A July gift

July 4, 2021

Today was a hard day.

July 14 should be the day to fear. The two-year mark since Mike died is still 10 days away, but today was tough for two reasons.

One, I’m remembering this day two years ago. July 4, 2019, Mike had been bedbound for over a month. There was no question of hosting a barbeque or going outside, but we had our own party of sorts in his room. Tom had moved the TV back there from the living room and we all hung out watching movies with Mikey.

The AC was blasting and the window was darkened with a maroon bedsheet, so you could pretend it was cold and gray outside, ignore the blazing 90+ degree SoCal sun on the other side of his window.

Sheila, Tom, Ryan, Renee, Fallon, me, all crammed into the bedroom around Mike’s hospital bed. Some of us sat on the floor, some on the twin airbed. Sheila was tucked in at the foot of Mike’s bed. Offee, Ryan’s dog, was nestled among us, making the rounds of laps when he wasn’t patrolling the apartment or barking at neighbor kids skating past the front windows.

We watched Dumb & Dumber, Ace Ventura. Silly, mindless movies so we could laugh together and be with Mike and forget what was coming. He was in and out and didn’t always seem aware of all the hilarious potty humor that he always loved, but we knew that just having everyone together, around him, was what mattered to him.

We watched movies all afternoon and evening, getting up occasionally to make ourselves a snack or meal and bring it back to the room. It was a beautiful day in that darkened room, full of love.

Such a simple thing, a bunch of people bound by love and terminal illness, just hanging out. But in the face of death, you can’t imagine how meaningful and sacred it feels to “share consciousness” (as Mike used to say) in this way. He loved everyone there with a fierce love that words could never capture. Every minute counted.

That day was bittersweet. For all the love and laughter, we could see that Mike was becoming less present with each passing day. I mean, he didn’t hear the fart jokes, let alone guffaw at them the way he usually did. We didn’t need the hospice nurses to spell it out, we all felt it: these were unmistakably his last days.

But today, July 4, 2021, is also emotional because last week when I saw Sheila in Santa Maria, she loaned me Mike’s iPhone. His phone. His lifeline to the world, when he was still in this world but cut off from much of it. The first thing he would ask for after waking up in the morning, the last thing he’d set aside at night before settling down to sleep. It’s no longer connected to a network, but it contains his collection of photos, videos, and voice recordings. I was speechless, that she would trust me with such a priceless thing. It truly is.

Today I went through his recordings, and it’s flattening me. In the worst and best ways possible. Because, while Sheila and I had recorded Mike on several occasions, we had no idea that he had also been recording us.

Our “normal” days (not that any day is normal with ALS) in the apartment, mealtimes, getting him ready for bed. A tearful phone conversation with my parents, asking them to help us contact legislators about reforming ALS research. Our long drives to L.A. for his clinical trial appointments. He had been recording these moments and we had no idea. It’s the most precious gift I ever could have asked for.

Especially because in January 2020, six months after Mike passed, my phone was stolen in a freak incident, and I lost all his voice mails to me. All of them. Him calling me “Button,” singing “Happy Birthday” to me, saying, “I love you, baby.” All gone, forever. Eighteen months later I can still barely stand to think about it.

But today he (and Sheila) gave me something to make up for that indescribable loss. I am listening to these recordings and I’m reliving it all: the sounds of dinnertime, his wheelchair as he’d raise himself to reach the table, my stupid Crocs squeaking on the vinyl floor as I zip around the apartment. Him cracking his corny jokes and telling me he loves me.

Now, whenever I’m driving solo down to L.A. or the Central Coast and I try to piece together the drives we did together, I no longer have to strain to recall our conversations — now I have some of them and I can hear every word we said.

Now, with these recordings that before today I hadn’t known existed, I have a soundtrack of our actual drives to and from his clinical trial appointments at Cedars-Sinai — I can hear it not just in my head, but how it really happened, play by play. We talk about the trial, how much we hate L.A., the physiology of his illness, death and the meaning of life. It’s so real.

There’s a recording of the three of us — Mike, Sheila, and me — in the car, on our way to the VA I think, or picking up the van from San Bernardino, and Mike’s talking about boogers. Seriously. He loved to talk about boogers (partly, no doubt, because it really grossed me out).

Then there’s one from a night in early June 2019, when Cynthia, our home health angel, came for an overnight so Sheila and I could sleep. He told this story of when he first enlisted in the Navy, when he reported for boot camp. Absolutely hilarious.

On those nights when Cynthia could be with us, Mike was so happy because he loved her so much and it meant he could stay up talking to her all night, since she was working. Toward the end, he really disliked bedtime, because he didn’t want to sleep — he was afraid he wouldn’t wake up, first off. But it was also that he didn’t want to “lose” one bit of what time he had left. He didn’t want to waste time sleeping when he could share consciousness with us.

As I would drift off to sleep in the other room, I’d hear Mike and Cynthia whispering and giggling. “Shhhh, Mike!” [stifled laughter] “You’ll get us in trouble!” And though I couldn’t hear what they were talking about, he would tell me the next morning that they had swapped stories of their lives. The funny and the serious ones. For hours and hours. When his energy would flag in the wee hours, he’d still refuse to sleep, and Cynthia would go to the kitchen to quietly prepare a snack or nutrition shake for him and tiptoe back to the room.

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Two years. If you’ve never grieved the loss of someone close to you, you might think that after six months or a year it feels better, that you move on.

In some ways I think it hurts even more two years later. I keep busy and I no longer cry every day, but when I have a day alone at home, it’s like I’m making up for all those weeks that I didn’t let myself feel the intense pain because I was busy working and seeing people. It’s always there, always. But I also feel that, because the pain is there, he is there. His face is clear, his voice is real. Call me dysfunctional, but I really prefer this to “feeling better” and “moving on.”

There’s something about listening to his voice that makes him so very real. It’s like he’s still here, maybe just on an extended trip, that any minute I’ll get a call from him, pick up and hear, “Hi baby, I’m back!”

Today, almost two years later, I just couldn’t stand it, him being gone. I never left my apartment on this July 4. But this painful reliving also keeps him close. Sheila and I both agree: we’d rather feel this pain and still feel him than to “get over it” and move on. Whatever that even means.

Here’s a video from Mike’s phone that he recorded on a rainy day in January 2018. I’m not completely sure where it is, but it could be in the public rose garden near his old apartment in Oakland. The Morcom Rose Garden is beautiful, bursting with blooms this time of year, and there’s a small redwood grove on the hill overlooking the roses. Wild turkeys sometimes roam through the garden. I think this is it.