Last week, child-star-turned-rapper Aaron Carter died unexpectedly. And like clockwork, the internet became a virtual Wailing Wall. Strangers posted tributes, speculated about the cause of his death, and in some instances shared crude and untimely critiques of the late Carter. It happens like this every time. We scour the internet to find out, “What happened?! Was it suicide? Was he secretly sick like Chadwick Boseman? Was there foul play?” If we had a chance encounter or a peripheral relationship with someone who has died, we dig up that one photo of us together and make sure the world knows “hey, I lost them too, you know?” We are so curious about death and ready to claim it, but only in the past tense and hardly ever with nuance.
I’ve been fascinated with death from a young age. That sounds so grossly cliché. But it’s true. As a teen I latched onto the inevitability of change—the death of everything— as a comforting truth. “This too shall pass,” reads my very first tattoo, etched across the side of my ribs at the age of 18. My second tattoo, a line of script on the inside of my right forearm, reads, “Memento Mori.” Remember your mortality. Well before I got this text inked, the concept had percolated into my high school art projects, courtesy of a one Patti Smith. The certainty of time’s passing had become a salve for the discomforts of my daily life, and I took pleasure in translating these grim reminders into visual art.
My capstone project Senior year was even titled Memento Mori. It was a collection of mixed media works that grappled with the passage of time, inevitable ends, and the precariousness of life. Fresh flowers adorned several works, carefully placed or pressed in the days before we hung the show. The predestined deterioration of the blooms over the course of 3 weeks became an integral element of the work. Each day, the works were different, at a different stage in their life, never to look the same again.
Today, I have a much more intimate understanding of death and dying. This month brings the 2nd anniversary of my dad’s death, and next month marks the 3rd anniversary of my mom’s. They died 11 months apart; my dad just before Thanksgiving, my mom just before Christmas. For the rest of my life, the holiday season will coincide with my very own season of grief. They say that your body knows these dates, even when it slips your mind. But I’m in good company in these coming months, seeing as more people die in winter— particularly around the holidays—than any other time of year. I learned this from the deacon at the Catholic Church were we hosted my mom’s funeral. A Franciscan priest presided over the service, an apt fit given my mom’s love for the Franciscans. He wore the traditional brown robe with a knotted cord belt, not unlike how you’d picture a monk might look, except on his feet he sported socks with Birkenstocks. I took a mental image of this man’s footwear, stored away to giggle at once the grief wasn’t so big. The grief is still really big. But maybe you can laugh at the thought of a priest wearing socks with Birkenstocks.
My understanding of death and dying is inextricably linked to politics of care. Through the process of caring for my mom, and then my dad, as their bodies and minds declined to the point of complete dependence, I learned to look at this act not as a familial obligation that I inherently owed to them, but rather as a prefiguration of the future world I want for us all. Don’t get me wrong, I’m not trying to romanticize caregiving for the ill and dying. But in the early days, I felt forced into the role of caregiver, purely by virtue of an assumed family obligation that I personally did not subscribe to… but felt obligated to nonetheless. I had cultivated a deep sense of independence and individualism from my family; there was so much unresolved pain and trauma and dysfunction there, it simply made more sense for me to become self-sufficient. It felt like I could never go to my parents for a healthy dose of unconditional care and understanding, so why did I have to suddenly become fully available to provide care to them?
Over time, I warmed to the role of caregiver more. I felt the double edged sword of wanting it to be over and not wanting them to be gone. But you can’t have both. And in the space between, I had a lot of time to think about how I’d wished we’d been better at talking about death before it was on our doorstep.
Back when I was taking care of my dad, I used to come home and draw a bath (I get my love of long baths from my mom.) I would soak in the tub for well over an hour, dissolving the day’s frustrations away and reading Being Mortal, a book by Indian American surgeon Atul Gawande. The book is a personal and scientific exploration of end-of-life care and what really matters in the end. It provided me language to better articulate and examine the phenomenon that I was living through firsthand.
