In the program notes, I read a story I had once known but had forgotten: his First Symphony was brutally panned at its premiere, and afterwards Rachmaninoff had fallen into a deep depression. It took several years and the help of what we'd now call a therapist to get him to compose again.

There is a way, sometimes, that in times of crisis the world gives us exactly what we need. I do not know if the answers are always there and that we merely need to look hard enough to see them, or if it's that in times of desperation there is some providential force that watches out for us gives us exactly what we need. Perhaps these are one and the same. No matter. I saw in Rachmaninoff's story my exact situation. Rachmaninoff had poured everything, literally everything, into the creation of his symphony, and when it failed he had nothing left over to right himself. I too had poured everything into things outside of me, and when they hadn't worked I had had nothing left.

Would that have perhaps been enough, just knowing, seeing how I got there? Perhaps. But providence had more for me.

My Angel Wings Are Bruised and Restrained

An EDM artist I wanted to see was performing in town later that night. The show was sold out. A friend of mine worked at the venue, and had told me that if I ever wanted to see a show there, to hit him up, and he'd put me on the list. I had contacted him the day before but never heard back. I decided to go anyway.

I found a parking space right near the venue--probably just dumb luck. always a nice occurrence on a busy Friday night. I remember that as I walked from the car to the venue, I said aloud: "I could really use a little help right now."

SOLD OUT said the signs on the venue doors. No one lingered outside looking to sell a ticket. I went up to the box office and said to the girl inside, "I might be on the list." She asked me my name and the name I'd be under. She scanned the page. "I'm sorry, you're not on here," she said. And then she looked up at me and said, "If you're really a friend of Mikey--he's a really great guy." And she slid a ticket across the counter to me.

I wonder, sometimes, if she felt she was just doing a nice thing for someone, or if on some level she knew that here there was more at stake, that before her was a person who right then really needed a little help.

My gratitude to her will ever endure.

And then things began, really, to flow. I was no sooner in the venue than I ran into three people that I'd just met the week before. We recognized each other and I asked if they'd mind if I spent the evening with them. So all of the sudden I wasn't just seeing the show, I had people to share the evening with. And the music was wonderful, and the crowd was delighted, and my energy began to flow again, and I knew, really knew, that I'd be okay, more than okay, that indeed in some way I'd be okay forever after, because that's what a Greatest Day is.

Nov 8, 2013: The Greatest Day I've ever known.

In our family, we don't sing "Happy Birthday." We sing the Birferness Song. It goes like this:

Birferness on you,
Birferness on you,
Birferness dear Papa,
Birferness on you!

A year ago today I called him and sang that to him for the last time.

I love you, Papa. Happy birferness. I sure do miss you.

That trip home was hard. I wrote in my journal, "It's pretty fucking heavy here right now. He's definitely dying. How much longer he has I have no idea but it's coming to an end." But that isn't to say there weren't good moments.

I was to fly out of Albuquerque on the afternoon of May 7th. Along with all the other changes we were facing, a major one was that Mayra, who had been for many years my dad's caregiver and assistant and friend (actually, it'd be more accurate to call her his adoptive daughter), was moving to Silver City to be with her husband. She had stayed and helped out at the nursing home, but it was time for her to move on with her life.

My mom contracted with a company that provided caregivers for in-home care. Just before I was to leave for the airport, one of them came to interview. Her name, if I remember correctly, was Taimi. Taimi was Nigerian, about 40 years old, and very striking. My dad's face lit up when he met her. He said to her, "Are all women from Nigeria so beautiful?" She laughed, delighted. When she and my mom went into the other room to continue talking, I looked at him and raised an eyebrow.

"I'm not dead yet," he replied.

It was on Cinco de Mayo a year ago that the idea of spending the summer in Albuquerque arose in my mind. I had a basically open summer ahead of me--no trips planned, no major events.

I remember worrying that it might be something like self-indulgent. Because the trajectory of his illness had tended to be long plateaus in between bouts of decline, I wasn't certain that he wasn't going to be around for a while yet. Would I feel foolish/self-indulgent/was I making too big a deal out of things if I spent the summer in Albuquerque and he lived for another two years?

