Robin's Wish: Who Robin Williams Really Was
On August 11th 2014, the world was shocked to find out that Robin Williams had died by suicide. For someone who brought so much humour to the world, it was a tragic, traumatic end. But no one knew how much more there was to the story.
Left to speculate on Robin's motives, the media circus spun out of control, leaving the public in the dark about a complicated and obscured truth.
Robin, bright, funny, quick witted, had lost a battle against an unknown enemy, the nearly impossible to diagnose brain disease – Lewy Body Dementia.
Filmmaker Tylor Norwood brings this story to the screen for the first time in his documentary Robin's Wish.
Robin Williams was larger than life, but Robin was a wonderful human being who was behind all that incredible work, and Robin was better than Robin Williams. - Tylor Norwood
Time Stamps:
03:00 - The film we are talking about today – Robin's Wish.
04:40 - Where the audience can see the film.
05:15 - The synopsis of the film.
07:59 - First clip: Shawn Levy on what Robin Williams was like on the set of Night at the Museum.
09:30 - How other people were seeing Robin Williams in the last year and a half of his life.
12:42 - Second clip: Shawn Levy on what he noticed shooting the third Night at the Museum.
14:38 - How Robin's symptoms impacted his behaviour and the people around him.
20:02 - Struggling with the stigma of having a mental illness.
23:09 - Third clip: Robin's wife and his friends talk about his struggle with his disease.
29:00 - What is Lewy Body Dementia.
33:45 - The organisations who supported the making of Robin's Wish.
41:00 - What Robin's real wish was.
45:50 - Robin's humanitarian tours around the world.
50:24 - How Tylor chose who would participate in the film and talk about Robin Williams.
53:10 - How difficult it was for Robin's wife to open up about his last years.
57:07 - What projects Tylor Norwood is working on next.
Resources:
Robin's Wish (2020)
Lewy Body Dementia Fund of the American Brain Foundation
Savonix BU School of Public Health
Night at the Museum (2006)
Robin Williams: Come Inside My Mind (2018)
Alamo Pictures
Connect with Tylor Norwood:
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Transcript for Factual America Episode 36 - Robin's Wish: Who Robin Williams Really Was
Tylor Norwood 0:00
My name is Tylor Norwood. I'm the director of Robin's Wish and I am happy to be on the show today.
Speaker 1 0:04
Ladies and gentlemen, Robin Williams!
Speaker 2 0:08
What's your brain doing when 10,000 people are laughing their heads off?
Robin Williams 0:11
(I am not a tuna.) The human brain is you know, an extraordinary three and a half pound gland. The moment you think you understand it, it comes out with something else.
Speaker 3 0:21
The breaking news: actor Robin Williams is dead at the age of 63.
Speaker 4 0:26
They believe that the Bay Area resident committed suicide.
Speaker 5 0:30
There was a lot of media speculation
Speaker 6 0:34
on Robin Williams mind before his death, money,
Speaker 7 0:38
He's broke or he is depressed or he's just given up.
Speaker 8 0:41
The last movie, it was clear to all of us on that set that something was going on with Robin.
Speaker 9 0:46
There was something eroding within him.
Tylor Norwood 0:48
I was called in to go into the coroner's report. It was the beginning of understanding what had been really going on. My husband had unknowingly been battling a deadly disease.
Speaker 2 1:01
Lewy body dementia is devastating illness. Increases anxiety, self-doubt, causes delusions that have never been present in someone.
Tylor Norwood 1:12
Nearly every region of his brain was under attack. He experienced himself disintegrating.
Speaker 2 1:16
I remember him saying to me, I don't know what's going on. I'm not me anymore.
Speaker 3 1:22
It really amazed me that Robin could walk or move at all.
Speaker 2 1:26
People who are incredibly brilliant can tolerate degenerative diseases better. Robin Williams was a genius.
Unknown Speaker 1:35
He was always able to power through it. And he'd become this guy that you knew, remembered and loved.
Tylor Norwood 1:43
The way that he was able to battle the inner turmoils, he was a freakin warrior.
Speaker 1 1:49
It no longer feels loyal to be silent about it but maybe more loyal to share.
Tylor Norwood 1:55
He was blessed with what his heart was capable of. In the midst of fear. He wanted to help people be less afraid,
Speaker 10 2:05
Self goes away. Ego bye, bye. The thing that matters are others. That's what life is about.
Factual America midroll 2:19
That is the trailer for Robin's Wish. And this is Factual America. Factual America is produced by Alamo pictures, a production company specializing in documentaries, television, and shorts about the USA for an international audience. I'm your host, Matthew Sherwood, and every week we look at America through the lens of documentary filmmaking by interviewing filmmakers and experts on the American experience. Subscribe to our mailing list or follow us on Facebook, Instagram, and Twitter at Alamo pictures to be the first to hear about new productions, to find out where you can see our films and to connect with our team.
Matthew 3:01
On August 11, 2014, the world was shocked to find out that Robin Williams had died by suicide. For someone who brought so much humor to the world it was a tragic, traumatic end. But no one knew how much more there was to the story. Left to speculate on Robin's motives, the media circus spun out further and further, leaving the public in the dark about a complicated and obscured truth. Robin, bright, funny, quick witted, had lost a battle against an unknown enemy - the nearly impossible to diagnose brain disease, Lewy body dementia. Filmmaker Tylor Norwood brings this story to the screen for the first time in his documentary Robin's Wish. We caught up recently with Tylor from San Diego, California. Tylor Norwood, welcome to Factual America. Tyler how're things for you there, I gather, in San Diego?
Tylor Norwood They're wonderful. It's warm and sunny, which is very pleasurable and happy to be on the show today.
Matthew It's great to have you. You're a director, producer, cinematographer and writer - that's just your credits on the film we're gonna be talking about today, but I know you've done other docs. United States of Detroit is one that's fairly recent. But the film we're talking about today is Robin's Wish, which just come out this year. It's basically a film about the last year and a half of Robin Williams's life. But we'll talk more about that very shortly. Unfortunately, Robin passed away on August 11, 2014. Where can listeners find this film? I know it was released in September.
Tylor Norwood 4:43
Yes, it should be everywhere. So I know that we're on Amazon, Google Play, iTunes, YouTube, on and on and on. We have good distributor, they got it everywhere.
