Facing grief, life, cancer with truth, not homilies.
When I traveled to The Badlands almost a decade ago, I stood fascinated before the striated rocky hills, aware that each colored line, piled atop one another, was packed with millions of years of history. Oceans, forests, animals and insects were reduced to slivers of their former selves, weathered by age and time. When I’m out in new places I consistently look for rocks with those telltale stripes and their hidden secrets of former lives.
Those beautiful otherworldly landscapes came to mind recently as I’ve been probing my own layers. My layers are internal, unseen. But I’ve learned through experience that those layers exist, holding secrets and mysteries that I’ve concealed from myself. Much of what’s hidden has been done unconsciously. I think that all people paper over parts of their lives. Some of that happens because we simply can’t hold everything that’s happened to us in a constant state of awareness. Too much information, too much to handle all at once. But some of these layers seem to be a reflexive survival skill that helps us manage what’s often too hard to hold in our heads. Pain, stress, panic, despair. Those of us lucky enough to not be overwhelmed by the past, to stay present in real time, walk forward every day and remain functional. I’m one of those people. But I needed to start poking around in my layers so I could accomplish what I want to do. And I must say, messing around in what’s been pushed down by newer layers has been surprising and even unnerving.
Background: Merkel cell carcinoma (MCC) is a rare, aggressive skin cancer. Merkel cell carcinoma (MCC) is a rare disease as there are only approximately 1500 new cases annually in the United States, according the American Cancer Society.
I’ve been wanting to write a book about what it’s like to live through your partner being diagnosed with an orphan cancer, a cancer so rare that there isn’t much money or research directed at its treatment. I want to share our experience as spouses, as individuals, as patient and caregiver, because I think that people out there will be able to find some help and relief in learning about our journey. I think my direct style and my willingness to say what many people won’t, might benefit those going through the impossible range of thoughts and feelings that accompany the shocking transition from what was an average daily life to sudden chaos and ultimately, death.
So far, I have a dedication, an introduction and a first chapter. But it’s been a confusing and rough slog, with the book going off in unexpected directions. I need to pause and reflect on what’s happening here. This isn’t a novel in which characters take on a life of their own, leading the author on a trip of discovery. This book is factual. I saved all of Michael’s medical records. I have all my journals which describe what happened to us. But I got stuck.
Writing is a consistent part of my life. I have journals that go back 55 years. I can read myself growing from a child through my teens to early womanhood, adult life and my present. I always wanted to write a book but never dreamed that this story would be my topic. But life has other plans. I thought that I would start writing and refer to my carefully ordered notes which are chronological. But when I tried to start reviewing the material that marked the beginning of this trip, I backed away almost immediately. Although I remember in great detail how we learned about and began to deal with Michael’s cancer, I was too raw to look at anything that wasn’t objective. My entries about how I felt and how I perceived Michael’s feelings and my children’s feelings were beyond my ability to cope. That was several months ago. Instead of writing the book, I’ve been writing this blog, writing letters to Michael and writing more journal entries about my current life.
Some time has passed. I decided I was ready to have another go at reading everything that happened since 2012. What stunning revelations. I recall that the morning Michael died, I texted his oncologist to let her know he was gone. After only about twenty minutes, she called to extend her condolences. But she also gave me a lecture about how in the next six months to a year, I was going to be at the highest risk for my own death than I’d ever been in my life. She strictly instructed me to get past the funeral arrangements and then do nothing but sleep, eat and exercise for the foreseeable future. She’d seen me in my relentless advocacy for Michael, staying at the hospital with him for 32 days and nights, never going home, and endlessly tending to his needs on all levels. I was with him round the clock for months with little downtime or respite from what was happening to him, to us. And I wanted it that way. I’m a planner by nature, an anticipator. I’m always down the road, trying to imagine whatever might be needed, trying to avoid unnecessary problems. Most importantly, I’d learned long ago that I didn’t want to live with regrets, wondering if there was something I might’ve done that could’ve prevented something dreadful from happening. I knew what I was doing at the time. But I had no inkling what the magnitude of taking on Michael’s disease really was for me. It simply needed to happen.
Since he’s been gone, I’ve been grieving, as is natural. In my mind, I’ve gone back to the 40 years we shared before we were struck by Merkel cell carcinoma. I hunger for the normal years when we worried about our kids, money, jobs, family problems. I remember how much fun we had and how we loved being with each other. The puzzle pieces that fit perfectly, the way we sank into each other’s comfort. And I remember how much we battled each other, we two opinionated characters who could quibble about anything. That’s the life I’ve been inhabiting since last May, after he died.
So it was shocking to me when I started reading the almost daily entries in my journals. The weeping. The arguing. The despair. The struggles about him not wanting to eat while I forcefully pushed him to keep at it. My moving forward at my usual breakneck pace while Michael edged slowly on, annoyed at my speed and resentful of me imposing my style on his. The desperate clutching of each other’s bodies as we tried to hang on to every second of life together. The years’ worth of trips that we squeezed into the moments when he was healthy enough to travel, trying to live the most compressed retirement we could grab before the cancer caught him again. And again. We tried hard to keep life as normal as we could with our kids and grandchildren. We pared down our social life so we could all be together as much as possible. On and on we went for over 5 years on the wild rhythms of life and death.
As I read, I remembered it all. But I’ve tried to seal off how awfully hard it really was, how debilitated I became as time passed and we both eroded from the strain. I read an entry in which my daughter called me a cockroach, that creature which has survived no matter what had happened to stomp it out. And I thought, is that really me? Is that how I was built, to crawl through fire and ash and emerge, battered but somehow intact on the other side?
As hard as being without my great love is, I am after all, still here. I didn’t die, like Michael’s doctor told me I might. I know I’m not the same person as I was before Merkel cell became part of my world. As many other events necessitated, I’ve altered and adapted to what the world has put in front of me. But in this brief period of time since Michael’s death, I didn’t know that I would rapidly build new layers inside of me, that softened the harsh reality of what we lived through, particularly during his final months. My joy in life is subdued. I still lean heavily on the bond we shared that grew and grew for our life together and flourished so much that it’s still alive inside me. Perhaps it’s the primary reason that I felt stunned at the distance I’ve put between me now and me then. That powerful relationship has trumped the agony of our cancer adventure. I find that what came before is the space I’ve been occupying and has changed my perception of the dark time.
A new layer added to the myriad levels of me. I’m grateful I have the documentary evidence to analyze myself, the way geologists study the physical world. Because my interior is as laden with complexity as those hills which have intrigued me. More territory to explore. Time to proceed to my next chapter.