I remember struggling with the uncertainty. What if he lived for another two years? Would I be making a mistake of some sort if I spent the summer in Albuquerque and he lived for another year or two? Would it be self-indulgent in some way, as though by taking that time I would be requesting something of the world to which I wasn't entitled? I happened to be fortunate enough that I could make it happen; a lot of other people, facing a similar situation, wouldn't be able to do the same. Was I taking too much advantage? Was that somehow unfair of me? As though the gifts the universe offers you are somehow not for us to accept, as though we're supposed to martyr ourselves in the face of our own good fortune. It's silly to remember that worry in retrospect. But I do remember it.

And I remember making this assessment: if I spent the summer with him and he lived another year or two, I'd never regret the time I spent with him. On the other hand, if it was to be his last summer and I didn't spend the time available to me with him, I'd regret it forever. That sealed the issue for me.

I spent that evening hanging out with Coit and told him the idea. At holidays for the past few years I'd stayed with him, my parents' house being a challenge to stay in for multiple days. I asked him if I could stay with him that summer. My dad and Coit were best friends; he didn't hesitate for a moment.

I didn't make up my mind for sure that night. There was a lot to think about. But by that night things were definitely set in motion.

Exactly one year ago today, on March 31, 2013, my dad announced that he was ready to begin the process of dying.

It was Easter Sunday, and we'd all come home. I'd flown in a couple of days before. My older sister and niece and great-nephew had come in from Portland. Coit was there. I suppose you could call him a dear family friend but he's really family.

My dad was finally getting over the symptoms of a virus that he'd contracted earlier in the month, a nasty cold/flu that had sapped what little strength he had. (Colds are deeply concerning for late-stage ALS patients. With such weakened muscular strength and control, it's very hard to clear out mucus by coughing or blowing one's nose. Pneumonia is a real concern and a frequent cause of death.) On March 17th, he'd gone to the emergency room complaining of pain in his chest. After a long wait and many anxious phone calls between my sister and me, the doctors came with a diagnosis of shingles, an insult-to-injury opportunistic secondary (or more accurately, tertiary) illness that demonstrated how deeply diminished his vitality really was.

I talked to my mom later that evening, after they got back from the hospital. She was understandably exhausted. I remember looking at my calendar and telling her that I was in a really busy stretch and didn't think I'd be able to get home until early May. I could feel her deflate a little over the phone. Something was different this time. It was with a feeling of something overlooked that I noticed that Easter was early that year, two weeks away, and that I had that weekend free. On March 18th I booked my flight.

"A la famiglia," my sister doubtless toasted at Easter dinner. She and my dad had watched "Moonstruck" together about 6,000 times over the years since her first marriage had imploded, and she and he had been leading us in that toast ever since, the movie's story becoming part of our story, the toast becoming our toast as well. We become that which delights us.

He'd been talking about going into a nursing home for some time, but now he was unyielding. He insisted that he now needed 24/7 care and couldn't get it at home. We disagreed. Hadn't we (and by "we" I mean "mostly my mom") figured out a way to handle his care all these years? Surely we could solve this problem too.

He was adamant, angry. "It's killing your Mama," he yelled. We thought he'd hate it. We certainly knew we hated it. He'd been saying for a few months that he felt a decline in his mental faculties, but we couldn't see any reason to refuse him the right to make his own decisions. We acquiesced.

I remember he was so tired. I remember thinking his fatigue was the result of the virus, and hoping that he'd get some rest and see some of his strength return.

But I was wrong. For me and the rest of us, used to dealing with his ALS as a not-insurmountable challenge--which is exactly how you have to think of a living with a relative's long-term illness--the nursing home became a logistical question. When would this happen? What do we need to do before it does? But for him, the physical act of moving out of the house was a statement. By removing himself from his home, he was preparing to remove himself from the greater situation. The fatigue from the recent illness went deeper than just its physical toll. He was done fighting. 21 years had passed since his initial diagnosis of ALS, and the fight that had carried him so far beyond the grim initial prognosis (five years, the doctors had told him) had run out. It was time to rest now.

This is all obvious only in retrospect. For us, accustomed to dealing with the issues his illness raised as just part of life--his and ours--it fit the pattern to see this change as just one more thing and wonder where it would lead. He was clearly weaker than ever before, but the general trajectory of his illness had been a decline and then a plateau, a decline and then a plateau. It was easy to assume that pattern would repeat yet again. But this time was different. He had made the decision that it was time to die. Of course he didn't say that. He said instead that he wanted to go into a nursing home, and did. And all the familiar patterns left with him and never, ever returned.