I talked to the hospice coordinator for the first time last week. I’d been putting it off, even after my daughter’s oncologist said it was probably time, even after I met with the pediatric palliative care team over the phone and started asking not-so-hard questions.
“Have you worked with teenagers before?” I wanted to know.
“No, but we’ve got some great nurses on staff and we’re right in your neighborhood. You won’t be alone.”
She was nice. She pulled over on her way home from visiting someone’s dying mother or father, aunt or uncle — and talked to me for an hour.
It’s odd how we don’t talk about dying until we’re faced with death. Everybody dies. Everybody grieves. We’re supremely unified by these inevitabilities, but we don’t talk about it. We break it away from every other part of our lives and give it its own name. Hospice — a dark, separate place.
Until you have to talk to a hospice coordinator about your dying child.
She spoke candidly, unafraid to peer into the abyss with me. That’s when I realized that the palliative care team at the hospital, and the local hospice organization in my community, are guides.
Life is filled with them, Sherpas who lead us through the unknown. Parents, teachers, mentors, friends…we seek advice and they give it, usually.
This place of dying — it’s a barren place, a place without paths — unless you’re not afraid to look for them. But I am afraid. I’m terrified.
I don’t know what to do with this fear. It’s heavy and immovable. It’s lonely trying to manage this level of grief and pretend to be strong, like trying to find a comfortable place to lie down in a room filled with hard surfaces and bright light.
It seems impossible to frame the depth of my pain into something people can understand. It’s fathomless, indefinable. Unless, of course, you’ve been here. Then you know that everything hurts, everything’s overly sensitive. Phrases like, “hang in there” and “stay strong” sound like mockery, shrieking into the most sensitive parts of what hurts, making it ache, like pressing on an open wound.
Dying is not about hanging on. It’s about letting go, reconciling, finding peace.
To deny this or ignore it’s happening makes it so much worse, so much more terrifying. It’s like being on a train hurtling towards a broken bridge.
I’m on a rollercoaster that jumped its track.
I’m on an elevator whose cable has snapped.
Down, down, down — that’s where I’m going, watching each consecutive scan my daughter gets come back with more dark shadows, watching the oncologist’s grim, compassionate face, wishing fervently that someone could lead us out of this mess, a Sherpa, to guide us back to wholeness.
Wishing doesn’t help. But I do it anyway. I wish we were a normal family, busy with life, watching our children grow, perpetually taken by surprise at how fast the seasons start, then end, then start again.
People say we’re living through hell and sometimes we say it too — my husband and I — that this is a living hell, being so close to cancer for nearly five years and not being able to stop it, stop what’s coming.
But denial isn’t the way through this.
I’ve been asking myself questions about death lately, forcing myself to look at my own fear of the inevitability that looms in front of all of us, and wondering how I can possibly help my daughter through it when I refuse to accept it myself, can barely stand to think about it at all.
I’ve begun reading about death, starting with a book called “Sacred Passage: How to Provide Fearless, Compassionate Care for the Dying” by Margaret Coberly. A former Emergency Room nurse who realized that her training lacked guidance for terminally ill patients, she studied Tibetan Buddhism and learned a different approach to dealing with death — an approach that starts with acceptance and acknowledgement.
It seems so simple and concrete — we all die. Ms. Coberly’s book made me realize that I’m woefully unprepared to help my daughter go through the process of dying in a way that is peaceful and, ultimately, healing. My own fear of death and my incredibly strong desire not to lose her are getting in the way.
When my daughter first got sick, I made it my mission to learn everything possible about her illness and potential treatments. I sought desperately for the cure, the magic bullet that would save her. But now, nearly five years to the day that she was diagnosed, I’m realizing I need to educate myself about death and dying. I need to be her Sherpa.
I’m reading “The Tibetan Book of the Dead” and thinking about my own death each day. What will it look like? How can I prepare for it? The fear’s still there, but I’ve discovered comfort in trying to understand how death fits into my life, and that blindly ignoring it is reckless, enabling me to treat time as an infinite resource.
I have a lot of work to do. Every time I write the word “death” my heart beats a little faster and my mind wants to shut down, close the blinds, go completely dark. But at least I’m finally standing close enough to the window to pull the curtain back, just a little bit.