A few years ago I attended the wedding of a former boyfriend. Shortly after we split up, he came out and, following a brief rift, we became close friends. I was delighted to be celebrating his union with the wonderful man he was marrying. As the guests mingled before the ceremony, we asked each other how we had come to know David and Steven. “I used to be David’s girlfriend,” I said to those who asked me. “We lived together for a couple of years.” A few people knew this, but most didn’t, and I saw ripples of surprise — David once had a girlfriend?! Was this something I shouldn’t have said? It didn’t seem all that shocking; it happens all the time. And yet, I was aware I’d said something many people might have kept under wraps.
When I was growing up there were times when my mother and father — or sometimes my mother and other women — would huddle together and whisper about other people. Later I would push to find out who and what they’d been talking about. It was usually about people who were going through hard times: a couple getting a divorce, a woman having a “nervous breakdown,” another couple whose daughter had had an out-of-wedlock pregnancy, someone else had been fired. Once the whispering was about a family whose daughter — who I knew — had been adopted. Sometimes the whispering was about people who were gay, or suspected of being gay. I remember the hushed tones, the furrowed brows, the shaking of heads, the atmosphere of dismay and disapproval, as if these things were grotesque life failures, or defects of character, things that should never be openly discussed. Disease, too, was addressed in those whispering huddles, particularly cancer, as if the patient had behaved in some way to bring it on herself.
As I moved into the world, it didn’t take long to see that these things, that had been so off-limits to talk about in my childhood, were commonplace — they happened routinely to many people. It didn’t mean that those people were defective, or ill-intentioned, or “spiritually impure” — anyone could have a marriage fall apart, or get cancer, or become come depressed, or recognize their true sexual preference. Why was so much shame attached to these very normal human experiences?
The filmmaker who has been documenting my journey to death recently observed that it is my inclination to try to normalize such things. It didn’t take much reflection on my part to see that she’s right. All my adult life I’ve wanted to blast open those whispering huddles and bring those discussions out of the shadows and into the light. To demystify them. To de-pathologize them. To strip them of shame.
This impulse was on display when my husband and I adopted a child. It was an open adoption, and we met and visited with the birthmother, Karla, a few times while she was pregnant. We met the birthfather too, though they were no longer a couple. We attended Ben’s birth, and we have stayed in touch with Karla and her family, traveling to see one another and attending each other’s major life events. We are part of each other’s extended families; we love one another. Adopting Ben was a pivotal moment in my life, not only because I became a mother then, but I also felt, in taking another woman’s child, I had become a part of the human family in a new way. Ben has known his birth relatives all his life. It hasn’t been awkward; it’s simply been the way his life has unfolded. Normal. I adore Ben and feel deeply connected to Karla. And from the beginning I have never wanted to hide the experience; on the contrary, since it was so joyful and life-changing I have wanted to share it with the world.
I’m disturbed by how much shame abounds in our culture. Maybe not the kind of desirable shame that would prevent politicians from doing reprehensible things, but shame that accrues around our failures and imperfections, around addiction and poverty and disease, etc. I am grateful for most of my upbringing, but I wish I hadn’t learned to be so fearful of failure and imperfection. That fear prevented me from doing certain things I might have enjoyed. I have come to revile the striving for perfection I see in myself, which is also encouraged by the culture. Why does it persist when it’s so well-known that we learn so much from our failures and dark times. There were years after I published my first two books when I couldn’t get published. I knew my work was getting better, but because the world wasn’t seeing this, I often felt like a failure. I continued to write because it was habit by then, and because it was the activity that grounded me and brought me joy. But, nevertheless, I wondered if I should continue to write if no one was reading my work. As I wrestled with that question, I came to realize that of course I would keep writing, that it had become an essential part of who I was — publishing wasn’t the point. I know there are numerous other writers who struggle with this same question and feel defeated by the world of commerce that doesn’t value their art. It’s a normal part of life for most writers. I hope some of them will read this and take heart.
So here I am, the normalizer, the one who is hellbent on acknowledging the elephant in the room — and I’ve been diagnosed with ALS. From the very outset I knew I would talk about my growing weakness, as well as the imminence of death. But I first had to grapple a bit with my mother’s legacy. She held the view that most illnesses are caused by psychological problems manifesting themselves in the body. All my life I’ve resisted this reductive view of illness, though I agree that stress can wreak havoc in the body and exacerbate underlying conditions. Still, every once in a while, my mind wanders into my mother’s corner, wondering what I might have done or thought to bring this on myself? Or were there things I might have done to avert it? An impossible quest with a disease whose cause is unknown. Mostly I accept the random nature of biology and DNA.
So, back to the elephant in the room — death. Perhaps, if you’re a regular reader of this blog, you are done hearing about death. I shudder to think I’m becoming like a political ad you see on TV, or like a politician’s request for money you quickly delete from your phone. But since I spend a certain amount of time every day thinking about death, and because I’ve made it my mission to normalize it, I must keep writing about it. Perhaps the impulse is born from years of teaching, or maybe it’s because I’m a bit of a provocateur, someone who once relished taking on an acting role that would require her to go on stage naked (the production was canceled before I was put to the test!). Now I’m trying to show up for death in the only way I know how, by bringing as many people as I can along with me. I want you to join me on my walk to death. I don’t mean dying with me, only watching with open eyes and receptive hearts. I hope you won’t flinch. Feel free to laugh or cry. I know we’ll have great conversations. I hope you’ll think about your own death too, make the plans you need to make, and find a way to not be too scared. It’s all so normal, right?