Matthew 4:53
That's excellent news, because it's definitely a film worth people watching. That's for sure. So thanks again for coming on and for making this film. For those of our listeners who haven't seen it, maybe you could give us a little synopsis of the film, if you don't mind. Again, it's called Robin's Wish, if I hadn't said that already.
Tyler Yeah, exactly. So the film chronicles a really unknown chapter of Robin Williams's life. Because I think, there's been some really amazing biopics made about this iconic figure, that cover where he was born, and his early rise to fame and all that stuff. But actually, the way that Robin passed from this world, we sort of didn't really get a clear understanding of. And that was 1) because, what it actually was, he didn't know during his lifetime. And then 2) is that even his wife and family members didn't know until after his autopsy, which was three months after he passed. So finding this rare neurological disease, Lewy body dementia, just right throughout his brain, you know, neurologist said it's one of the worst cases they'd ever seen. The idea that that was kind of unknown information and really missed the news cycle around his death. Because you know, when he dies, you want to report whatever the story is, within a day or two, right? The idea that the science wasn't clear until three months later, left this as a sort of story that was untold. And so the powerful thing I think this film does is reveal that truth, reveal the truth of who Robin was as a man, which I really fell in love with was the idea of like, you know, Robin Williams is larger than life. But Robin, you know, that was really just a beautiful human being that was behind all that incredible work. And so we did a, I think, a good job of revealing that person. And so you learn what really happened to him, what he went through. I think if you're trying to understand someone, the way that they face adversity, and I think you can easily say that this Lewy body dementia, that he faced, was his biggest adversity in his life. You learn a lot about who he really was. Because I think that's when you either bend or break or stand up. And I think he stood up. The film is really a testament to that. About who he really was and getting that story correct and why he left us all?
Matthew Well, I think these are all issues, we're going to then delve into in a little more detail here hopefully. Often in episodes like this one, when we're talking about someone who's famous, I often have to say, well ask, maybe you can tell us a little bit more about that person. Because, you know, generationally, people may not know him, but the thing is with Robin Williams, I mean, I mentioned it to my kids and they know immediately who he is. I mean, he's Teddy Roosevelt at Night at the Museum. I don't think we have to tell the world who Robin Williams is. That's the amazing thing about this. But I think one thing you did capture, you did have a little bit of a look back at the Robin Williams that I think we know and love. So if you don't mind, you've provided us with some clips. So we're gonna listen to another one about, I think this is Shawn Levy the director, producer of Night at the Museum series about Robin, how he was always on.
Speaker 1 7:59
When you're in the room with Robin, it is full go.
Robin Williams 8:03
Thank you, not at all. Theodore Roosevelt 26th, President of these United States of America at your service.
Speaker 1 8:09
He was a constant spark. Comedic spark, ideas spark, throwing in lines, improvising a ton. Some of the biggest laughs are things that Robin invented on the fly. I remember many, many days, where Ben Stiller and I would look at each other, because we're just watching Robin Williams, off the top of his head just go off. And that kind of manic, wildly creative, bottomless pit of ideas. That mojo, that ability, which was like a superpower, I'd never seen anything like it.
Matthew 8:48
I think that's a good sort of synopsis of Robin Williams I grew up with, it's just amazing. His appearances on like talk shows and The Tonight Show are just iconic. These are things you can still look up on YouTube and watch to this day, and they're absolutely hilarious. We've never seen anything like this guy. You were already alluding to this, that's the Robin we do know. But what didn't we know, not so much about what he didn't know, but tell us about those last year and a half, two years. What was Robin going through, but more what were others seeing, you know, in terms of how Robin was living his life?
Tylor Norwood 9:40
Yeah, so Robin was, you know, experienced a slow and steady decline, which for him was deeply perceptible, right. It's the idea, the thing that we all recognize about Robin Williams and the reason that those shows that he's on Late Night, those appearances were so special, is because you could see in real time that this like super human ability he had to create entire worlds and fantasies and make us all laugh and draw us into these things that he was creating, could happen in a moment. That he had that kind of faculty about him. So he had these imperceptible sort of dips in his abilities, but he felt them very deeply. And so, you hear Shawn Levy talking about that in the film. But it was basically this idea that, you know, he was having trouble remembering lines, he was having trouble combining his lines with a performance. And that was very unusual for him, because, you know, just months before the last Night in the Museum film, where these things started really becoming noticeable to others, he was doing a one man show almost on Broadway called The Bengal Tiger at the Baghdad Zoo. And I mean, it was a one hour play where there's, I think there's like a 10 minute intermission, but he's going full speed with almost all the lines and he never misses a beat, because he's Robin Williams. But he starts noticing this steep and precipitous decline that begins in what what I think his wife and his close friends experience as a drip. You know, he didn't feel quite as comfortable going up on stage and doing improv anymore, which like, his wife describes as being, you know, she knew it was a bummer for him, because that was actually something that fueled him, he got so much joy out of it. And so to see him pull away from that, she was concerned but thought, you know, he's 60 years old, maybe he wants to slow down or hang up. You know, like, nothing that people were deeply concerned in the beginning. But the idea that on Night at the Museum 3, Shawn Levy, the director was having trouble getting a good performance from Robin. I think that's where people started going, Oh, wow, something is wrong. And then it extends to the last TV show Robin did, so I'm gonna jump too far ahead, but they started noticing other symptoms there that were physical. And he was going to get brain scans while he was in production on that show, which is never a good thing and deeply memorable here, David E. Kelly, who's like helming that show, that if your person at the top of the billing sheet, is having to have brain scans, it's a scary moment. And I think actually, the thing that's really powerful about this film, is you get a lot of people coming forward who are saying, you know, I was deeply traumatized by what I saw my friend, and my partner, my colleague go through. And this was an opportunity for them to share those stories, which I think actually is really cathartic.
Matthew 12:12
Okay. Well, that brings us straight to our next and probably final clip, but we don't want to show the whole film here, we want people to go in and look at it, and digest it in its whole hour and 16 minutes or so and pay for it. But Shawn Levy, again, is talking about, I think we may have actually another clip, but this is one where Shawn Levy talks about shooting on the third film of Night at the Museum. And what they were starting to see.
