Two years after the August 11, 2014 death of her husband, beloved comedy legend Robin Williams, Susan Schneider Williams has penned an essay in the prestigious medical journal Neurology, describing the painful final year of his life. Titled “The Terrorist Inside My Husband’s Brain,” the essay describes in detail the steady accumulation of symptoms—anxiety, memory loss, delusions, paralysis, and more—that accompanied Williams’ onset of Lewy body disease. (Originally diagnosed as Parkinson’s in 2013.)
Williams describes, in depth, the toll the disease took on her husband, and the ways it made it impossible for him to control his anxiety and irrational fears. “Once the coroner’s report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala. This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.”
Williams also recounts an incident where her husband was unable to remember a single line during the filming of the third Night At The Museum film, one of his final on-screen roles. “While just three years prior,” she writes, “He had played in a full 5-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines—and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.”
The pair had been married for just a year when concerns over the symptoms began to build. “At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it,” she writes. “He kept saying, ‘I just want to reboot my brain.’”
Williams—who now serves on the Board of Directors for the American Brain Foundation, after spending the last several years researching the disease that led her husband to take his life—finished her essay by addressing the neuroscientists who might be reading, thanking them for their work in trying to understand the currently incurable disease. “If only Robin could have met you,” she finishes. “He would have loved you—not just because he was a genius and enjoyed science and discovery, but because he would have found a lot of material within your work to use in entertaining his audiences.”