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.â€
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.