Speaker 1 12:43
The third movie, the last movie, I would say, a month into the shoot, it was clear to me, it was clear to all of us on that set that something was going on with Robin. That's an experience that I've not spoken about publicly ever. We saw that Robin was struggling in a way that he hadn't before, to remember lines and to combine the right words with the performance. You know, when Robin would call me at 10 at night, at 2 in the morning, at 4 in the morning, saying, is it usable? Is any of this usable? Do I suck? What's going on? I would reassure him. And so I said, you are still you. You're Robin fucking Williams. I know it. The world knows it. You just need to remember that. My faith in him never left. But I saw his morale crumbling. I saw a guy who wasn't himself and he thought that was unforgivable.
Matthew 13:50
So we're already talking about this last year and a half or two. Certainly, I think the film focuses in on 2014, because he was doing Night at the Museum and the TV show and also getting this treatment. And I think it's very powerful there, where, you know, Shawn Levy basically says, he's getting calls in the middle of the night, basically from Robin saying, do I suck? I am horrible. Is this any good? So, you have his wife, Susan Schneider Williams on quite a bit, but she talks about the things that not even his friends were seeing or not directly. Paranoia, visions, panic attacks. Could you say maybe a little bit more about that?
Tyler Yeah. So the one thing that became really clear to me, in terms of telling the story, is that, you know, Robin Williams was a corporation, right? Like, you know, the Tom Hankses of the world. These mega movie stars, you know, if they work or don't work, you know, 50 or 60 people don't work or do work. And so when he started experiencing this symptoms, it was very important for everyone involved to say, okay, let's try and keep us out of public eye. Let's try and kind of titrate who knows what in like, so that we're not giving away too much to too many people. And we're sort of keeping this as much under wraps as possible. With the whole concept being like, once we know, then we can tell people, but we don't want to get people worried. And, you know, so the idea that Susan, you know, his partner and primary caregiver, right, was really with him through all these things. And they were really experiencing, you know, having to lie to their friends about like, Oh, you know, Robin doesn't feel like he can go to this birthday party or that thing, when it was really the fact that he couldn't go to these things, right. Like he was having real deep panic attacks and anxiety. And these are all symptoms of this Lewy body dementia that he had at that point, and just didn't know. But, you know, it dysregulates your brain. It basically turns off parts of your brain with sort of inactivity, and so your brain tries to compensate but you're still left, sort of, without the ability to process things the normal way you would. And so it really is the beginning of this deep decline. But the thing from Shawn Levy that always sticks with me, and makes me really feel for Robin, is that, you know, Shawn says, you know, I saw a guy who wasn't himself, and he thought that was unforgivable. For me, that really gets to the sense of service that Robin had. The idea that he saw what he was doing as, you know, this beautiful, like, exhilarating thing that he got to give the world. But that that part of he got to give the world was really important to him. And I don't know if you'll play the clip where we find a quote from him in one of his books after he's passed. But, you know, it's the idea that service was so important to Robin, that being someone who could give the world a laugh, give the world a moment to feel something, was deeply deeply fueling and important to him, and that he was losing the ability to do that, just was devastating. And that's something that no one was talking about, at the time that these things were happening. But I think Shawn Levy, amongst others, but Shawn Levy really is a colleague, right. I think as a director, he understood deeply what it meant to not be able to be yourself as a professional and as a sort of performer. And the toll that that would take on him. So that was some of the things that were happening at that point.
Matthew I think it's, like everything in retrospect, especially when it comes to things like mental illness, I think, it's only in retrospect, we often then finally see Oh, yeah, it's obvious. What struck me, I've seen the films, I've seen them with my family, but seeing those clips from the third Night at the Museum, he's a shadow of himself in terms of his physical appearance. And I think you capture very well, those film of the film, you know, where they're showing him. And he's just kind of standing off to the side, and he might be next to Ben Stiller, whoever, but he's just kind of, he's not himself definitely, is he?
Tyler Yeah. The Wall Street Journal did an amazing review of the film and really loved it, which was great. But Joe Morgenstern, the writer of that review, is one of the great critics and film writers in the United States. And he recalled in that article that he had gone and been on the Fox lot when they were shooting that film. And he saw Robin and knew Robin well from other stories that he'd done about him. And that he thought, he writes in article, that he looked at the man and thought that Robin was his own stunt, like, was his own double. That he like, you know, that there's that sort of perceptibility of like, the person who's stand in, is sort of that much less charismatic. They kind of look like the person, but there's just something missing, that is that X Factor thing. And the idea that this guy, you know, this writer was on that set and just, you know, knew Robin, but couldn't recognize him, I think is really emblematic of the way that people were feeling about how things were going. And the idea that became really troubling at that point was, I think at that point, Robin had a very strong sense that he was not himself. And he was really struggling with that. But that moment where you start seeing these things were, you know, they even had to change his Teddy Roosevelt costume because he was losing weight precipitously, as part of this. And so he was looking like a shell inside this big, you know, he used to be, he was actually a pretty strapping dude, right. He was really into cycling and very, very physically active. And so, he was like, you know, a lot of his friends actually describe him as like a really kind of, like, tough, you know. And the idea that he was losing all this weight suddenly and looking much older than he actually was and they were having to, like, make all these adjustments because of that, I think was really troubling to everyone involved. But my heart in those moments really go on to Robin and this idea that he's, he's trying to fill out this sort of contractual obligation, but he's almost in no position to be on those sets at that point.
Tyler That's right. And at the same time, I think, at least what I picked up on this is that, and we're gonna get to it in a moment, he himself, he obviously, he knew something bigger than what they were telling him was happening, but no one knew what was happening. And so how do you communicate this? You know, how do you tell people you're seeing, you're hallucinating? Because you don't necessarily know that you are.
Tylor Norwood 20:00
And there's so much stigma, right? But you have these sensibilities that your mind is not functioning properly. But there's so much stigma around that. I think, you know, he had an arrhythmia in his heart that they got a surgery for it. I mean, it was pretty straightforward. It's like, Oh, you know, something was wrong with his heart, they fixed it. And like, you know, he didn't have, there's no compunction about shame, or any of that kind of stuff. But for some reason, you know, we just have these things about, if your brain isn't working properly, it's somehow your fault. And I think he deeply felt that. That was part of his journey, you know. As you say, like, there's a point you'll be playing here. But like, the idea that he was very cautious about how he talked about these deeply traumatic things he was experiencing, because he had a lot of shame about it.
