A few weeks ago during a medical writing seminar I teach, Dr. Gerald Friedland, an infectious disease expert, spoke with my undergraduates about caring for AIDS patients in the earliest days of the epidemic.
One of my students asked him this: When there were no treatments, what was there for a doctor to do?
"There's always something you can do for people," Dr. Friedland said in his soft-spoken way. He proceeded to explain how he would pull up a chair by the bedside so he and his patients were talking on the same level rather than he literally talking down to them; how he would help families cope with the poor prognosis; how he told the truth even when it wasn't easy.
Doctors rarely cure diseases, he added. For the most part, they manage them. He told my students that being a good physician means helping patients navigate illness.
The essence of Dr. Friedland's words reverberated with me when I got home that night and watched the preview of a new documentary to be released March 10 about a woman with frontal lobe dementia, a fatal brain disease.
Frontal lobe dementia is a catch-all term given to a broad category of illnesses that destroy the part of the brain -- the frontal lobe -- between the ears and behind the eyes. The frontal lobe helps us make decisions, helps us understand the ramifications of our actions, helps us emote, helps us speak. The frontal lobe makes us us.
The illness emerges insidiously, as it did with Laury Sacks, the main character in the documentary aptly titled, Looks like Laury, Sounds like Laury."
Pre-disease, Laury had been a witty, fast-talking, exuberant writer-actress-mother-wife. She lived about 10 blocks from me on the upper west side of Manhattan, though I didn't know her.
The disease began mysteriously when she was 46 and seemed more aloof than ever before. Her friends thought she was intentionally distancing herself; a few wondered if she suffered from depression.
"It was like a light bulb went off and we all went, 'where did she go?," one of her friends said, "She's like an artists rendering of Laury; looks like Laury, sounds like Laury, but where's Laury?"
But then Laury started having trouble speaking. It was as if her words were trapped in her head. She seemed to hear though no one knew how much she really understood.
For a woman whose life was about performing and writing, not being able to do just that signaled danger. A neurological exam assessing her cognitive abilities revealed the diagnosis. There is no blood test for frontal lobe dementia. Sometimes an MRI shows brain atrophy. Symptoms vary depending on which part of the brain is attacked. Some patients lose the ability to speak. Others lose inhibition, behaving inappropriately in public. Some can't stop eating -- which doctors think is more about compulsive behavior than hunger. There is no cure. Most people die within 10 years of diagnoses.
When Laury was still alert enough to understand what was happening to her, she asked her friends to film her story. The movie includes a few old clips of Laury pre-disease, laughing with her husband on the beach, carousing with friends. She was silly and smart and someone who enjoyed the spotlight, on and off stage. And then we witness Laury losing her Lauryness.
Laury was diagnosed at 46 and died six years later. And yet this documentary produced by Pamela Hogan (who also directed it) and Connie Shulman (Yoga Jones from Orange is the New Black, the hit Netflix series) is more than a careful portrayal of the ravages of one disease. It allows us to peer into the lives of a tightly bound community and see how family and friends depended on each other during trying times when modern medicine offers no quick fixes. It's the stuff that Dr. Friedland was talking about with his AIDS patients, a very different disease in many ways (one is infectious and epidemic; the other is perhaps genetic and rare), yet similar in some sense on the impact on caregivers.
Eric, Laury's husband, cared for someone very different from the woman he married. In the film, we watch their 8-year-old daughter Talley cuddled by friends and relatives. You wonder how much she really comprehended the situation, when all of the grown ups around her were equally mystified.
Perhaps the most poignant scene is when one second grade girl with a pixie haircut looks straight into the camera and says:
I'm Gus and sort of like Talley's best friend....When I first met Laury, I didn't know what was wrong with her. I just thought she was quiet...she's different from many other moms cause you know she has that. Talley is different from other friends because of that. Everybody keeps asking it to Talley like what's up with your mom and I try to push it out of the way, the subject, so she wouldn't have to talk about it cause that's all we can do, really all we can do really, cause I can't help her mom. The only thing I can say is I'll try to be really nice to you. I'll have lots of play dates with you. I'll even have sleepovers. I'll help you and that's all we can do.
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