Robin Williams’ wife, Susan Schneider Williams, recently wrote a powerful and heartbreaking essay about the actor’s months of struggle with Lewy Body Disease (LBD), a neurological condition that later on led to his suicide in 2014.
In the essay entitled “The Terrorist Inside My Husband’s Brain,” Susan opened up about her husband’s difficult battle with the said disease, which they never found out he had until it was too late – when Robin had already taken his life.
According to Susan, Robin showed a variety of symptoms that did not fit one diagnosis, among which were periods of total and blank confusion, insomnia, heartburn and urinary difficulties, among others.
“Robin was losing his mind and he was aware of it,” Susan wrote. “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?”
Susan said Robin had undergone countless urine and blood tests as well as check-ups for possible tumors and problems in this lymph nodes and cardiovascular system. The tests came back negative for any abnormalities, except for spikes in her husband’s cortisol levels.
“He kept saying, ‘I just want to reboot my brain’,” Susan recalled.
On May 28, 2013, Robin was diagnosed with Parkinson’s Disease. However, this diagnosis did not seem to satisfy the actor.
“When we were in the neurologist’s office learning exactly what this meant, Robin had a chance to ask some burning questions,” Susan wrote. “He asked, ‘Do I have Alzheimer’s? Dementia? Am I schizophrenic?’”
“The answers were the best we could have gotten: No, no, and no. There were no indications of these other diseases. It is apparent to me now that he was most likely keeping the depth of his symptoms to himself,” she wrote.
Then came Robin’s lowest point, while he was filming “The Night At The Museum 3” in Vancouver when he couldn’t remember one single line from his scenes.
“This loss of memory and inability to control his anxiety was devastating to him,” Susan wrote. “In early May, the movie wrapped and he came home from Vancouver—like a 747 airplane coming in with no landing gear.”
There were also days when 1 minute, Robin would be as brilliant as he usually was and next, he would be lost in confusion, unable to move.
In August, Robin’s delusional looping seemed to be calming down after he switched to a new set of medications.
“We did all the things we love on Saturday day and into the evening, it was perfect—like one long date. By the end of Sunday, I was feeling that he was getting better,” Susan wrote. “When we retired for sleep, in our customary way, my husband said to me, ‘Goodnight, my love,’ and waited for my familiar reply: ‘Goodnight, my love.’”
On August 11, Robin committed suicide, leaving his family and the whole world devastated.
Three months after his death, Susan found out that Robin had one of the worst LBD pathologies that 4 experts have ever seen.
“Throughout the course of Robin’s battle, he had experienced nearly all of the 40-plus symptoms of LBD, except for one. He never said he had hallucinations,” Susan wrote. “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 ended the essay by thanking the doctors who are continually studying the disease with the hope that Robin’s story will inspire them to “turn Robin’s suffering into something meaningful.”