Nine years ago tonight, I was in our house, sitting in the recliner beside Michael’s hospital bed in what we called the blue room, the one with the royal blue walls where once, shelves from floor to ceiling were filled with the thousands of CD’s and vinyl albums we’d accumulated during his record magnate days. That’s how we laughingly referred to his Record Service career, the one which merited the slogan – “We never made any money but we’ve seen all the best bands.” A record magnate, indeed.
That was before Michael had found his true vocation as a teacher, a vocation which he only practiced for a scant dozen years, before his wretched Merkel cell cancer diagnosis forced him to walk away from that life, so he could focus on trying to save himself. He rode the treatment rollercoaster for a few years before dire metastases caught up with him. January 31st marked the beginning of that 32 day and night stretch in the hospital, where he endured barbaric whole brain radiation before finally getting released to go home on March 3rd, 2017.
Given that his prognosis on January 31st was only four more weeks of survival, we somehow managed to get him to this night, May 27th, almost seventeen weeks later. More than 4 times that miserable prognosis. After an agonizing couple of weeks in late April and early May, I’d decided it was finally time to sign Michael up for hospice. His brain was inundated with cancer, he was mightily confused and I realized – we were finally at the end. The blue room, the music room was where he’d finish his life. The previous September, before getting his last dire diagnosis, we’d had one of the many unreal-feeling talks about his future absence, the talk when I told him I really wished he’d do something about our massive music collection that would make him feel okay about the future of it. I felt that dealing with it would be too much for me when I was grieving his absence. Anyway, I didn’t have anywhere near the expertise to decide its fate. So in the fall of 2016, he sold it to the highest bidder who had a social conscience and who shared his special feelings about music. I wasn’t anticipating what we’d be doing in that space only a few months later.
And so, the blue room was empty enough for the hospital bed, my chair where I could sleep right next to him, and enough room for our kids to squeeze in, as they pretty much camped out with us for that last week. We were exhausted from our death vigil. Our hospice nurse Carol, who stopped in every few days, was amazed that Michael was still staying alive. As if he could will away death. That last night, I sent my sleep-deprived children into the living room to pass out, at least for a while. And I sat with Michael, holding his hand, listening to his slower breathing, ready to give him another dose of medication if he gave any signs of pain or discomfort. I dozed on and off. Early in the morning on the 28th, Michael’s breaths finally gave out. I ran to wake the kids so they could kiss him goodbye while he was warm, pink-cheeked. They waited in the living room for the the hospice nurse to record what was required of her. I stayed with Michael until funeral home people came to take him away. When I was young, my mother had told me that my grandfather made her kiss the face of her dead younger sister, and that it was a terrible, unforgettable experience. On that morning, I kissed Michael on the mouth, one last time, which for me felt just right. And so quietly, almost anti-climactically, our five years plus ordeal ended. And I was left alone with mine, the one to come, learning to live by myself for the first time. I had gone from my parents’ home to a dorm room, to an apartment roommate and finally to Michael. My new life would begin at age 66.
But about the grief. Sadness wasn’t new to me, nor was the loss of loved ones. My little toddler cousin Iris, died on the day I graduated from eighth grade. Could anything have felt more wrong? The next deaths were more appropriate, age-wise, the loss of my grandparents, who’d lived nearby my whole life. But then, in the ‘80’s, my cousin, my dearest friend and my dad died in three consecutive years.
Grief became part of me, as all those deaths felt wrong, too soon. In 2012, when Michael was diagnosed with his deadly incurable cancer, my grief, always operating below my surface, became my daily companion. How could it be that my partner, my big love could ever be gone from me? I was twenty years old when I moved in with Michael, a veritable child. We were never apart, never broke up, but stayed and stayed through everything, our growing up, our differences, our towering arguments and our glorious reconciliations. We built a family, we built a life. This turn of events was the undoing of all my hopes for the future. But life and death do their things, don’t they? I understood that, even though I hated it. We all have less control than our minds can tolerate on a daily basis.
Michael was supposed to grow really old, older than me, like all those nonagenarians who populated his family tree. To leave me and our life in his sixties? Impossible for both of us to comprehend. Of course we knew that sometimes death is sudden, a crashing event that convulses whatever was once “normal.” So weren’t we fortunate – we had time to cry together, to lie in each other’s arms and talk through the dark hours until we exhausted ourselves. The radiation and surgery of 2013 held the line in his cancer for a while. But within a year of Michael’s initial treatments, his remission exploded, bringing a stunning two-three-months-to-live prognosis after what we thought would be just a run-of-the-mill scan. Then on came the chemotherapy cocktails which he endured while I anxiously stayed right next to him, my pal grief bubbling just below my surface. And he lived, for a few years after that. The grief was an old companion by then. Every day I wrangled with it, trying to give it a place which wouldn’t undermine whatever we had left that was beautiful, meaningful or even just mundane.
By 2015, Michael was reaching the limit of available treatments. Cancer kept popping up after each effort expired. He was rapidly declining. He was denied entry into a clinical trial. He’d had all the chemotherapy in the limited protocols for his disease. He’d had radiation blasted at his bone metastases in his hips and his back. He had visible and palpable tumors on his head and neck. He had another expensive, random drug that worked intermittently on various cancers, but he suffered terrible side effects from it.