In recent centuries, advancements in medicine and public health have increased human life expectancy considerably. Our population of senior citizens is significantly larger than it was even just a few decades ago. And we don’t have enough doctors, healthcare professionals, caregiving systems, or even simply societal understanding to care for this increasing population of aging individuals.
Whereas Eastern cultures traditionally have practiced communal caregiving in multigenerational systems, this has been supplanted in the West by nuclear families, cultures of shame around illness, and the medicalization of aging. In the East, old folks are revered, considered sources of knowledge and wisdom, and are cared for accordingly. In the West, old people are viewed as a burden, as non-productive members of society undeserving of quality of life if they can’t provide it for themselves. It’s sickening.
And the field of medicine plays right into this! Malcom Gladwell’s review of the book says, “American medicine, Being Mortal reminds us, has prepared itself for life but not for death.” Rather than acknowledging the limitations of medicine, the healthcare system prioritizes keeping people “safe” and alive over providing autonomy and supporting quality of life at the end of their life. You’ve seen it before, you’ve heard people say something to the effect of, “what kind of life is this to live?” Some people are kept alive and miserable rather than being allowed to die comfortably. Fighting the natural process can often create more suffering than relief.
Now there are many caveats I could add here about how socialized ableism has skewed our idea of what kind of life is worth living. So put a pin in that if it’s coming up for you— but know that at the end of the day, it should be each individual’s choice about what is important to them in the end. Additionally, I want to reinforce that we’re talking about age-related illness in particular here. Talking about illness and disability and mental health across the ages is a whole other can of worms that I don’t have the capacity to address in this space at this time.
Anyways!
Death and dying are natural. Deterioration and illness are a part of life— a morally neutral part of life at that. But because we have collectively rejected our responsibility to acknowledge the reality of death, death and illness can often feel like a failure. This further reinforces our aversion to talking about it head on. Hell, some people even have a hard time saying someone died. Instead we’ve come up with all of these passive euphemisms, “she passed away,” “he was called home,” “they left us”… but you’ll almost exclusively catch me delivering this information bluntly—“my parents are dead”—no matter how uncomfortable it makes people. Avoiding the topic of death and dying is not helping us. In many instances, it’s hurting us.
Gawande references a study on Stage IV lung cancer patients; the patients who saw a palliative care specialist early on in their care— in addition to their normal oncology care— ultimately entered hospice sooner but suffered less and lived longer than those who did not have proactive discussions about palliative care. Gawande posits, “if end-of-life discussions were an experimental drug, the FDA would approve it.”
Confronting mortality enables us to improve our wellness and quality of life, and that of our loved ones. It’s scary. I understand firsthand how much easier it is to just push it to the back of your mind, even when it’s staring you in the face. But I’m telling you that I wish I’d had the chance to do it differently. I wish that my parents hadn’t been afraid to talk about death. I wish that I hadn’t been afraid to talk about death with them. It would have made many things easier on all of us in the end.
These days, my proximity to death has shifted my politics dramatically. My parents’ deaths accelerated personal growth in new directions, directions that have led me to deep politics of care, collectivism, abolition, and most recently, Marxism. Death has made me the ultimate cynic and at the same time, the ultimate lover. Death has allowed me to abandon binaries and get cozy in the spaces between. Death has enabled me to outgrow my individualist coping mechanisms, and begin to reach outwards into my ecosystem for community-based care and healing. Death has made me better at talking about death, but I’ve still got a long way to go, and I’d love to practice with you.
If you share this grief season with me, here are a few grief resources I can offer that I personally benefitted from:
Death Benefits: A particularly poignant book for folks with complicated parental relationships.
The Dead Mom’s Club: My favorite book for a humorous and validating take on watching a parent die and what comes afterwards.
Grief Therapy Group: I struggled with solo grief therapy, but found that processing in community was both easier and more beneficial. I participated in a virtual Bereavement Group facilitated by the Center for Loss & Renewal and had a wonderful experience.