Matthew 20:39
And so, obviously, at the end, he ends up committing suicide, and we'll probably talk a little more about that in a few minutes, but it becomes, it is this media circus. And I think you've already alluded to, you have 24-48 hours of a news cycle to come up with reasons. And to this day, until I watched your film, to be honest, it's what I kind of had thought had happened. We knew he'd struggled with depression, and some substance abuse over the years, had a cocaine addiction, which he was very upfront about and included, in one of his stand ups, kind of the tears of a clown sort of feel or image.
Tyler Right. That was very troubling to a lot of the comedians that I talked to. Because that's something that is real for that community, like they do have some pretty stellar comedians who fall into, you know, just general depression or drug use as it relates to depression. So the idea that Robin was getting tossed in with that group, you know, the Jim Belushi the Chris Farleys of the world was really troubling, because that's not a club that they want to add more members to. And the idea that like, that wasn't true for Robin, and that they all had a very different sense that this was not a guy who walked around with a cloud around. This was a beautiful man. And like, you know, he gave so much joy and was so generous. That was something that I thought, we got a lot of traction with the comedic community. Because the idea of a sad clown is just, it's sort of a lazy trope, right? And it doesn't even do justice to the people it might apply to. So the idea, the part of what this film does, is pull him out of that, I think is really cool. Brings us all back our hero again.
Matthew Yeah. And so, as you mentioned, we've now found out that he was suffering from Lewy body dementia. There's a clip here, which is the one that I think, it's one I'd like for us to listen to. Which is basically his friends, Shawn Levy's on there, his wife Susan's obviously on there. It's talking about how they want to set the truth straight. That this wasn't, you know, there's this image of Robin now, because of what had happened, again, you said the stigma, he commits suicide so everyone just assumes he's maybe not the person we always thought he was. And why I think a lot of these people were quite willing to cooperate with you on this film. So let's listen to that now.
Speaker 2 23:10
I think it's important that the truth comes out, because there was so many affirmative things that Robin stood for, and we want to believe in all of them. We want to believe in him. And there's a danger that his suicide could occation people to think, Oh, well, he wasn't what we thought he was. We didn't know him after all. But we did.
Speaker I felt like I was somehow being loyal to him by not speaking about the struggles that we saw. We felt like that wasn't anyone's business. And so the story is one of Robin being at the mercy of something that you could not control. And even worse than not being able to control it, not even knowing about it.
Speaker 3 23:58
It was not till October, I was called in, to sit down to go over the coroner's report. There were no surprises about what was in his toxicology. I knew my honey was clean and sober. They sat me down and said he, you know, essentially, Robin died of diffuse Lewy body dementia. What is that? They started to talk about the neurodegeneration. He wasn't in his right mind.
Matthew 24:28
So this is about setting it straight, basically about what happened to Robin Williams. But why haven't we heard more about this until now? I know Susan, his partner did a speaking tour, I think. You've mentioned other docs, about other docs, but I don't really feel like much has been done on this until your doc came along.
Tylor Norwood 24:54
The reason that we haven't heard about this until now is because really what we had to do in the making of this film was untell a story. And then retell it in a new way that gives you new information. And that process is really onerous. It's onerous for the audience, if not done well, right? Because then you not only have to hold in your mind what you'd heard before, get rid of it, and then make space for something new. That's not usually how movies go. We're giving you facts, you're processing those and you're making a picture of what you're seeing and understanding. So that was really difficult. And it was a process that I went through in making this film, which was, you know, when Susan came to me, I said, this is something that you can't be the only voice in. And the process then was finding other people who could say, because she had a very clear record of the story, but I had to go bet that with all these other people. I had a sort of concentric rings circle theory of like, you know, you and Robin are the center of this. But really, in my life, my friends, I don't know something's really wrong, until you can't keep it together at work anymore, right? There is some real value to that. Like, of course, you knew Robin better than anyone else. Of course what you saw was more intimate and more detailed than what anyone else saw. But the fact that he was on a movie set and couldn't remember his lines, is, in some ways, more important in certain aspects. And so that was the thing that had never been done. Shawn Levy had never come forward and talked about any of this stuff. David E. Kelly had never come forward and talked about any of this stuff. So once we started getting that and Robin's friends coming together, you have a clear picture of 17 people coming together. And then in addition to that, from a journalistic standpoint, we got five different really leading organizations in terms of brain science and Parkinson's and Lewy body dementia, to come forward and get the science of what we did. So essentially, groups representing over 50,000 neurologists signed off on the science in the film. So once you have those things in both hands, I think it becomes a lot easier. We've done a lot of the work for the audience. They don't have to say, Okay, this is A perspective and now we have to balance that against what else? So I think that was part of the success that we've seen in the film, is that we did a lot of journalistic work to unpack something, repackage it, and put it back in a way that makes you go, Okay, cool. I get Robin Williams back, you know, fantastic.
Matthew 27:01
And so how long did that take you? That sounds like it took a long time.
Tyler Oh, yeah. So I have a production company, we do commercials and all sorts of other stuff. But this was a running project that went for about three and a half years, from the moment of like conception to going through it. And part of that actually was convincing people that this film is not like most celebrity documentaries that you'll see. Because usually it'll sort of be like, let's start where they were born. And on the day that they died and cover their entire life in an hour and a half. I was like, I just want to stay in that last year and a half and give people a real sense of what this man went through. Because I don't think we can shoehorn all of this new information into 10 minutes at the end. And so that process took some convincing. But yeah, I think it was ultimately really worth it cuz I think it's a special film that isn't like other celebrity films that I've seen before, which made me feel like we've done something important.
Matthew I would second that, certainly. And also say that, believe it or not, I think we're gonna go to a little early break here, and then give our listeners a few seconds to, I don't know, adjust their headphones or whatever they do when they have our little breaks, and we'll be straight back here with Tylor Norwood.
