Better Than Dead

I got some devastating news about a friend yesterday. We had thought she’d gone into early onset dementia, which was tragic enough, but the final diagnosis was worse. She has Creuzfeldt-Jakob Disease, also called subacute spongiform encephalopathy, also known in more tabloid terms as Mad Cow Disease.

It’s extremely rare (one per 1 million worldwide according to the Mayo Clinic), progresses rapidly, is incurable, and leads to death. Usually within a year of the onset of acute symptoms. All that can be done for her now is palliative care. They’re moving her to “a nice place” close to her brother.

How did she get this disease? No one will ever know. There was talk in the family about a trip she took to Egypt a few years back where she got really sick while there, but—also according to the Mayo Clinic—classic CJD hasn’t been linked to eating contaminated meat so who the hell knows? (It does occur, but it’s a variant of classic CJD and even rarer.) It can also develop spontaneously, usually in older people, due to abnormal changes in a kind of protein called prions.

There’s the clinical side of all that. Forgive me, but that’s how I deal with things. First the shock and grief, then I research, then I write, then a cycle back to grief. Sometimes while I’m writing. It’s my coping mechanism. But this isn’t about me, it’s about my friend.

She was such a bright star, full of life and abundant humor—sometimes sweet, sometimes pure delight and clever, sometimes mordant—but she always left us laughing. She had such a quick wit, a supple mind, strongly held opinions, abiding curiosity. She adored silent film and became something of a sourcebook for others who wanted information. She loved research and by determination and hardcore digging turned herself into an expert on the murder of Virginia Rappe by silent film star Fatty Arbuckle. It was her mission to redeem the reputation of poor Virginia who the lawyers (to save Arbuckle) and the studios (to limit liability) and the salacious press (to sell newspapers) dragged thoroughly through the mud. (It worked. Arbuckle was acquitted, though he never worked in Hollywood again, the press sold a lot of papers, and poor Virginia was labeled an irredeemable tramp not worth giving a damn about.) My friend had all the material ready and planned to write a book exposing this miscarriage of justice. All she managed were a few articles before life caught up with her.

If this sounds like a eulogy, it is. My friend is still alive, but the crystal palace of who she is—was—has already been shattered. Already she’s forgotten the names of friends. When I talked to her about a month ago, she asked me to send her a card through the old school mail with all my contact information (which she already had) so she’d have something she could hold in her hand and keep safe. I did. That may be why she and her caregiver thought to call me yesterday. They were both on the phone so the caregiver could fill in the many gaps for my friend. “She’s very concerned,” the caregiver told me, “that her friends will feel abandoned.” “No, darling,” I told my friend. “We don’t think that. We understand.”

My friend said, “Please tell the long-haired girl. Do you know who I mean?” I said the Long-Haired Girl’s name and she said gratefully, “Yes! Yes! Oh, how is she doing? I’m so worried about her. That disease.” The Long-Haired Girl—whose name she remembered a month ago—has been fighting cancer. I was glad to tell my friend (not for the first time) that it was in remission and to hear the overwhelming relief in her voice.

So that’s where we are: her trailing bits of shattered crystal behind herself as she moves rapidly to her final destination. And no one can pick up the pieces.

So much death this year. Each life precious. Every human being a shining world lost forever—except in the fragile crystal palace of those who still remember them.

Random quote of the day:

“For what is it to die but to stand naked in the wind and to melt into the sun?
    And what is it to cease breathing, but to free the breath from its restless tides,
        that it may rise and expand and seek God unencumbered?

Only when you drink from the river of silence shall you indeed sing.
    And when you have reached the mountain top, then you shall begin to climb.
    And when the earth shall claim your limbs, then shall you truly dance.”

—Kahlil Gibran, from “On Death,” The Prophet

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Desus and Mero, Beyoncé, or the Marine Corps Marching Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“Death, that is the most important of all ideas.”

—Henri Barbusse, L’Enfer
    (tr. John Rodker)

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Desus and Mero, Beyoncé, or the Marine Corps Marching Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“A writer can have, ultimately, one of two styles: he can write in a manner that implies death is inevitable, or he can write in a manner that implies that death is not inevitable….If you write as if you believe that ultimately you and everyone else alive will be dead, there is a chance that you will write in a pretty earnest style. Otherwise you are apt to be either pompous or soft. On the other hand, in order not to be a fool, you must believe that as much as death is inevitable life is inevitable.

—William Saroyan, preface to The Daring Young Man on the Flying Trapeze

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“In cold life, magic has a tendency to shrink back into the books. In the struggle against hungry death, we fall back on the physical.”

—Phil Rickman, The Heresy of Dr. Dee

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“What the grave says,
The nest denies.”

—Theodore Roethke, “Unfold! Unfold!”

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“I like grit, I like love and death, I’m tired of irony.”

—Jim Harrison, Conversations With Jim Harrison, ed. Robert DeMott

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“Death is the ultimate mystery, which, alas, love isn’t, so it’s more enticing as subject matter.”

—Luisa Valenzuela, The Paris Review, Issue 160, Winter 2001

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“One day in the afternoon of the world, glum death will come and sit in you, and when you get up to walk, you will be as glum as death, but if you’re lucky, this will only make the fun better and the love greater.”

—William Saroyan, “One Day in the Afternoon of the World”

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.

Random quote of the day:

“Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

—Oliver Sacks, “My Own Life: Oliver Sacks on Learning He Has Terminal Cancer,” New York Times, February 19, 2015

Disclaimer: The views expressed in this random quote of the day do not necessarily reflect the views of the poster, her immediate family, Key and Peele, Celine Dion, or Sgt. Pepper’s Lonely Hearts Club Band. They do, however, sometimes reflect the views of the Cottingley Fairies.