Life had more in store for us. In April, a phone call from my niece informed me that my brother had died. No warnings or preparation for that. Nor time. I was busily trying desperately to find anything out in the medical universe that might keep Michael alive. By late May, our oncologist got permission to try a new drug, under the FDA’s compassionate use drug program, an experimental one that initially, might make him sicker before showing any positive effects. And it did. Initially his body responded with an aggressive pleural effusion which required draining from his chest wall and left him utterly exhausted. An altogether terrifying time for us. Weeks passed. We saw small improvements. Moments alternated between hope, gratitude, fear and despair.
Then my mother died in the midst of that time. A broken hip at 91, a surgery, accompanied by hospital delirium which enhanced her dementia, finally felled her. I was somewhere between grief for her and frantic desperation for my life with my partner. I planned a hasty funeral so I could continue to care for Michael. Grief, fatigue and almost madness for me back then. A week later, my beloved dog Flash wasn’t acting normal. A trip to the vet brought a diagnosis of cancer. I held him while he was euthanized that very day. How could all this really be happening? But it was.
All those sad days tumbling around, the threat of the ultimate loss for me never far from my thoughts. I simply went into some weird executive function space which allowed me to do whatever was necessary. My daughter told me thought I’d survive the zombie apocalypse, the Auschwitz death march and other dreadful events. Of course Michael lived for more than a year after seven months of his ultimately life-saving treatment. And we were lucky that we had many good moments and great experiences during that bonus time. But I’ve realized that grief was burrowed into whatever is the essence of me, well before Michael was gone. And in truth, I was so utterly exhausted by the end of his life that figuring out how to live afterwards took me a long while, trying to live a positive life, to not let that weighty dark grief anchor sink me altogether.
Deferring Michael’s Celebration of Life for seven months helped me cope with the weight of his absence. Since I realized that because of his public presence as a popular teacher, in addition to his many years in local government and community affairs, that many people would want to attend his memorial. I could plan a proper event, taking place before Christmas, when many of his former students would be in town visiting their families. I knew they’d like to attend this affair. Without having to rush anything, I could breathe. I gave myself the opportunity to recover some strength, to think, to be bereft, to be hysterical, to be whatever I felt like, whenever I felt like it. I needed that time and am so glad I took it.
I made a slideshow of my handsome boy, something I’d never done before. I curated the memorabilia from his rich life into an exhibit-like display for the event. I arranged for the music with a beloved friend. I cried in the garden. I cried while I swam laps. I brought an album of beautiful, sentimental cards that Michael had written to me, into our bed, and slept with it for over a year. I climbed into my side of the bed every night, in between two body pillows I’d bought. Whenever I rolled over, I could sling my arm over something that I could pretend was that safe body I’d been accustomed to during our 45 years together. I marveled at the comforts he’d planned and left for me – the mourning quilt, made out of his clothes which I lean against, every night, to this day.
The heart-shaped pendant he designed for me with the inscription in his handwriting – my life, my love, heart – something for me to keep close for comfort through the rest of my life.
The CD’s he made for me, Love Songs for the Lovely Renee, and all those Renee Rocks CD’s. I was so touched by the hours he spent trying to create a space for me to be in, a space that might help me during the empty times to come. I never had any idea about what he was doing. Surprise gifts that I treasure every day.
As I grieved, lonely for everything we were to each other and for everything we shared, such utterly irreplaceable intimacy and trust, I had no idea about the level of PTSD I had built into my core. The term I used to describe myself was hyper vigilant, always ready to spring into action at the proverbial drop of a hat. Besides being sad, I needed to find my way back from that constant sensation of being ready for impending disaster, every single minute of my life. And I needed to manage my grief and that jittery life response for Michael, to honor his memory. His desire to be alive, to do anything to stay in this world with me and our family, to still lead a meaningful life, to be productive despite all the dreadful odds, had a powerful impact on me. He was an important example for me. And he didn’t want me to live in despair. He made all that clear before he died, even suggesting I might find new love. That of course wasn’t possible for me. But as for the rest? I don’t want to squander my time. I want to live the way we learned to, in the midst of the most daunting roadblock we ever faced. We did everything we could squeeze in to the healthy times. We were as in love and happy as we’d ever been, in spite of everything. Eventually, I drew strength from those days.
I’m doing my best. I still sleep on my side of the bed. Weird but true. I still hug my pillows. I don’t cry much because the truth is, I’ve never been much of a crier, always more likely to be angry first. And I still am angry and sad that Michael died too soon. I miss him daily. Still, he is in me and around me in ways that I can’t prove scientifically. But they’re real and I’m glad. I’ve done many of things we’d hoped to do together. I took our train rides. I’ve traveled as much as I can afford and even some places beyond that. I’ve written this blog for eight years, even stealing his words for its name. I’ve enhanced our beautiful garden, still tending his herbs which miraculously return every year, while creating a haven for our threatened pollinators.
I spend lots of time with our kids and their families, always wishing he was with us to share the joy. I go to the cherished places we where we spent happy days together, always feeling his presence, in a good way, not a sad one.
I am still in love with Michael and expect I will be until I’m dead. My memory is still pretty enormous and I feel lucky to have technicolor visions of a zillion remembered instances in my head. Sometimes, when I think of those pictures, or when I hear certain music or other happy triggers, my body experiences the same electrical charge, of whatever was the magic that pulled us together, all those 55 years ago. Love, lust, recognition, everything. I feel lucky to be emotionally intact after all the hard times. Yes, lucky. My big, big love apparently will outlast everything.
I spliced together the two photos above, one from 1972 and the other from 2016. I love the look in Michael’s eyes as he looked at me. I keep this in my living room. Periodically, I glance at over at those eyes. They warm me. My grief is quieter now, more companionable than torturous. That’s how I feel now, nine years out. We humans are resilient, are we not?