The anniversary of Steve’s death is Monday, April 24th (11:05AM if you’re interested in marking it). I’m probably going to be unreachable except to a select few people. I’m not fragile, exactly, but I am vulnerable, or perhaps raw is more understandable. And I really have no idea what to expect. At all. It’s just another circuit around the sun with him being gone. And it’s also a trigger point for a stream of memories I sometimes wish weren’t seared into my brain.
Anne Lamott pushed out an essay on death this past January. I reread it every couple of weeks or so as my awareness allows me to absorb and understand something that previous readings blocked.
“But won’t death be scary? Ann Brevner’s wasn’t. Just weird. Her death, like every passing I have witnessed, was beautiful, gentle, sometimes hard and confusing, and completely doable. At some point, for almost everyone, it is like being in labor. Especially if, like me, dilated 7 centimeters after 24 hours of labor, you realized you didn’t like children. But in both cases, birth and death, something beautiful is coming. Ram Dass said death would be like FINALLY getting to take off the too-small shoes we had been wearing our entire lives. Think of that. Getting to rub those sore arches and wiggle those baby toes, after all these year feeling cramped, like foot bound women, tiptoeing to minimize the pain.”
Now not every death is beautiful. Anne has been lucky thus far on that score. I’ve met women online and in person who hated their husbands when they died, for a variety of perfectly understandable reasons, and that vigor of emotion pushed itself into the death and made it an eruption. Other deaths were gruesome accidents, occurring in remote places where prolonged suffering would have been easy to imagine. And I’m no longer stunned when I meet a young widow who tells me her husband died of suicide or a drug overdose. It’s more common than I ever knew, and it leaves behind it a wake of anger that keeps reasserting itself with each wave of grief these young women endure.
I got lucky. Supremely lucky. Steve was still able to think and make decisions when he was diagnosed, and we had time to tie up loose ends and get our paperwork in order. Thanks to his daily intake of aspirin, his brain biopsy was delayed two weeks. At the time it was infuriating to have to wait to get a proper pathology on what was eating his brain. But we didn’t know then that the biopsy and the subsequent ventriculostomy would weaken his right side and deeply advance his aphasia. Cutting into a brain is indescribably tricky, and never without consequences. Still, we got lucky. Those two weeks before his surgery weren’t perfect then, but they are now in hindsight.
The major hiccup of a double pulmonary embolism a month after his surgeries was a nightmare of pain and fear. I kept thinking the entire bumpy ambulance ride that this was not how I wanted him to die, strapped tightly to a gurney and bouncing around the potholed streets of Los Angeles. I wanted to strangle the entire department of public works that night for each wince and groan that came out of Steve. But again, we got lucky. The embolism paused his cancer treatment. He was in the hospital for almost two weeks and during that time, and we had a team of nurses added to his daily care. I was able to sleep a little bit more than usual. And maybe most importantly, I was able to think. And then share that thinking with Steve. And when he was released, we talked. And we told the doctors at UCLA he had enough. And Steve was given two to three months.
He took three, despite his adamance that he wanted to die sooner rather than later. And he remained Steve until the end, the parts of his brain where his personality resided untouched by the tumor. Three days before he died he stopped talking entirely and just squeezed my hand.
The labor Anne referred to was relatively short. His breathing had started to change through the night and took a significant turn when I had to turn him over in the morning to do his daily hygiene. I couldn’t know in a couple of hours he’d be gone. If I did, I wouldn’t have moved him at all. But I didn’t want him to develop sores and I knew that being clean was important to him. As I turned him back to his resting position, the look on his face was jarring. His eyes were wide and his mouth was agape as though trying to say something. All that came out was the rattle of his breath, deeply labored and congested.
It was a Sunday, so Gopal wasn’t on call. The woman who was barely left my house without being punched. Hospice gets a lot of credit for doing a job so few want to do. And I will say Gopal was one of the best sources of comfort for Steve in his final weeks. At least Monday through Friday. On the weekends, the hospice service sent a stranger, and I had to beg them to send her that day. She was judgmental and disapproving that he wasn’t in his medical bed. She was focused on paperwork and not the fact that a man was dying. She was worse than useless. She was a barrier to peace.
I eventually kicked her out of the bedroom and let friends corral her.
Still, we were lucky. We had time to get Larry to the house and Steve died within the hour that he arrived, holding his hand. His breaths were agony to listen to. There was work in his final moments and I kept a metronome in my head, trying to discern a change in tempo, to see if the song was about to end. I pleaded for him to let go, that I loved him, that I’d be ok, to go, just let go. And eventually he did. There was no gradual slowing. He was breathing a rhythm, and then there was a long pause which I thought was the end. But it wasn’t. He took a couple more short breaths between long pauses and then he didn’t. And it was done. And I wept.
The rest of the morning and afternoon is hard for me to recall. It comes back in snippets every now and then, but mostly it’s like a watercolor in soft focus. I’ve asked friends who were there that day to write down what they remember for me so I can try and see it from other people’s perspectives. But it still eludes examination. Maybe the shock of loss keeps the memories fogged for a reason. Maybe I’m not meant to re-experience that level of pain. Another parallel with labor — we know intrinsically we experienced incredible pain but are prevented from acutely remembering it.
It was labor though. Dying took work on Steve’s part. But it was a gentle work, as these things go. Or so I’m told. My own experience with watching someone exit life is pretty limited. Gopal told me that in his 30-years as a hospice nurse he decided there were two ways he wanted to die – brain tumor or Alzheimer’s. He said it was easiest on the patient, that their deaths were rarely agitated or unsettled. He did note that their deaths were harder on the people who loved them, for a variety of reasons unique to each situation. But for the patient, there was no pain, sometimes no awareness, and very little resistance. I was comforted by the idea that Steve had a death his hospice nurse would have chosen for himself.
But it has been hard. Excruciating, really. Made easier only by being upfront and honest about it. If I had to expend energy on hiding it or protecting other people from my pain, I wouldn’t be able to live. Not the way I want to or the way Steve would have wanted me to. And I certainly wouldn’t be able to be able to really thrive, which I feel I am finally starting to do.
It took about a year, which in many cultures is the traditional period of official mourning for a widow. There may be more intelligence in that than just tradition. I’m fond of saying there is no timeline for grief, but it is helpful to have this mark, this motivation to evolve and shift the experience based on nothing more than the cosmic rotation of the planet around the sun.
It’s not over. It’s just a different kind of work. And I’m lucky to be able to do it.