ANpost Robin Williams died in August 2014, at age 63, many people had a lot to say about him. There was predictable speculation about why an extremely loved and apparently healthy Hollywood star would end his own life, with some confidently claiming he was depressed or succumbed to old addictions.
Others spoke, with more evidence, about Williams as a comic genius (Mork & Mindy, Mrs. Doubtfire, The Birdcage, Aladdin); a brilliant dramatic actor (Dead Poets Society, Awakenings, Good Will Hunting, One Hour Photo); and both (Good morning, Vietnam; The Fisher King). One thing everyone agreed on was that he had an extraordinary mind. The comedians talked about how no one thought faster on stage than Williams; those who made films with him said that he never took the same shot twice, always improvising and getting more and more fun.
Williams knew that about himself. In HBO’s 2018 Marina Zenovich documentary about Williams, Come Inside My Mind, we heard an old interview in which he is asked if he is afraid. Williams replies: “I think I fear that my conscience will become not only dull, but a rock. I couldn’t light it. It was only after he died that doctors were able to see that Williams ’worst fears had come true: the autopsy suggested that he had suffered from severe dementia with Lewy bodies (DCL), more commonly referred to in the UK as dementia with Lewy bodies.
Speaking to me from his home in Marin County, California, Williams ‘widow, Susan Schneider Williams, told me: “The doctors told me after the autopsy:’ Are you surprised that your husband had Lewy bodies all over his brain and brain stem? ? ‘I didn’t even know what Lewy’s bodies were, but I said,’ No, I’m not surprised. ‘ The fact that something has infiltrated every part of my husband’s brain? It made perfect sense. “
Lewy bodies are abnormal clusters of proteins that accumulate in brain cells and are responsible for 10% to 15% of dementia cases. People with LBD tend to experience, among other things, anxiety, memory loss, hallucinations and insomnia, and these symptoms are usually accompanied or followed by Parkinson’s symptoms. Since obtaining the diagnosis, Schneider Williams has made it his mission to correct erroneous assumptions about her husband’s death, educate others about this still relatively unknown brain disease, and find out what her husband endured while he was – unbeknownst to any of them – suffering of LBD.
Thus, questions about Williams, the celebrity, are received by her with barely suppressed frustration (“Could it be that I was a fan his? Um, I’m not really a fan of anyone ”), but when I ask about the crossings between LBD and Parkinson’s, she literally jumps in her chair of excitement:“ OK, that’s a great question! ”She says, starting a detailed explanation of the relationship between Parkinson’s, LBD and Alzheimer’s, and how LBD can often be misdiagnosed as one of the others. When she came up with the idea of making a film about LBD, she released it as a direct scientific film (“the director laughed”). So she gave in and made Robin’s Wish, a very moving documentary about her husband’s experience with the disease. “If my husband was not famous, I would not have gone through this. But there were so many misunderstandings out there about what had happened to him and about Lewy’s bodies. So it seemed like the right thing to do, ”she says.
Schneider Williams is not a neurologist or filmmaker, but an artist and, as if to prove his good faith, behind it is a canvas and an easel, all assembled. “Robin and I loved to go to museums together. He was a big fan of history, so he brought history and I brought the art side and we doubled our fun. People tend to assume that the guy he was on stage with was the guy he was at home with, and let me make it very clear: I would never marry someone like that, ”she says emphatically.
So he wasn’t messing around in different voices while making soup for lunch?
“Definitely not. The man at home, my husband, was quiet, contemplative, an intellectual. Standup and acting, that was his job.”
Schneider Williams met Williams in late 2007, when she happened to stop at the local Apple store. “I went in and saw this man and I thought, ‘I think it’s Robin Williams.’ Then, on my way, I looked at him again and he was smiling at me and something inside me said, ‘Oh, just pass by and say hi.’ He was wearing camouflage prints, so I said, ‘How is this camouflage working for you?’ And he said, ‘Not very well – you found me.’ ”Four years later they were married, his third and her second, and lived in Marin County, with their two children from a previous relationship. Just two years later, the symptoms started.
Williams initially complained of stomach pains. Then his hand started to shake and he had a terrible insomnia. Even more remarkable for Schneider Williams was his growing anxiety. “It was very strange for Robin to be so paranoid. And that was the beginning of this 10-month beat of growing symptoms, and the problem with LBD is that the symptoms don’t show up at once – they change. So they are incredibly confused for the patient and the caregiver, ”she says.
Some of the most moving parts of Robin’s Wish are the interviews with people Williams worked with in the end. David E Kelly, who created the sitcom The Crazy Ones, in which Williams acted, describes him having to hide his trembling hand in his pocket. Shawn Levy, the director of the Night at the Museum franchise, remembers Williams saying to him, “I’m not me anymore,” adding, “Your brain wasn’t racing at the same speed, the joy wasn’t there.”
