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Zak Williams, son of the late Robin Williams, remembers his father using his story to shed light on the stigma surrounding mental health.
In a candid interview with Max Lugavere on his podcast The life of genius, Williams spoke about his father’s misdiagnosis, watching him battle depression and anxiety, how the experience led him to be diagnosed with PTSD, and how he now uses his advocacy to heal others. .
“It’s a unique form of suffering in the family context,” Williams said of Lewy Body Dementia (DLB), which Robin suffered in the last two years of his life.
DCL, as defined by the Alzheimer Society, is a type of dementia that shares the symptoms of Alzheimer’s disease and Parkinson’s disease, and can account for 10 to 15% of all cases of dementia.
How a person is affected by DCL depends on where the Lewy bodies are in the brain, but most people with the disease have problems with movement and changes in mental capacity at the same time. , according to the Alzheimer Society.
“We’ve talked a few times a week, but we’ve gotten to the point where we’re talking every day,” Williams said. “I wanted to be there for him on a daily basis. I really wanted him because [DLB] can be really isolating even if you are with your family and loved ones.
Two years before Robins committed suicide in 2014, he was mistakenly diagnosed with Parkinson’s disease. However, although her direct cause of death was asphyxiation from hanging, an examination of her brain problem suggested her true diagnosis was MCI.
Williams, who suggests her father’s misdiagnosis “could have made it worse,” adds that the drugs to treat Parkinson’s disease are “no joke. They’re doing this to you.”
“The diagnosis was different from the disease, so I think it could be a situation where you take things and only feel the side effects of [the drug]”, he explained. Still,” there is a range of effectiveness, but what I have found is that they are also very hard on the mind and body, so that was hard to see. “
The illness had a profound impact on Robin’s comedic timing, or his “lightning-fast recall,” which was his signature. “It’s part of being great at improvising. [But] all of the symptoms… presented in one way or another, ”Williams said.
“When he committed suicide, the [DLB] had progressed, but he had only really been there for two years, “Williams admitted.” I don’t mean it was a short time – it seemed a lot longer than it actually was – but it was a period of intense research and frustration for him. From my goal it was so sad for me because I loved him so much as a father but also he was one of my best friends and we spent so much time together.
“For him to open up to me and share his experience, it’s scary, you know, and I have a lot of empathy for family members who are going through a similar or the same experience because it’s fair. devastating.”
After Robin’s death, Williams said he ended up self-medicating using alcohol as a means to “manage my mental health” to the point of creating “problems very harmful to me personally”, including some. levels of psychosis.
“When I spoke with a psychiatrist, I was diagnosed with PTSD,” said Williams, who has now been sober for four years.
With the support of family and friends, Williams ended up getting into mental health advocacy, working with organizations like Bring Change to Mind, which focuses on building high school mental health communities. of the United States and the launch of anti-stigma campaigns.
He found the experience “extremely healing”.
According to the American Foundation for Suicide Prevention, men are nearly four times more likely to kill themselves than women. Williams argues, in large part, that these numbers are due to the lack of opportunities for men to speak openly about mental health issues.
“This is closely related to the stigma, availability and openness to further treatment,” he said. “I think a lot [men] feel isolated; many do not have the necessary employment opportunities. “
Further, argues Williams, the language around suicide must change to help achieve this goal.
“I think it’s a matter of agency. The cause of death, of ‘dying by suicide’, it frames things very differently from ‘he committed suicide’,” he explained. “It gives the opportunity to give more space to the individual who is dying because the whole premise of suicide suggests that there were different motives, there were all kinds of underlying things at play, and when we use the term “death by suicide”, it gives space to see it as more symptomatic – among other things. “
These days, Williams not only uses his platform to help mental health organizations, but he’s also become an entrepreneur, having founded PYM, a mental wellness company selling acid-infused chews. all-natural amines, especially the neurotransmitter gamma-aminobutyric (GABA), which has been shown to help with anxiety.
While he’s certainly been through a lot in recent years, Williams said that since his father’s death he’s seen huge investments in new research around DLB, which is encouraging.
“In relation to Lewis’ body dementia, there have been resources that have been released and new sources of funding because of what has come to light.”
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