Factual America midroll 28:10
You're listening to Factual America. Subscribe to our mailing list, or follow us on Facebook, Instagram or Twitter at Alamo pictures to keep up to date with new releases or upcoming shows. Check out the show notes to learn more about the program, our guests and the team behind the production. Now back to Factual America.
Matthew 28:29
Welcome back to Factual America. I'm here with Tylor Norwood, the director and producer and writer and cinematographer of Robin's Wish. The New York Times said "in roughly equal parts the documentary Robin's Wish strives to honor the career of the peerless actor, comedian, Robin Williams and to raise awareness of Lewy body dementia, a form of progressive dementia that was diagnosed in Williams after his death from suicide in 2014." Tylor, I know you're not a doctor, but what is Lewy body dementia?
Tyler Yeah, so one of the great things about being a filmmaker is you get to be sort of endlessly curious. I have talked to a lot of neurologists, I have, I think, understood this disease very well. But I will also caveat that by saying not only am I not a doctor, I don't hold any degrees or purport to be a medical expert. But, as a layperson, trying to understand this thing, essentially what Lewy body dementia is, is you have this thing in your brain called alpha synuclein. And it's a protein in your brain that's very helpful. As far as neurologists understand now, it kind of exists in synapse, so it sort of helps in the transition of electricity and basically helps your brain runs smoother. The problem happens, when Lewy body dementia begins, is these proteins start clumping up, and you can sort of imagine them as kind of becoming knotted, so that they become these big clumps. And what those clumps unfortunately do is they begin shutting down portions of the brain, because they're just taking up space that they shouldn't be taken up. You don't have a lot of extra space in your brain. And so when something starts taking up that space, it starts changing the functionality of your brain. What's really interesting is you have this thing called neuroplasticity. And Robin had it in spades because basically, it's the concept of, if you're a muscle down sort of weightlifter and you get MS, you know, multiple sclerosis, you'll last much longer than say you or I would with the same thing, because you have more sort of, they can be worn down and still maintain functionality. So Robin had this intensely sort of facile, dynamic brain. But as this disease sort of grew and took over more and more of his brain, he, like anyone else, fell to this thing. And essentially, what it does is, it starts kind of at your brainstem. And so it's working in kind of deep parts of your brain. So this is why, unlike Parkinson's, which is very much on the same spectrum, so Parkinson's we associate with shaking, Lewy body dementia ends with Parkinson's symptoms. So it kind of works from the inside of your brain out. And then Parkinson's sort of works from the outside in, if you want to think about it simply, very overly generalized, but it is important to know that they're the same thing. Because what happens at the end of Robin's life, is he gets a Parkinson's diagnosis. And so people went oh, so he had Parkinson's. Well, he'd gone through all those horrible symptoms that people with Parkinson's end with, he'd already gone through all of those. And then he started having these motor issues that were very visible. And people would say oh. So that's the important thing, is that people with Parkinson's, they start with motor issues, and they end with all of the horrible things that Robin went through in the early days and got only worse as he went on, which is delusions, basically, impossibility of sleeping, you kind of can never enter REM sleep. And so the idea of that being absolutely a torture technique, right, is to keep you from sleeping. And delusions are number one thing, and also because of dysregulation of brain chemicals due to the damage of these little bodies are havocing inside your brain. Depression is like the third most, you know, important symptom, but there's like 40 symptoms, I mean. You can't really start poking around, basically creating holes in someone's brain not have it be showing up in all these different ways. So it's a really nasty thing. Top line is, it's a devastating neurological disease, there are no treatments for it, there are no cures for it. So it's a one way ticket to full neurological nowhere. Your system basically shuts down, right, your lungs eventually will shut down. So it's a bad, bad thing. And, you know, people with Parkinson's that I talked to, were terrified of the later symptoms, and they understand too well what people with Lewy body dementia, that they have the worst ride. Because the nice thing about Parkinson's is you can be stable for quite some time before all these things start setting in. But with with Lewy body dementia, you feel it and you feel it deeply. And it alters the way you are and alters who you are from a medical standpoint.
Matthew You've already alluded to Robin Williams and his fast cell brain, but I think it comes out in the film that, basically, mere mortals, if you will, or people certainly who didn't have his brain reserves, their resilience would have been, it's almost a miracle that he was able to continue acting in those last times.
Tyler No, absolutely. I mean, it's so important for your audience to understand is one of the doctors looking at his brain on autopsy was surprised that that person was even able to walk. So the idea that Robin was like, doing as much as he was doing, and a doctor looked his brain and said, this person shouldn't be walking.
Matthew And maybe you can tell us a little bit about what is being done. As you've already mentioned, 50, I think you've mentioned 50,000, if I remember correctly, neurologists. There are organizations, this is the first time I've seen a doc where the sponsors include the BU School of Public Health. And I think Sevonix is in there. Maybe you can tell us a little bit about some of the people who are behind this film?
Tyler Yeah, what I would say, it's because I had that, this kind of maybe a reasonable fixation on making sure that the film focused on this period of his life, so that we could go deep and wide rather than sort of just kind of cover it quickly. I ended up funding it for the most part myself. And then at the very end, we needed finishing funds and this great organization, Savonix, who basically are concerned with doing brain neuroplasticity exams for elderly people, generally, so the idea that, I think right now, this is a little plug for them. That's what you're asking for.
Matthew Well, I don't mind, I just think it's interesting. Because you know from a doc, as you said, you had a lot of skin in the game. But it's interesting at this times like this, what's happening with docs and we've had some docs here on, you know,
Tylor Norwood 34:49
I think you have to, you have to get funded any way you can. And to their credits, Savonix came through and said how much do you need? And they were very generous to do that. But they have a bascially, their idea is that people, the reason it made sense to me, because I was even sort of careful and very thoughtful about who I even took money from. But the idea that made sense to me is that the things that they're creating are these sort of exams that you could take theoretically on an iPad, right. But currently, you have to take those in front of a doctor and they have to watch you do these tests. And the test can be hours long. And so if you're 70 or 80 years old, and standing in front of a doctor, taking a test for two hours, seems really onerous. The idea that you could do that on your iPad from home and they could diagnose you that way, seems really exciting. I mean, it's the whole telehealth thing, which I think is going to be a real big deal. Especially as it relates to COVID, right? Like, it's really tough to get an elderly person to the hospital, and dangerous. So the idea that telehealth is sort of rising and they're a part of that, especially as it relates to neurology and getting people diagnosed, which I think becomes the moment for Robin, that I think is the absolute heartbreaker for me, is that he never got to know what this was. Until the end, he thought maybe there's something he's not doing. Maybe there's something, to get back to that Shawn Levy quote, about somebody who wasn't themselves and thought it was unforgiveable. The idea that Robin really held this is like, I'm not doing enough. There's something I'm not thinking of. And he kind of went to the end of his life with some sense of that, I think.