In early May 2014, Robin was diagnosed with Parkinson’s and started telling his children (he has a son, Zak, from his first marriage, and a daughter, Zelda, and his son, Cody, from the second). But Parkinson’s disease didn’t really explain paranoia, delusional looping, mild depression and anxiety, many of which, says Schneider Williams, were being treated as “satellite problems” as opposed to part of an interconnected neurological problem. Williams’ behavior was getting so extreme that he and his wife made the decision to go to a neurocognitive testing center. A week before his departure, Williams killed himself. “I don’t think he wanted to go. I think he thought, ‘I’m going to be stuck and never leave,’ ”said Schneider in a choked voice.
After Williams died, it was widely reported that he suffered from depression, alcoholism or both. For Schneider, this shows “how we, as a culture, do not have the vocabulary to discuss brain diseases in the same way as we do about depression. Depression is a symptom of LBD and has nothing to do with psychology – it has roots in neurology. His brain was collapsing. Williams has struggled with addictions in the past, but Schneider Williams says that was not the problem this time.
He had been briefly admitted to a rehabilitation center in 2014, but that was, she says, “to take time out, do some meditation, go deeper into the work of recovery. Robin had been clean and sober for six years when he passed away. ”(In Dave Itzkoff’s 2018 Williams biography, a friend Wendy Asher confirms that addiction was not the problem:” It wasn’t that. It was a medical problem. Susan thought everything would be fixed through AA, and simply it wasn’t true. ”) Schneider Williams continues:“ I was furious when the media said he had been drinking, because I know there are recovering addicts out there who admired him, people dealing with depression who admired him, and they deserve to know the truth. “
Since his discovery as the gentle alien in Mork & Mindy, Williams has awakened a warmth in the audience that approached love. The news of his passing caused a shiver of global pain that went far beyond the usual reaction to the death of a celebrity. In part it came from the shock. But it was mostly about Williams. While other highly successful comedians tend to seem irritating, unbalanced, or both, Williams has always had an extremely endearing sweetness – a vulnerability, but associated with such intelligence and self-awareness that it seemed wise and strangely identifiable. His epigrams about addiction (“Cocaine is God’s way of saying you have a lot of money”) and depression (“Remember that suicide is a permanent solution to a temporary problem”) are so loved that they have become adages.
Julie Kavner, better known now as the voice of Marge Simpson, worked with Williams on the films Awakenings and Deconstructed Harry. “I swear to God, walking on the street with Robin was like walking with Mother Teresa, the way people reacted to him,” she tells me. “I remember one time we were walking around the East Village in New York while filming Deconstructing Harry and nobody asked him for a photo or autograph. They just came over to him, really calm, and all they wanted to do was give him a high five, or touch him. His spirit was out there, and people wanted to thank him. I’m about to cry just thinking about it. “
Gus Van Sant, who directed Williams on Good Will Hunting, had the same experience with him: “People were very happy to see him. They said, ‘Oh, it’s you!’ and hug him without even asking. I never saw that with any other famous person I worked with. Sean Connery [who Van Sant directed in Finding Forrester] it would have been like, ‘Dear God, have some decency!’ But Robin would hug them back. He had that soft side and was receptive to people and things around him. I remember going to an art gallery with him once and he would really absorb the ideas in the art pieces. He would say, ‘Oh, look at this! This is it!’ He was like a kid in a candy store. Van Sant echoes Schneider Williams in describing Williams as “very serious”, but adds: “Although he regularly engaged in comedy routines, just to make the cast and crew laugh.”
“When we were doing Awakenings, we were filming in the desert part of a mental hospital, and often filming at night,” says Kavner. “And there was this TV in the corner in the mute, and Robin, between the scenes, made a riff, inventing dialogues on the TV show, amusing everyone at 3 am, anytime. It was a very difficult role for which he did phenomenal research, but he didn’t keep it to himself between takes – he was out there, giving it to everyone. “
After he died, doctors were shocked by the extent to which Lewy’s bodies accumulated in Williams’s brain, with one describing him as one of the worst cases he had ever seen. Schneider Williams is sure that the LBD led to her husband’s suicide; Dementia professionals I spoke with, while sympathetic to Schneider Williams, say it is impossible to make a direct connection between the two. “LBD can be a devastating diagnosis, but if people get the right support and treatment, then they can have a good quality of life for several years,” said Rachel Thompson, of the Dementia UK and Lewy Body Society. Unfortunately, Williams was never diagnosed, so he never received treatment, and for reasons he couldn’t understand, he found himself unable to give everything he wanted to the people around him.
“But Robin still tends to show up when I need him. About an hour before this interview, I saw him in the yard, ”says Schneider Williams. “But when he’s not there, I think of my friend, my love, and I miss him.”
• Robin’s Wish is released digitally and on demand in the UK on January 4
• In the UK and Ireland, Samaritans can be reached by calling 116 123 or by email [email protected] or [email protected]. In the USA, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the Lifeline crisis support service is 13 11 14. Other international help lines can be found at www.befrienders.org.