Speak the speech, I pray you

Death is all around us.

The pandemic has circled the world and also hit close to home.

I read about death and write about death every day.

For almost a year now, I’ve hardly left my house. I depend on recordings made by our photographer of press conferences, I watch meetings on my computer, I call people for interviews and email them with questions to write stories every single day — most of them about COVID-19.

I have four of the comorbidities listed this week by the state — cancer, Stage 3 Chronic Kidney Disease, pulmonary disease, and a heart condition — so I figured that getting COVID-19 would end my life.

This has not necessarily been a bad thing. It has made me recognize death.

My husband and I finally contacted a lawyer to write our will. We should, of course, have done this years ago when we had young children. But death seemed too far away then, not something I saw as an inevitable part of life.

Over the years, I have used this space to call for legislation in our state that would allow terminally ill patients to decide, with their doctors, when they had enough of pain and life to leave it with dignity and on their own terms.

In 2015, we asked: Do we, as a society, treat our dogs better than ourselves? We wrote then of Brittany Maynard’s death and the video she made the day she died. 

Maynard, at 29, was diagnosed with an aggressive form of brain cancer. She moved with her husband to Oregon, one of the states that have passed laws to allow lethal prescriptions for terminally ill adults.

She describes in the video how she has gotten sicker each day since her diagnosis, suffering “terrifying seizures.” “I will die upstairs, in the bedroom I share with my husband,” Maynard says, looking resolute but not frightened. “I hope my family is proud of me and the choice I’ve made.”

In 2018, we wrote about two local doctors fighting for legislation that would let terminally ill patients have more control over how and when they die.

Margaret Craven Snowden of New Scotland, a retired obstetrician and gynecologist, believes that birth and death are part of one natural cycle. When a terminally ill patient determines his suffering is “simply unacceptable,” he should have a way out when all else fails, she said.

Dr. Mary Applegate of Delmar, with a career in public health, described the death of a close friend with amyotrophic lateral sclerosis, or ALS. As he steadily declined and was aware of the worse to come, he brought on his own death in the only way legally open to him in New York. “He starved himself to death,” said Applegate, which was “awful for him and even more awful, I think, for his family.”

Like the majority of New Yorkers, we believe that legislation should be passed to allow medical aid in dying for those terminally ill people who would choose it.

But that is not what we’re focusing on today. We are writing this with Valentine’s Day in mind.

While death is all around us, so, too, is love. Most of us have people in our lives we care about and who care about us.

The kind thing to do is to talk with them now, while you are able, about how you want to die.

Within the current New York State system, there are forms you can fill out about when you want to stop life-prolonging measures and about who will follow through with your wishes if you are not able.

Viewing the world as I do now, through my computer screen, I came across a remarkable video of the Harlem Gospel Choir singing a song called “This Is Your Show.”

The video is sponsored by Compassion & Choices, a not-for-profit based in Oregon that advocates for end-of-life options. The song was written by Andrew Beall and Evan McCormack. You can find it at: compassionandchoices.org/this-is-your-show.

Carmen Ruby Floyd, dressed in shimmering purple, has the center square, surrounded intermittently by choir singers and musicians. They smile and wave between their on-screen squares.

“It’s all about your vision/ Take a second and listen/ to the rhythm of choice/ ’Cause it’s your decision/ To know the options/ To know your position/ Let’s start the conversation,” Floyd sings thoughtfully, index finger poised.

She belts out the chorus: “This is your show/ Before the curtains close/ Before the lights go low/ You’re gonna take control/You’re awake right now/ And when you take your bow/ You’re gonna sing out loud:/ ‘This is my life!’”

The video provides links to a guide and tool kit for end-of-life decisions.

We advise our readers to do as the song advises — start the conversation. You may be surprised, once you do, how liberating it is. It can unburden not just you but the people who love you.

They will know, for sure, what matters to you and what role you want them to play in, as the song would have it, your final act.

Over three decades of working for The Altamont Enterprise, I have found some of my most worthwhile writing has been obituaries. I consider it a great privilege to talk to friends and family members about a person’s life and to try to accurately record that life — both for the community now and for the future generations to come.

I often cry silently along with the person sharing memories of a life well lived or sharing regrets. Sometimes there is laughter as a favorite story is retold or a quirky personality trait is recalled.

Consistently over the years, I have noted that the mourners who seem the most at peace are those who knew what their belovéd wanted in death.

As the Harlem Gospel Choir sings: We dream our whole lives for the perfect show/ We don’t dream how the curtain will close … Take the drama/ Outta death/ Take a breath/ Take  second/ Make another choice/ Listen to your voice ….”

And then use your voice to start the conversation with those you love.

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