Matthew 36:13
And I think, it's specifically this Lewy Body dementia, but I wonder, I think must be what a lot of people with mental health toy with. I mean, I'm just kind of thinking out loud, but they, we don't really know what's going on in those heads of theirs. And what the anguish and even as great as your film is, you yourself can't even really get that across. We don't know what he was thinking those last, last few days of his life. Though, I think you have the great, the neighbors, which I thought was really interesting is getting his neighbors.
Tyler That's an incredible story. Robin, one of the things that Robin did is, and he lost his father at like a youngish age. I think he was 40 or something like that. So he went through a good chunk of his life without a father. And what he did is he found people like the great comedian, Jonathan Winters, and they became really close friends, but there was an age difference where it was, it was kind of a fatherly thing. And then he found this guy down the street, this guy, Jon Hepper, who's, I think Jon's okay with this, but he's an ex-CIA, like accountant, or something. I was like, this guy's like James Bond. You're a CIA accountant, what does that mean? But like Robin loved the military, right. So these guys totally hit it off. And so much so, that on the last night of Robin's life, when he had some sense, possibly, of what he was going to be going through that evening, he went and sought out Jon Hepper and asked for a hug. And Jon kept personal, what it is the exact substance of what they talked about. But you get the sense that this was a guy who just had run out of energy, like he'd been fighting so diligently and so purposefully for months and years, actually, at that point. And only to find that every day, he was less well off than he was the day before and losing all these faculties. And one of the things that, you know, as it relates to delusions, which are terrifying. The idea of a hallucination is that you believe something's happening that isn't happening, right. And those things can be, you know, benign, like a dog running that isn't running, like through the room, to something very terrifying happening, and not being able to discern what's real and what's not. And the idea that that's the number one symptom of Lewy body dementia really gets to the point of like, the things Robin must have had to endure, that he never spoke about, because he was afraid of being put away. I think that was something that Susan notes in the film is that, you know, he was really scared from some of this, I mean, this gets to the core of who you are. But, you know, some of his childhood trauma was about being abandoned, and this feeling of being separated from those that he loves. And the idea that he thought that if maybe he started talking about these things, he was seeing, you have to imagine he believed that that would then relate, they'd say, oh, we're gonna put you away now. And he had this childlike, you know, essentially, one of the doctors said that when he passed, he had the mind of like a three year old, right? Like his ability to process complex thoughts was that of a three year old. And so, at one point, near the end, a doctor, because of all the sleep deprivation he was going through, was realizing in a exam meeting that Susan was sitting next to him, he was like - Susan, are you getting sleep? And she was like, ahhh I haven't slept in a few days. And it's like, that's not okay. And so he was like, you guys have to sleep apart. Because, Susan, you're the only one taking care of him. You guys have to get separated. But even that Robin couldn't understand and said, does this mean we're separated? Does this mean we're like divorced? So it crushes me to know that he had this inability to process what was happening, but even there was a slight bit which is that, when he got his Parkinson's diagnosis, he stopped the doctor and said, are you sure I'm not schizophrenic? Are you sure I don't have dementia? And the doctor said, No, you're okay. So, he did, he did ask for help in the right way, in the best way that he could. Just unfortunately the medical professionals that were helping him just weren't equipped to act at that moment. But he does actually say it. And that's the part that you're wow, like, you know, so that's the part I say, Man, this guy was really fighting. He was pushing and doing everything that you or I could have done. And it was out of his control. It's a one way ticket. It's an incurable disease that ends in death. I think that's the thing where, that last night, where he's talking to Jon Hepper, I think he's having to make peace with that. Just unfortunately, he's having to do that without the understanding that this thing is called Lewy body dementia. It's not his fault. And this would happen no matter what he did.
Matthew And I think, on that point, the film's titled, Robin's Wish. I know the answer, but maybe you can tell us what Robin's wish was. And I think, because that wish is what that wish is, I think your film is helping with that, but tell us what Robin's wish was? Or is.
Tyller So for me Robin's wish is twofold. One, I think is his personal, sort of like, wish for himself is that he would have had a diagnosis. I think, if there's any sort of an afterlife, and he has any perspective of looking back, damn, I wish I could have known that like, this thing wasn't my fault. Like that would have meant a lot. And it also would have given him and his wife the ability to sort of like process this thing together. And they're both so resilient, right? They're both ex addicts, they both come from this very difficult past. You know, Robin, really, in a lot of ways, surmounted his own depression. And that was through daily exercise and really staying ahead of it, on top of it. Like, this is a guy who could handle adversity. If you had told him this is what it was, I have every confidence that he would have said, okay, right. And then that would have begun a process of healing as he was passing. The other thing, that I think gets to the thing that we can all really latch on to is, that Robin cared about the world, right? I think that's the reason he gave so much, he worked so hard. And he used his genius for sort of a benefit to others. Because I think he could have been a wonderful CEO of a company or he could, you know, he could have found another way to use his incredible intellect. But he wanted to give it to us. And so what's amazing is that when his wife was going through the process of this film, and doing her interviews, it was very difficult for her. And there was a period where, after one of the particularly difficult interviews, she went to his bedside table, which she hadn't gone into since he passed as sort of his private space. And she wanted to keep it for him. But she just needed something from him. She needed some message or some sort of thing that you can imagine a widow might be in a moment of needing. And she opened up his AA book. And on that first page that's usually blank in every book, he'd written in big bold, sort of like flourished cursive - I just want to help people be less afraid. And he dated it and signed it. And you kind of get this sense of like, that's what he was always doing, right? This thing that she found, of him wanting to help everyone be less afraid, that was really his wish always. Like it's the reason that someone gets on stage and hopes to make us all laugh, right. There's a personal aspect of that, hoping maybe I'll entertain, maybe I'll get some sort of personal rush out of this. But it's a communal activity, right. He gives you something and then you laugh and let him know that he's doing the right thing. And then they continue. And that's kind of how comedy works. But, you know, he was a brilliant dramatic actor, he went to Juilliard. He has an Oscar for Good Will Hunting. So the idea that he could, he could give us all a range of emotions, that he could sort of mirror to us, and then we can feel through him. So the idea that Robin's real wish in his life was to help us all be a little less afraid. My big hope for this film is that someone watches this and their heart opens back up to him as they understand what this guy really was. And that actually, to that sad clown point, that you realize that actually, the guy behind all this work was better than the work. You can't make, you know, you can't fake it, right? You can't fake it for that long. You can't trick people for that long. Like Robin, the man, was better than Robin Williams, the movie star. And so I think once people have that, that sense, I hope that when the credits are running, they fire up Mrs. Doubtfire, or Hook or Aladdin or just one of those fun, loving, beautiful Robin Williams films that's their favorite, and it has an experience of him coming back into their life. For me, it's the bird cage or things like that, that are just like incredible moments for me. That actually I'd sort of tamped down because I thought maybe there was some darkness associated. And so the idea that that's not true, and we can all have that back, I think is a huge service to him. And it really, it really brings into full focus, his wish, which is that we all be a little less afraid, we all take bigger steps, we all sort of open ourselves up to the journey of life.
