The widow of Robin Williams has written a detailed account of the brave struggle with an undiagnosed brain disease called Lewy Body Dementia that preceded the comedian’s suicide in 2014.
Headlined “The terrorist inside my husband’s brain,” Susan Schneider Williams’s essay in Neurology reports that “the massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters that in effect, you could say he had chemical warfare in his brain.”
Susan Schneider Williams used the platform of a medical journal to specifically address her words to medical researchers, saying she hoped the “personal story, sadly tragic and heartbreaking,” would further inspire them to persevere in the quest for a cure. Given the initial media frenzy that dwelled on the actor’s past struggles with depression and substance abuse, the essay also helps expose the harm of stigmatizing suicide through simplistic stereotyping.
Listen to a podcast with Susan Schneider Williams here.
Excerpts from her essay:
My husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease’s symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now. …
Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem. …
Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD. …
I will never know the true depth of his suffering, nor just how hard he was fighting. But from where I stood, I saw the bravest man in the world playing the hardest role of his life. …
Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back. He kept saying, “I just want to reboot my brain.”…
After months and months, I was finally able to be specific about Robin’s disease. Clinically he had PD [Parkinson’s Disease], but pathologically he had diffuse LBD. The predominant symptoms Robin had were not physical—the pathology more than backed that up. However you look at it—the presence of Lewy bodies took his life. …
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