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Robin Williams’ Lasting Legacy

by MARA FREEDMAN

It’s been six years since Robin Williams’ death shocked the world. Now, in a new documentary, Robin’s Wish, his wife, Susan Schneider Williams, searches for more answers about the disease that defined the final months of Williams’ life. His posthumous diagnosis of Lewy Body Dementia revealed the actor struggled from  the second most common type of progressive dementia after Alzheimer’s. We spoke with the film’s director, Tylor Norwood, on how this film can help educate others, and how Robin Williams legacy is about more than just comedy.

1. While most have heard about Alzheimer's Disease, many haven’t heard about Lewy Body Dementia, despite its being the second most common type of progressive dementia. Why did you want to make this film and what did you learn about the disease while making it?

Tylor Norwood: It was only after Susan Schneider Williams (Robin Williams’ widow) came to me and asked me if I would make a film about Lewy Body Dementia and told me that it was something that had deeply affected her and her husband, that I decided to make the film. It was after hearing the stories that she and Robin had experienced with the disease in the last year and a half of his life and when she said that she would be willing to share those stories on camera, that I knew we had a special story to tell. It took nearly 4 years to compile this film from that point on.

The amount I learned about neurology, neuroscience and Lewy Body Dementia specifically shaped my opinion that Robin clearly was a victim of Lewy Body Dementia and that it was the thing that ended his life. As a fan, that knowledge dramatically changed my perspective and feeling about the way that Robin Williams passed. It’s important to know that Robin wasn’t special. 1.4 million people are diagnosed with Lewy Body Dementia every year. It’s an incurable deadly neurological disease.

2. How will understanding more about Lewy Body Dementia help us to better understand Robin Williams? How can we build better awareness about the disease?

Tylor Norwood: For those who believe that Robin Williams left this earth because he was depressed or that he was some version of a sad clown, knowing that he had Lewy Body Dementia completely changes any misconception or preconception that that was the case. In knowing that he suffered from this disease, we can clearly understand the real human that made all the work that we loved so much. And we can use his story to educate others and hopefully, unlike Robin, who was never diagnosed with a disease during his lifetime, more people will have access to better treatment and ultimately more diagnoses will be made. Millions of dollars have already been raised in his name towards finding a biomarker, which would allow us to treat this disease and perhaps even stop the progression of the disease. So much work is still left to do. So many more people will know that as they embark on that work that they’ll be doing it in his name, and I think that’ll bring an incredible amount of energy to the projects.

3. Robin Williams was known for so many fun-loving and outgoing characters — Mrs. Doubtfire, the Genie, Mork — but clearly struggled privately with personal challenges. How can the public's understanding of these internal struggles allow us to better address and tackle mental health issues?

Tylor Norwood: The thing that made Robin Williams special was his mind and his ability to get wherever he was going faster than the rest of us. But for me, all of that was just a vehicle for his heart. It was a way for him to transmit to us the beauty of his character and his humanity. It’s how he faced his greatest challenge, this incurable neurological disease, that we can truly understand who he was as a man. In looking at the facts of that matter, he shines as a person driven by his heart, who never got angry, never got bitter, always stayed the person that we always hoped he was. So, what I learned in the making of this film and understanding his Lewy Body Dementia is that Robin Williams “the man” was better than Robin Williams “the actor” or “the comedian” or “the performer.” The guy behind all the work was more generous, more kind, and more empathetic than I ever imagined.

4. In making this film, you are paving the way to create a new legacy for Robin Williams's life, not just in comedy and film, but also in mental health. Why was that important? What are you hoping the audience takes away from learning more about Robin’s life?

Tylor Norwood: Robin Williams stood for so much in his life. He did so much good for so many and in so many ways. The idea that this film will highlight one more way for him and his story to do good in the world is something I think we can all be very proud of. It’s in his resilience and his ability to give when it’s hardest to give. I think we can take a great lesson from him as we look towards understanding this disease better and to bringing kindness and compassion to the people who suffer with it.  It’s in bringing that empathy that Robin brought so well to the world that we can all be a part of his legacy and do more to remember him well.


This essay was featured in the September 13 edition of The Sunday Paper. The Sunday Paper Inspires Hearts and Minds with News and Views that Rise Above the Noise. To get The Sunday Paper delivered to your inbox each Sunday morning for free, click here to subscribe.

MARA FREEDMAN

Mara Freedman runs a social media agency, Storyd Media, and is proud to be a part of The Sunday Paper.

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