I Keep Losing The Sky
Part 1: Dying Is BS
I
If you want to have a peaceful death
cultivate a peaceful mind while you are still alive
~ Pema Chodron, How We Live is How We Die (165) ~
The night after Deb and I met with the Palliative Care Nurse Practitioner, we sat on the sofa and ate a soft-food dinner of scrambled eggs and cottage cheese and talked about her prognosis. Deb told my wife and me that she would opt for medical aid in dying, MAiD.
Wanting to be clear, I asked her how committed she was to her decision. Her expression prompted me to ask in a different way.
“Is there anything that a doctor could say that would change your mind?”
“Oh. No.” Two crisp syllables. Clear.
“There’s nothing they can say,” Deb says, handing me her plate. “The surgery is out of the question.”
The oncologist had said that the surgery would remove 75% of her tongue. The biopsy in June revealed that the squamous cell tumor on her tongue was 2.3 x 5.1 x 2.5 centimeters (.90 x 2.0 x .98 inches), and the cancer had spread to her lymph node on the left side. Physical therapy following the surgery would be to restore her ability to swallow and to speak. Deb would need a feeding tube immediately following surgery which could become a permanent placement. Radiation therapy would almost be a certainty.
“I’m not afraid of death,” she says. The cancer has taken over her tongue, crossed the mid-line, making it difficult to understand her. “It’s just the next adventure.”
***
Dying is BS.
The Hospice Intake Nurse reads the note my sister has written in purple ink on a corner of a page torn from one of her journals. The nurse nods and repeats in a soft voice, “dying is bs.”
Deb’s belief that death is the next adventure is not contradictory to her disdain for the process of dying. Both things can be true.
After a pause, Hospice Nurse tells Deb that two strong beliefs guide her work: a person should not live in pain, and nobody should die alone.
That’s why I’m here, in Deb’s bedroom, in her apartment, in Del Norte, a small rural town in the San Luis Valley of Colorado, on this Thursday after Labor Day 2024. To transition from palliative care to home hospice, she needs to have a person living with her 24/7.
Before they delve into my sister’s needs, her pain level, and her current meds, Deb asks about hospice’s attitude toward MAiD.
I am surprised by her sudden entry into the conversation. But it is necessary. Before we get into details about hospice services – the availability of nurses, the social worker, and the hospice chaplain – it’s necessary to know their stance on medical aid in dying. If hospice was not supportive, what was our plan?
Hospice Nurse nods understandingly. She’s only been here five minutes, but I feel comfortable with her. She didn’t seem to notice the eclectic furnishings in the sparse living room. She didn’t scan the bedroom floor, cluttered with clothes spilling from the closet, before she sat on the ottoman I brought in from the living room. She was completely focused on the conversation with my sister.
“As a hospice, an organization, we are not for or against MAiD. At the end of the day, it’s your decision. Nurses or other staff who are present if you choose to take the MAiD medication will be off the clock and here independently to support you.”
Before she leaves, they go over pain management, nutrition, changes in medications, the availability of oxygen. I take notes in my journal and on the packet Hospice Nurse has handed me. I’m caught off guard when the topic shifts to Deb’s choices for mortuary services. Deb takes this reality in stride.
Hospice Nurse stands up and asks, “I don’t know if you are a hugger. I am. May I give you a hug?”
Deb says, “I was going to ask you the same thing.” They embrace for what seems to be a long time.
