A Nod to Grief

Last week, in discussing my work, I remarked that none of us are served by holding back our gifts. "Let your light shine," I said.

That brought something up for me. My dad used to say about me that I "hid my light under a bushel." I don't think he'd say that anymore. I think he'd enjoy watching me continue to expand into who I am. I wish he were here to see it.

The Greatest Day I’ve Ever Known

"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.

The Birferness Song

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.

“I’m not dead yet.”

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.

Happy Cinco de Mayo

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.

On the First Anniversary of Their Last Anniversary

My mom used the time while my dad was in the nursing home to get his room ready for his return, to be prepared for the newer challenges. She got a new hospital bed for him and a Hoyer lift--the days of being able to transfer him from his wheelchair to the bed or vice versa with just a transfer board were well past. She moved some furniture that had been in his room out to make space for a couple of pieces that held necessary supplies.

He came back home on Apr. 25th. Five days later, they had their 43rd wedding anniversary.

What can I say about this time? I remember getting updates here and there. For me it was a quiet but preoccupied time.

The day after he came home, I booked a trip home, flying in on the 3rd and back to to Boulder on the 7th. I never saw him in the nursing home and I can't say I regret too terribly not seeing him there.

What Happened Next

We must have met with the representative from the nursing home on Monday afternoon, the first of April, because I was there for it, and I know I left Albuquerque Tuesday morning. It took me a while to dredge up these memories: that they'd been talking about a nursing home for some time, and had chosen a home near their house in Albuquerque. I remember now that there was some talk of him going to a home in Truth or Consequences, about one-hundred-fifty miles away from Albuquerque, that was run by the VA and specialized in ALS care. My mom nixed that idea, and so they chose a place nearby.

As best I recall, the representative was a nice woman, and the place looked nice enough in the brochures. As for handling the not-inconsiderable cost, at some point during the course of my dad's illness, the VA had declared ALS a service-related condition (he served during the Korean War) and given him full VA benefits, one of which was an allowance toward nursing home care. (When he got full VA benefits, he called the VA's declaration, with genuine gratitude and no obvious irony, "like winning the lottery.")

I flew from Albuquerque directly to Seattle, where I spent the next six days under oppressive Pacific Northwest gloom. I spent the first couple of days with a friend who was dealing with his dad's terminal cancer, though I mostly remember us adroitly not talking about what was going on with our families. On Thursday, went to stay with another friend whose 30th birthday had brought me and a number of our mutual friends out to celebrate with him. It was his time, as well it should be, and I think it's fair to say I was a bit of an asshole during those days. I wasn't about to burden him with everything that was on my mind during his celebration, but as a card-carrying introvert, my first step in processing is to take some time alone. Even under normal circumstances, not having that time alone after a difficult stretch points me directly toward an unpleasant mood. Throw in the dank Seattle weather (as a child of the desert, my mood in springtime varies so directly with the weather that you could legitimately hypothesize that I'm photosynthetic) and let's just say I was not in the healthiest mindspace.

Furthermore, events kept moving forward in Albuquerque. I got some updates via text.

From: Parents
Your dad will be admitted to Montebello on Friday morning. He felt we
had to move as quickly as possible because of his increasing
weakness. More later. Love
Wed, Apr 3 5:35PM

Friday rolled around soon enough:

From: Coit
In case you have not heard your dad is in the home. Nice place. And
the staff seemed upbeat and qualified. It overwhelming to see
him like this. I can see why your mother is so stressed out.
Fri, Apr 5 11:09AM

I must have texted back that I hoped it would prove to be a good choice, because Coit replied,

From: Coit
I hope so too for both of them. The next few days will be a
rollarcoaster ride for both of them. They have been together a
long time. Going home with jay not there will be difficult on
Karen. And for jay to be without Karen and his familiar
environment will be hard.
Fri, Apr 5 12:04PM

I asked my younger sister how she was doing:

From: Abigail
Exhausted. Exhausted. Sad. He is settled in and it was awful. I cried
for about 3 hours
Fri, Apr 5 1:11PM

That afternoon I went with my friends to Gas Works Park on Seattle's Lake Union. I separated myself from the group and called my sister. We spoke for a long time. It was really hard.

And by the next day, he was already hating it there and asking to come home.

Uncle Mike

My uncle Mike, my dad's brother, died earlier today. He was 90. My mom got the news from my Aunt Suzanne, the youngest of the four Lanin siblings and now the only one alive. Over the past ten months, Aunt Suzanne has now seen all three of her siblings and her husband die. I cannot but try to imagine what she's feeling. In addition to her grief, which is surely beyond my comprehension, I imagine she feels a great deal of loneliness, and a particular fear, too--how would you not find yourself thinking, "When is my turn?"

And what do I think and what do I feel? I tried to puzzle it out this morning. I was and am not particularly close with my dad's side of the family. I went to college in CT, where a substantial part of that side of the family lives/lived, and saw none of them more than twice, I don't think. I visited my Aunt Suzanne and Uncle Saul a couple of times in college and not at all during my six-year stint there before I moved to Colorado. Just before we moved, we found that my cousin Chrissie, Mike's daughter, lived literally up the road from us. She and I visited once or twice before I moved away. I hadn't seen Betty Ann since I was a kid, when a couple of summers we went to Atlantic City to visit. And both during college and during my later stint, I would meet with Mike from time to time when I went down to New York.

And yet I do feel a connection with my dad's family. I don't know if this connection is an act of imagination--a wholesale creation--or something real. (Does it matter? Is there even a difference?) So I am thinking and feeling today about what it means to lose someone to whom I wasn't close. Because I recall the times that Mike and I did spend together--visiting him in his office, the time Debby and I came down to New York to hear Yvonne do a cabaret performance, the visit to Mike when he was in the hospital--this last was just before we left for Colorado, and I was pretty sure it'd be the last time I saw him. But I went back to the east coast in the summer of 2009 and he and I had lunch together at restaurant near his and Yvonne's apartment. I remember as I left watching him cross the street in bright sunshine, an old man in New York, and wondering if I'd see him again.

There's a way that the past exist in your elders. Am I the only one who feels this? I know the Buddhists say that only the present exists but … it's like we all live as a timeline of ourselves, so that we are not a point but a length. I imagine us as these black lines against a white background. The lines stretch in both directions from the present, toward past and future. As they extend further from the present toward times distant, they fade, blur, lose intensity. And I see the lines of those around me. The closer a person is to me, the more solidly I see their line. As that person's distance from me increases, be that distance temporal or emotional, the blurrier their line becomes. And so the full imagining of myself in time is not a point nor even my own line but as kind of a cloud, which becomes fainter as the edges are approached and then fades away. At a death, one of the lines that makes up a part of the cloud ceases to be.

My recollection of that last time I saw Mike must be partly faulty, because when I first brought up the memory, I saw him crossing Sutton Pl. from West to East. But that doesn't make sense if he was returning home--their apartment is on the west side of the street.

There is something interesting about the faultiness of memory, isn't there? We can know something happened and feel something about the way it happened--isn't that kind of what memory is--and yet when I first brought up the image I must have had it wrong. Perhaps I was conflating when we crossed Sutton Pl. together to go to the little pocket park he took me to. It was July in New York City and sunny and hot. The connection between Mike and me, manifest in the events of that day and my recollections of them, was already blurring off toward the edges of the cloud. Today it is a little blurrier. I miss him.

Exactly One Year Ago Today

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.