Nightmares, Science Fiction, Tilda, and the UN-Truth About Alzheimer’s
BY JEAN CARPER, DIRECTOR
I first discovered Alzheimer’s in 1982, when as CNN’s senior medical correspondent, I did a report on this little-known disease that was threatening to inflict epidemic destruction on elderly brains. Top scientists predicted a cure in five to ten years.
I went on to write several best selling books, including "Stop Aging Now!" Then at age 69 I was shocked to learn from a routine blood test that I have the major gene for late-age Alzheimer’s. With a cure still nowhere in sight, I became obsessed, collecting everything I could find about the disease, resulting in a book--“100 Simple Things You Can Do to Prevent Alzheimer’s.”
If I expected this to calm my fear, I was wrong. Soon after, the nightmares began!
My only previous nightmares were at age seven after seeing the extremely frightening 1931 classic Frankenstein with Boris Karloff. As my eightieth birthday grew near, I began having similar nightmares about Dr. Alzheimer. I was in a dark room with shrouded figures reminiscent of the Black Death, where Dr. Alzheimer examined my brain, confirming I was one of his “chosen.” I would wake up in a panic, feeling paralyzed, trapped, unable to escape, sensing my life draining away. It was, of course, very disturbing, but I was otherwise normal, and too embarrassed to tell anyone.
Quite unexpectedly, I was thrown into close proximity with actress Tilda Swinton. After a while, I decided to confide in her. Now I am not blaming or crediting her for what came next. But soon after I became possessed with a compulsion to make a documentary investigating what had happened since my CNN report. Why didn’t we have a cure? When would it come?
Tilda enthusiastically agreed to be a consulting producer.
I began dashing off emails to the world’s most prominent Alzheimer’s researchers. To my astonishment, all but one eagerly agreed to talk. The first was Harvard superstar Reisa Sperling who responded at 7 am one morning within 15 minutes. That led eventually to on-camera conversations with over 60 leading Alzheimer’s authorities worldwide. I was dazzled by their intelligence, dedication, courage, openness, and good humor. And I piled up about 70 hours of footage. Then I stalled.
I was drowning in a mass of the latest neuroscience on Alzheimer’s and dementia with no real point or vision to shape a 90-minute documentary. I felt I was somehow missing what it was really all about.
Then I had a middle of the night revelation, waking up, thinking: “OMG, Alzheimer’s is a Ghost Story.” It’s not just a medical problem, or a conventional scientific quest for a cure. Its true essence is a science fiction horror disaster movie. Think about it: The disease is predicted to become an apocalypse by mid century. Nobody knows its cause. It originated in an insane asylum in Germany 100 years ago. It survives on an irrational fear of mysterious forces that attack and slowly shrink our brains, turning us into victims who resemble that repulsive half-dead half-alive creature, the zombie --created by the dark imaginations of horror filmmakers in the 1930’s and indelibly embedded in the public consciousness by Night of the Living Dead.
Our reactions to Alzheimer’s are the same as toward supernatural forces. We feel hopeless and helpless to stop it. We gaze into the cosmos of Big Pharma fantasizing about a magic pill to end our human misery.
At last I saw it clearly: Alzheimer’s is A Monster in the Mind with all the trappings of a science fiction horror disaster film.
I had to check it out with Tilda. I flew to Detroit where she was shooting "Only Lovers Left Alive," a vampire film, with director Jim Jarmusch. I showed her my bizarre opening—a rewrite of the famous introduction to the 1931 Frankenstein. She thought it perfect. Why was I not surprised?
From then on, the curse was lifted; the pace picked up. I found talented editors, cinematographers and producers to help realize my vision. I have always loved satire as a form of enlightenment. I also was freed to inject more of myself into the documentary—undergoing high-tech testing and getting the world’s top Alzheimer’s researchers to say the most astounding things.
The departure from a conventional “scientific” documentary caused some of my supporters to back away.
Tilda told me not to worry—to do it my way. I did.
With the support of my long-time friend Thea Flaum, creator of the Siskel-Ebert TV series, I got a showing at Kartemquin Films Lab in Chicago, and went on to preview showings with rave reviews and a common comment: “I never thought I’d be so happy and relieved after seeing a movie about Alzheimer’s.”