March 14, 2016 by Alison Palkhivala
Let’s talk about death, maybe
I flip on the car radio and Far too Young to Die by Panic! at the Disco starts playing. The irony is almost unbearable. I’m on my way to the funeral of a 36-year-old friend. She’s leaving behind a family stunned by loss, a family that includes her two young children.
I sat with Trish at a restaurant terrace on a warm fall evening just a few months ago, savoring pulled pork nachos. She was celebrating her birthday, and chronicling, in her comic, upbeat way, her unending bouts of stomach pain, pain that was either dismissed outright or treated ineffectively with yet another round of antibiotics (11 in total). Her stories left us doubled over with laughter at her wit and horror at her plight. We did not know her eventual diagnosis would be so dire, though I think Trish knew something serious was up.
I had no problem listening to Trish vent her frustration with her own health and our failing Montreal healthcare system. I’m a medical writer, after all, and I pride myself on being able to talk about life’s icky stuff. I’ve also learned to manage my own social and physical awkwardness by just plowing through life, the quintessential bull in the china shop.
A couple of months later, Trish started a blog chronicling her diagnosis and treatment of liver cancer. She didn’t go into much detail about her prognosis, but I know enough about medicine to realize early on it wasn’t good. And all of my brash, burn-through-the-awkwardness moxy left me. Trish’s blog is something of a breakthrough. Want to know what it feels like to be dying without the inconvenience of actually being sick? Read Trish’s blog. And she made it easy for the rest of us by indicating exactly what she needed in the way of support.
Regrets and Missed Opportunities
Yet I remained frozen. I had a million reasons why I didn’t go see her. For the nearly 4 months of her illness, someone in our home had a cold or flu. I was afraid to expose her fragile chemo-addled body to our germs. I had my own busy schedule, with my husband going on sick leave and me stepping up my professional life. I didn’t really know her well. Would she really want to see me? The crystal clear answer from her blog was YES. She did not want to be alone with her thoughts. Her family (particularly her sister Kristen) had rallied to her side, but they were all exhausted and stressed out. She begged for company, even a few minutes of time, from anyone. And still I did not go.
Her blog stopped, and I learned she had been transferred to palliative care. A mutual friend came down from Toronto to spend time with her. This is my chance! I thought. Ariana, being close to both of us, could be the buffer I needed. I wouldn’t feel so awkward with her by my side.
Ariana visited her over the weekend, and through her Trish communicated her desire to have me come visit during the week, when most people are busy. She wanted me to help her finish her blog, as her hands now trembled too much to type, and maybe turn it into an e-book as a legacy for her children. I texted her early in the week to make a plan, but her sister responded that Trish had to be heavily sedated so that she would be able to tolerate undergoing some testing. Two days later, she died. I had missed my chance.
The Price of Silence
Bring up death with me. I dare you. I’ll talk your ear off. I’ll talk about how cultural taboos surrounding death in the modern Western world are incredibly damaging for both the dying and the not-expecting-to-die-imminently (because let’s face it, we’re all dying). It means palliative care wards are not listed in hospital directories. It means communities complain about “traffic” when the building of a small, local palliative care homes is proposed (if only the dying received enough visitors to cause a traffic problem). It means few people visit the dying because they don’t know what to say. Even family members shy away. Worst of all is the artificial divide between palliative care and the rest of medicine. The knowledge and tools for pain management used in palliative care are banned in the rest of medicine. Trish actually had to decide between remaining in the oncology ward where palliative care medicines were not allowed or moved to the palliative care ward, where life-saving measures she might need were not allowed. What kind of ridiculous choice is that? In the United States, to receive hospice care, one must sign an agreement giving up any attempt at curative therapy. Why? Because we’re all a little bit crazy when it comes to that one thing that we all have to do.
No, You Don’t have to “Move On”
Grieving is almost as marred by cultural taboos as dying. My best friend was recently told it was time for her to “move on” after the death of a friend. It had only been a month. I can’t tell you how to speak to those who grieve except to say that you never, ever say “move on”. My friend and colleague Suzanne Boles, who lost her husband to a sudden illness, writes eloquently about grieving and the fact that there is no uniform timeline.
I don’t really know how to mourn Trish’s death. I’m so angry it overwhelms the sadness. All day I keep muttering to myself Mother Nature is a bitch! What do I do with all this anger? It’s masking sadness, fear, and vulnerability, and I wish I had the language to communicate it better.
Bloggers like Trish and Suzanne are heroes. They braved the taboos during their darkest, most vulnerable moments to talk about what most of us consider unthinkable. They’re starting the conversation. For everyone’s sake, let’s continue it.