Before he killed himself in 2014, Susan Schneider Williams watched her husband suffer from undiagnosed Lewy’s body dementia. Her latest film intends to teach people about the illness and to refute myths about his passing.
Many people had a lot to tell about him after Robin Williams died at the age of 63 in August 2014. The speculation was predictable as to why a widely admired and apparently safe Hollywood star would end his own life, with some confidently suggesting that he was depressed or had succumbed to old addictions. Others spoke of Williams as a comedic genius with more facts (Mork & Mindy, Mrs Doubtfire, The Birdcage, Aladdin); a talented dramatic actor (Dead Poets Society, Awakenings, Good Will Hunting, One Hour Photo); and both (Good Morning, Vietnam; The Fisher King). All decided on one thing was that he had an exceptional mind.
Comedians spoke about how no one thought faster on stage than Williams; those who made films with him said he never took the same thing twice, always ad-libbing and becoming funnier every time. Robin Williams remembered:’ A remarkable actor, a brutal shocker.’
We listen to an old interview in Marina Zenovich’s 2018 HBO documentary about Williams, Come Within My Head, in which he is asked if he has any fears. Williams answers, “I guess I’m afraid of my consciousness becoming a stone, not just a dull one.”
It was not until after his death that physicians were able to establish that the worst suspicions of Williams had come true: the autopsy confirmed that he had suffered from extreme Lewy body dementia (LBD), more generally referred to in the United Kingdom. Like Lewy Bodies dementia. Susan Schneider Williams, the wife of the deceased, told me from her home in Marin County, California, “After the autopsy, the doctors told me, ‘Are you surprised that your husband had Lewy bodies in his brain and brain stem?’ I didn’t even know what Lewy bodies were, but I said, ‘No, I’m not surprised.’ The fact that every part of the brain of my husband was infiltrated by something? Lewy bodies are Lewy bodies.”
Schneider Williams has made it her goal since her diagnosis to correct myths about the death of her husband, inform people about this still relatively unknown brain condition, and find out what her husband suffered while suffering from LBD – unbeknownst to them. With barely concealed anger, she answers questions about the celebrity Williams (‘Was I a fan of his? “Um, I’m not really anybody’s fan”), but when I inquire about the overlap between LBD and Parkinson’s, she practically bounces with enthusiasm in her seat, “Okay, that’s a great question,” she says, and launches into a detailed description of the relationship between Parkinson’s, LBD, and Alzheimer’s, and how LBD can sometimes be misdiagnosed as one of the other diseases (“the director laughed”).
So she compromised and made Robin’s Wish, a very touching documentary about the experience of her husband with the disease. “I wouldn’t have done this to myself if my husband wasn’t famous.”
Yet there were so many myths about what had happened to Lewy and what had happened to him.
Schneider Williams is neither a neurologist nor a filmmaker, but an artist, and there is a canvas and an easel behind her, all set up, as if to show her good faith. Robin and I enjoyed going to museums together. He was a great history buff, so he brought the side of history and I brought the side of art, and we had twice as much fun. People seem to think that the guy he was on stage was the guy he was at home, and let me clarify: I’d never marry someone like that,”Robin and I loved going to museums together. He was a big history buff, so he brought the history side and I brought the art side, and we had twice as much fun. People tend to assume that the guy he was on stage was the guy he was at home, and let me clarify: I would never marry someone like that,” Definitely not. He was quiet, thoughtful, and intelligent, the man at home, my husband. In late 2007, when she happened to stop by the local Apple store, Schneider met Williams. “Definitely not. The man at home, my husband, he was quiet, thoughtful, an intellectual. Schneider met Williams in late 2007 when she happened to stop by the local Apple store. “