Downfall of the school librarian of the year
The path that took Deven Black to his gritty death in a rundown homeless shelter was as baffling as it was tragic.
This was a suburban dad, a nationally recognized school librarian. In just three years, he had become destitute.
He had derailed his career with an inappropriate encounter with a female student, had blown up his marriage by giving thousands of dollars to paramours online and had gotten involved in a bank fraud scheme for their sake.
Doctors diagnosed depression. Relatives and friends tried to help, confronting and struggling to get through to him, mystified by his behavior and questioning whether depression fully explained it.
A year after his death at 62, renowned brain experts have confirmed that more than depression was at work.
They recently presented his case as “the mayhem of a misdiagnosis “of a rare disorder. His es- tranged wife had suspected it, but his doctors hadn’t pushed to test him, and at least one had concluded he didn’t have it.
“I’m just so angry that this happened to him,” says his sister, Loren Black.
“And I really wish that we could have figured out how to protect him.”
“He got sick, but Deven was a good person.”
What was Black’s problem? Was it internet addiction? Psychopathic personality disorder? Nothing seemed to fit.
“I was wrestling with growing suspicions that there was something significantly, organically wrong with him,” his wife says.
Unusual disorder
A matter-of-fact Minnesotan who works at a medical-education company, she’s careful about jumping to conclusions. But she kept thinking about an unusual disorder she’d heard about through her job. And as she started reading up, her suspicions mushroomed.
The disease, frontotemporal dementia, often emerges in patients’ 50s or 60s and can scramble their personality and behavior while leaving memory intact, at least for a time.
“Behavioral variant” FTD patients can become uncharacteristically impulsive, behaving inappropriately and making bad financial or other decisions without seeming to grasp the impact.
While the disorder’s causes aren’t completely understood, some patients’ families carry a genetic mutation linked to both FTD and amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Black’s late mother and brother both had it.
On Jan. 27, 2016, a security guard found Black bleeding on the floor, his throat slashed, in his room in an East Harlem shelter for men with mental health problems.
His volatile, 21-year-old roommate, Anthony White, fled when the guard opened the room’s door, police said. White’s family said he wasn’t a killer, but he never answered the allegations himself. His decomposed body was found in the Hudson two months later.
The day after Black’s death, his wife called Dr. Brad Dickerson, a professional acquaintance who runs Massachusetts General Hospital’s FTD Unit.
He quickly agreed to explore Black’s case.
Confirmation came in an image of chemically stained, microscopic brown specks that marked deposits of a protein linked to FTD and ALS on a bit of Black’s brain.
It’s not unusual for FTD to go undetected, at least in early stages. The disease affects only an estimated 50,000 to 100,000 or so people nationwide, compared with a likely 5 million with Alzheimer’s disease.