Today, February 19, 2023, Mike would have turned 52, and I don’t know what to feel.
Five years ago, I didn’t know what to feel then either. I’m pretty sure Mike would have said the same, times 10,000.
As his 47th birthday approached in 2018, we were living the early days of a nightmare. It was a few weeks after his initial diagnosis, the one we tried not to believe or accept. But the reality was looming and we couldn’t outrun it for long.
Something about that time, those first weeks. “Acute” is an inadequate word, but something like that. An untouched drawer at my apartment holds artifacts of that period that I still can’t face. Like the electric muscle stimulation machine that he bought off Craigslist, thinking it might help him regain muscle function, or at least not lose any more. He had already lost the use of his upper arms. Things were moving fast.
I had only learned of Mike’s diagnosis a couple weeks earlier when he’d called me to break the news. February 3 became one of those demarcation lines for me, dividing every single memory and life event into either The Before or The After.
Suddenly thrown into the spiral of The After, I felt untethered, not trusting the ground beneath my feet. Nothing mattered anymore, yet somehow everything mattered. Mike came to live with me, and we grew close again in an instant, like no time had passed since we’d been together years before. It was so beautiful even as the nightmare tightened its grip.
A distraction
Just before Mike’s birthday that year, my youngest brother came to visit from Michigan for a long-planned trip to go to a concert with me and hang out with my sister Tina and her kids. Mike and I weren’t sure how it was going to go, but we decided to do our best to enjoy the visit and “be normal” as much as possible.
Mike had already been a part of my family since the earlier years. He’d met my parents and five of my six siblings. Everyone loved him, loved hanging out with him. Tina’s kids had always called him Uncle Mike, even long after we’d broken up eight years before. Having Steve here would be a welcome distraction.
It was such a nice visit. It was surreal. We told Steve what was going on, but we tried not to dwell on it. Mike insisted on driving Steve and me to BART for the concert in San Francisco, and he picked us up afterward, late at night.
The weather on Mike’s birthday was cold and chaotic. Rain poured down in sudden squalls followed by brilliant sunshine. Dramatic storm clouds towered into the stratosphere. The wind was all over the place, unpredictable. Just like how we felt inside.
We drove up into the Berkeley hills to show Steve the view. Mike had mastered driving despite his sudden disability mainly by relying on his still-strong forearms and hands while using his whole body as leverage. It made him feel good to drive us around, show Steve the sights, and that made me feel good. The combined energy of the three of us together was just medicine.
Mike knew every inch of Berkeley and the UC campus. Though his years at Cal were difficult as he recovered from his divorce and his injuries from the accident, they were also some of the best of his life.
The parking lot at the Lawrence Hall of Science, near Grizzly Peak, had been our go-to when we had first met back in 2008. Today, the heavy dark storm clouds hovered over the bay. Beyond that, the afternoon sun lit up San Francisco, the bridges, and the water.
As Steve and I admired the view, Mike propped his phone up on the windshield and snapped a pic of us, but I didn’t know that until later.
Always the goofball, Mike pretended to be a dangerous (yet laughing) mountain lion next to a sign warning of big cats in the area.
Soon burritos were calling our names, so we headed down the hill to hit up Gordo taqueria on College Avenue. Mike’s Ford Focus snaked down the wet ribbon of pavement as the rain started back up, but this time it was chunky. Solid. Not hard like hail, kind of gloppy and slushy.
This was normal weather back in Michigan where I grew up, but it was weird to see it in Northern California. Not only that, now it was accumulating — the ground was white. WTF?
Mike parked in a small lot near Gordo, and by the time we got out, the windshield and car were covered. The streets were blanketed in white here on the Berkeley-Oakland border. It all meshed with the surreal feeling of the day and my feelings of disassociation. At the same time, it kind of made me feel more… alive, somehow? Being there with Mike and Steve, sharing this wild moment during a crazy time.
By the time we finished our burritos, the “snow” was melting. We headed home and got into our jammies as the crazy weather started winding down outside.
“I want to show you guys something,” Mike said. “Have you seen this before?”
He pulled up a YouTube video of a choir performing “Africa” by Toto using their hands and bodies to simulate the sound of a storm. It’s gorgeous and mesmerizing. I’ve never forgotten it, but I hadn’t watched it since that night, until just now.
Soon we were down the YouTube rabbit hole.
Next came a short BBC documentary about the 1970s song by 10cc, “I’m Not In Love.” It was groundbreaking in that the band used a continuous loop of human voices as the main instrument. “A tsunami of voices,” 624 to be exact (three of the band’s four members’ voices multiplied on tape loops using a 16-track machine).
Mike had shown it to me years earlier, but the story was new to Steve, a huge music nerd and talented musician himself. He was fascinated.
Why do I remember so clearly the exact videos Mike showed us that night five years ago? My memory is not the most reliable thing in the world.
I think it’s because of the way those weeks, that month, made life feel like a gigantic relief map, everything sharp and dramatic and etched deep into brain and heart and gut.
That and the fact that it was his birthday in the middle of it all, an intense day during an intense time. We didn’t know what was ahead, and we didn’t speculate. It was unthinkable to consider the future. We were just trying to navigate this shit and be normal just for the moment. Trying to enjoy each other and the people we loved and go on living somehow.
Mike always made my brother, my family, me, everyone feel special and alive. He loved to make people laugh and it made him happy to share beautiful music, movies, and stories with those he loved.
That’s part of the reason it was so hard to believe and accept this diagnosis: He had always just been so alive. He was fierce. He had survived so much in his life, I used to think he had nine lives, that he was indestructible.
In the weeks after his birthday, Mike’s ALS diagnosis was confirmed two, three more times by neurologists at the VA and Cedars-Sinai. One early March day at work, I came across the famous Dylan Thomas poem that seemed to capture the prevailing winds of the time. I didn’t tell Mike. I wasn’t ready to use the word “dying.”
I later learned Mike knew the poem and had kept it close during the same time.
“Rage, rage against the dying of the light. … / Though wise men at their end know dark is right … / Do not go gentle into that good night.”
Dylan Thomas, “Do Not Go Gentle Into That Good Night”
The day after we had driven into the hills and eaten burritos in a freak snowstorm, Mike sent me this text with the picture he had secretly taken of Steve and me.
“Thank you for saving my birthday.”
The thing is, he saved me that day.