Matthew And I think, that kind of takes me further into the whole project. This is more than a companion piece to, obviously, there's the doc that came out - Robin Williams: Come Inside My Mind. That was HBO 2018. This is much more than a companion piece. It's interesting, there's an aggregator, Robin Williams: Come Inside My Mind offers a poignant, albeit tantalizing, incomplete peak behind the curtain of a brilliant performer's, tragically curtailed life and career. That struck me, in the context of your film, I'll be at tantalizing incomplete. I mean, I'm not talking down on the film at all. But they didn't come into his mind really, did they? And certainly not the last couple of years. And you've already alluded to this. But what I wasn't aware of was, as you said, this humanitarian side. All the USO tours. How many times did he go to Baghdad and Afghanistan? I mean, it was absolutely remarkable.
Tylor Norwood 45:53
I think the incredible thing, to that point about his service, that just came to my mind as you said that, is we interviewed four star generals for this project, saying like, what was it like for him to like be, you know, what was your experience? Did he seem fake? You know, what was it like to have Robin Williams coming out to Baghdad, for the troops or going to Afghanistan. He went seven or eight times just during those conflicts, but he'd gone, I think, many, many times. And so I was talking to this four star generals, and you're a little nervous when you're talking to a four star general about saying the wrong thing, because like, you know, they're just very imposing, I think that's why they get that job. And so I was like, you know, I'm not saying Robin serves, but you know, he did, he did go out there a lot. The guy was like, let me interrupt you. Robin did serve. Robin served this, you know. And it was one of those things where I was like, holy crap. It just gave me this real sense of like, you don't get that easily. Like, these are guys who do not give compliments as a sort of point of work. Like that is not something that they do freely. It was a very clear statement of Robin's service to his community, to his country were deep and felt. And that was something for me that I took real like, oh, wow, okay, this is impressive. This is something that I think people should know. And I think it's a part of his character. And that was really the delineator for us on this film, was, you know, Robin Williams, the actor and the comedian, the entertainer, I think that the other film does an incredible job of giving a well deserved rounding out of like, who and what this thing was that like captivated the world for 30 or 40 years? But we also had this additional thing, which was like, yeah, but who was Robin? Who was the guy who no one knew about, who was suffering with this disease? And what did he do when no one was looking? I think that's everything. And what he did when no one was looking if you would go to Walter Reed Hospital, and he would sit with soldiers and counsel them. And there's a beautiful retelling of one of those stories in the film about sitting with an injured soldier whose girlfriend had run out of the room, once she saw him come back from the battlefield, missing an arm and a leg, and was not coming back. And the idea that Robin goes into that room, he doesn't just try and make this guy laugh, he sits with him. And he hears him and he shares his own sort of journeys with these kinds of moments of real unrest in your spirit, of like, I don't know where this goes next, but that there is some lasting hope that can be found in sticking it out and being of service to others. And I think those are the things that you can take away from Robin, the man that you know, are really really profound and lasting and give a completely different light to the legacy that he left us all with.
Matthew 48:40
And I think, personally, just for me personally, I did find the scenes with the wounded soldiers, for me those were the most emotional ones, I think. But I think, his ability to connect, I think one of the generals said, Look, soldiers have a real good bullshit detector and, I'm not exactly sure that's the term he used, but essentially it was.
Tylor Norwood 49:02
That's it. Yeah, it's exactly what he said.
Matthew 49:04
And, you know, there's Robin connecting with him. It wasn't just Good Morning Vietnam acting that out, he actually was connecting with these guys. He seemed, it's all in the film folks. Everyone needs to see this, but, you know, he could have bought an exclusive house in a gated community or something, but he didn't. He goes, lives in a neighborhood and is on a cul-de-sac, like a lot of Americans are, you know. And knows his neighbors. I think you do that very well, this capturing Robin the man, which is something that, at least for me, I don't know, maybe not so much reinstated my opinion of him, but I think just gave me a sense of the man that I had not had previously, which for whatever reason, we don't tend to cover these things in the world and in media. But in doing the interviews, you said you got I think it's 17 people come on camera. Well, we have some stars, in the sense of, you know, famous, relatively famous directors and producers. But, I guess, I imagine you could have had some really big stars come on camera, but you didn't. Was that a conscious decision?
