A little more than two years after her husband — the legendary comedian and actor Robin Williams — took his own life, Susan Schneider has opened up about the shock she received in the months following his untimely death. Three months after Williams died, the medical examiner released the official coroner’s report and it contained something unexpected, she wrote in an essay titled “The terrorist inside my husband’s brain” for the medical journal Neurology. Williams, unbeknownst to anyone, including himself, had been suffering from a neurologic condition called Lewy Body Disease, or LBD. “All four of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen,” she revealed in the essay. “He had about 40 percent loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.” Of course, Williams had also been diagnosed with Parkinson’s Disease in the months leading up to his suicide.
In retrospect, Schneider wrote that she now understands the problems he faced, beginning in the fall of 2013 — which seemingly had no explanation, despite consultations with doctors and experts — were actually symptoms of LBD. “By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels — just to name a few — were settling in hard,” Schneider wrote. “Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.” In trying to help him, one of his doctors, also unaware of Williams’ LBD, gave him a prescription that ended up worsening the symptoms.
“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,” she reflected.
“Not only did I lose my husband to LBD, I lost my best friend,” Schneider lamented in the essay. “Robin and I had in each other a safe harbor of unconditional love that we had both always longed for. For seven years together, we got to tell each other our greatest hopes and fears without any judgment, just safety. As we said often to one another, we were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence.”
Schneider goes on in the piece to discuss the increasing difficulties Williams faced and how it affected him while on movie sets, and she talked candidly about their favorite past-time, a ritual they made sure to do together daily — no matter if he was away on location, or if they were together at home at the end of the day.
Read the complete essay at Neurology.