Tyler Yeah, absolutely. I mean, we wouldn't have turned anybody away, if they'd have come to us. But we, you know, we only had so much energy to put towards these things. And kind of getting back to that concentric circle thing. I mean, it was really like, as you said, the people in his neighborhood really knew him. You know, the guy who lived down the street really knew him, they were friends. And that those were the people who saw the things that he didn't want the world to see. He didn't want, sort of his movie star friends to see who, you know, they're not in daily contact, they aren't even in monthly contact, right? It's like, it's these people in his neighborhood who see him when he walks his dog and they talk, you know, he stops by the fence, and they chat for 10 minutes, and they realize, Robin's not quite the way he used to be. And they start sort of piecing these things together, really organically. And so for us, yeah, it was about something really honest. And the truth was that the people who really knew him, and the people who were in his life and who worked with him, are in the movie. And it felt like a complete record. I didn't feel like at any point, we missed something. I think if that would have been the case, and it would have been a movie star I would have, I would have chased them to the end of the earth. But we didn't, I felt like we had a really complete record.
Matthew What about his children? Did you think about including them? Or maybe it's, I can only imagine what it would be like to try to go on camera for something like this.
Tyler I think the only reason Susan went on camera is because she felt like this is something that they went through together. And then in some really profound way that as a wife that this was her duty, was to make sure that the world understood who her husband really was. I think that his children have every right to their privacy and no necessity to be in this film. I don't think they would have added a lot, because again, one of the things that really is a credit to him as a father, is he didn't really tell them what was going on. He kept a lot of this from them. In order to, you just don't do it, right. Like if you have kids, I don't know if you have kids, but if you started thinking, hey, there's something's wrong with my brain, you wouldn't say, hey, something's wrong with dad's brain. We don't know what it is. It's kind of scary, but we'll let you know, we'll check back in later. And so the idea that he didn't do that, I think is a real credit to him. And so in a lot of ways, as far as I understand, you know, they were caught off guard by his suicide as well. And they went through a whole period of, you know, as anyone would, I lost my mother at, I think 23. And you just go through this process of healing that takes years. And so it's only been six or seven years since Robin passed. And, you know, I hope that they watch the film, and it means something to them.
Matthew And then, as we've already alluded to, Susan felt a duty to come on camera. But this must have been hell for her to go through this, to relive that year and a half.
Tyler She was not prepared to go as deep as I needed her to go. And that was something that we worked through very closely together. And there was some stuff, you know, frankly, that I, as a director, it was some of the most intimate and powerful interviewing that I'd ever had to do to get to where we needed to get to. And again, that was all because everybody thought they already knew the story, right? If nobody knew the story, you wouldn't quite have to push so hard or dig so deep, but it was like, we're gonna have to like yank people out of their mindset. And the only way you do that is by going there. And so yeah, we did, we actually did three, two hour sessions of interviews. So we have six hours of interview with Susan and she catalogues everything from the moment they first met, and then they're dating and him making funny raccoon voices at the dinner table with her kids to like, you know, all the way until the end, and the moments where she's receiving the call that he's passed. And, you know, it just, it's really a powerful record. And I will say, the thing I was left with after that six hours of really intense interview was a portrait of love that I hadn't seen in my own life. I was really touched by the way that they faced this horrible, terrifying thing together. That was something I was like, wow, I hope someday, if I'm lucky enough to have a partner like a Susan and something like this happened, that they would do the same for me. And the same to, actually to Robin's friends. You know what I mean? Like the way that his friends stood up and said, this isn't popular. This isn't gonna make me more famous. But it needs to be done. Like David E. Kelly and Shawn Levy, his colleague, they took a big risk. There's nothing for them to gain from talking at a school about something like this. That was really kept secret for so long. You know, Shawn Levy says in the film, there was 200 people on the set at Night at the Museum and no one ever came out and talked about this. I think that's a big deal.
Matthew And I think, the thought came to me too, is my own situation, you know. I live overseas, but my parents are in the states and, you know, I don't know what they're going through on a day to day basis. You know, you have as a child, if I'm thinking in terms of even the children, you know, you call whatever it is every few days or whatnot, but the day to day and as you say, they're not going to tell you anyway, basically, so, you know...
Tyler? It's service of being a good father, right, you're just not scaring your kids.
Matthew Yeah, well, I need to do a better job of it. I think you also bring in some medical experts. I found very interesting this, is it Dr. Bruce Miller, who you basically have in darkened lecture hall. I thought that was really, how you did that. Because at first I thought you were filming a lecture. And then I realized, no, I don't think there's anyone in the audience. And it's really dark. And you got the lighting. I mean, what, what went behind, what was the filmmaking behind that, the decisions that you were making,
Tyler Yeah, you know, you have this the stereotypical, kind of horror things for an audience, which is to watch a doctor in a lab coat, sort of extol some long syllable diatribe. But what we were able to do with Dr. Bruce Miller, who's a world expert in this as well, and his own writing could have easily done that for us, is to ask him to really push it. And I was like, you know, be a little theatrical here, you know, obviously, stay within the facts. But I think we need to shock an audience, we need to give them something that's visually entertaining, but also, like spoken in a way that like, you know, doesn't qualify every sentence. That we sort of, say some things that are a little bit shocking. And so he went for it. And I thank him for it. Because I think it really is a fun part of the movie is to be learning about these things, but in a way that feels cinematic.
Matthew I would completely agree with that. Tylor, it's hard to believe, I think we're coming to the end of our time together. But I just want to ask you, what's next for you, in terms of, do you have any projects on the go? Is COVID, you know, COVID must be posing a challenge there, needless to say.
Tyler As far as what I'm working on now, I'm really excited about a few things, we have some exciting projects that I think are gonna be really sort of interesting. And the important thing is that we have a scientific version of this film coming out. And if audiences want to get involved with Robin's Wish and how they can help after they watch the film, if they go to the film's website we have a lovely link to our consulting partners, which are the Michael J. Fox Foundation, Lewy body dementia Association, Parkinson's Foundation, American Brain Foundation, and the Lewy Body Dementia Resource Center, all of which are incredible organizations. And there's ways to donate and there's ways to just learn more about this disease from a scientific aspect, if people are like looking for additional research.
Matthew That sounds great, Tylor. I think that's certainly very important. And I look forward to more, to that science doc. If we haven't scared you off, we'll have to have you come back on and discuss that. So I want to thank you again, Tyler Norwood. The film is Robin's Wish, it's what we've been talking about today. So thank you so much for coming on. I want to give a shout out to This Is Distorted Studios, here in Leeds, England. And please remember to like us and share us with your friends and family wherever you happen to listen or watch podcasts. This is Factual America, signing off.
Factual America Outro 58:29
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