Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
S04 Episode 07: Normalizing Tourette Syndrome in the Music World
843 Plays8 months ago
Ethan Castro is back to talk about his experience with Tourette Syndrome and how it has shaped his path as a musician. We also hear from world-renowned jazz pianist Michael Wolff about navigating Tourette Syndrome throughout his long and storied career.
Cadence is the podcast where we talk about what music can tell us about the mind. Hosted by neuroscientist and musician, Dr. Indre Viskontas, the fourth season will bring you the stories of people who experience music outside the bounds of the average listener, and who use music as a tool to be heard in a society in which they are often ignored.
Recommended
Transcript
Introduction to Cadence Podcast
00:00:00
Speaker
I'm not a perfect musician, but I'm a really interesting, creative, you know, magical musician. But it took me many, many decades to accept that. I always wanted to be perfect. I can't help it. Maybe it's my dress, maybe it's just me. But, you know, that's not my strength.
Tourette's Syndrome and Music Communication
00:00:25
Speaker
Welcome back to Cadence, the podcast where we explore what music can tell us about the mind. I'm Andrea Viscontis. This season on Cadence, we're telling the stories of people whose lives have been transformed by music, who use music not just as a form of expression, but also as a form of communication, to be heard in a world that ignores or outright silences them.
00:00:51
Speaker
In this episode, we're going to talk to two people with Tourette's syndrome and hear how music became a central part of their lives. Tourette's syndrome is a neurological condition that causes people to have tics, to move suddenly or have muscle twitches or make sounds repeatedly.
00:01:14
Speaker
Most of us think of movement as voluntary, but people with Tourette's show us that in our brains, the default action is to move. Our motor system is complex, but there is one feature that's really interesting. There are brakes built into the circuits, and some movements aren't just a result of stepping on the gas the way we think they might be, but instead of stepping off the brake.
00:01:43
Speaker
When you have to sneeze, you can probably hold it in for a little while, but that takes concentration and effort. So too, some people with Tourette's can hold it an impulse to move for a bit, but eventually they need to let it out.
00:01:59
Speaker
We don't know what causes Tourette's for the most part, except that there is likely a genetic component, and also there isn't a cure. But as we'll hear, living with Tourette's is like living with other genetic features. It becomes a part of who you are and how you navigate the world.
Spotlight on Musicians with Tourette's
00:02:17
Speaker
What fascinates me is how people with Tourette's develop what seem to be superhuman skills, and our two guests are no exceptions.
00:02:27
Speaker
We'll talk to jazz pianist Michael Wolff, whom Christian McBride called one of the greatest musicians and storytellers in the world. He's built a prolific career as a composer, performer, author, and teacher. More on all that a bit later.
00:02:44
Speaker
But first, in a previous episode, we spoke to audio engineer and haptic tech pioneer Dr. Ethan Castro. Last time, he told us how being hard of hearing nudged him towards touch as a way of experiencing sound.
Ethan Castro's Journey with Tourette's
00:03:00
Speaker
Ethan also has Tourette's.
00:03:05
Speaker
When did the Tourette's show up? It's hereditary. So that one was early, about three years old. My mom took me to the doctor because she said that I was twitching. So I was like, this kid got ADHD or something like that? They're like, we're going to watch him for a little bit. And then by the time I was six, I got my full diagnosis. Yeah, no, this is definitely Tourette's. He's doing the vocal tic. He's fidgeting all the time. I think I had like a shoulder tic.
00:03:27
Speaker
And then I would have a really cool little kind of thing. But imagine, you know, much cuter and younger and smaller and much higher pitched. Yeah.
00:03:37
Speaker
Most three-year-olds are constantly on the move. It's how we wire up our relatively useless baby brains. After all, the baby brain doubles or triples in size in the first year and then explodes in connections. In fact, three-year-olds have more synapses than adults do. And all the experiences and inputs they're getting in the toddler years are shaping how their brains will function throughout their lives.
00:04:04
Speaker
Now, imagine a three-year-old whose motor pathways are an overdrive. The way I understand and use my Tourette's is kind of like throwing gas on the fire. If I move my arm and I have a tick that moves my arm three more times, over the course of a month, while somebody may move their arm maybe in this certain direction, maybe 20, 30 times, someone with Tourette's is moving it 300 to 1,000 times. So there's almost like a 3x
00:04:32
Speaker
to 4x, 5x, to up to 10x type of repetitive motion of extra practice that someone with Tourette's might have when they give or when they engage in a certain motion. Kids, and well, the rest of us too, really, learn by repetition. I have a hard time getting my five-year-old to practice her bow hold as she's learning to play the violin. But imagine if I didn't have to try. What if she just did it over and over and over again?
00:05:02
Speaker
How quickly might she pick it up? With music, because it's so structured, there's only so many things that you can do within that realm. So even if the Tourette's is not exactly right in the thing that I'm trying to practice, having it be adjacent means all the muscle memory and the nerve pathways towards that thing become accelerated. Instead of having a twig as like the nerve branch, it becomes like a ranch or tree trunk. That's how I describe it.
00:05:27
Speaker
And so that's why also sometimes if I learn something incorrectly, it's really hard to break that connection because it's so muscle memory, nervous memory, there's so many more nerve pathways that got excited towards that. Now add to all that practice a motivating force. What if you couldn't hear what the adults around you were saying? And what if you noticed that there were things you could do with your body that helped them understand what you were trying to communicate?
00:05:54
Speaker
So the decision to go into music was partly because of I think I felt a connection to when I was playing. It was the first time I could hear. And then the Tourette's was adding gas to the fire saying, if I can learn it, then I can learn this new language and I can then interact with the rest of the world and I can then interact with music again.
00:06:17
Speaker
That's when I think my eyes really open to this possibility of, oh my gosh, playing music is not something I can do to compensate for the fact that I feel disconnected from the world, but it's a way for me to connect with the rest of the world. But having Tourette's wasn't just a shortcut to getting the repetitions in for Ethan. There was another layer to navigate.
00:06:36
Speaker
It took me 20 years to figure out how to control them, quote, unquote, or suppress them enough. As soon as we come off the call, I'm going to Twitch all crazy and be nonstop stuttering and glottal stopping. But I've learned to control it and focus the expression of them for a moment, just like I can control and focus and really concentrate on hearing something for the moment. But last night at two or three in the morning,
00:07:00
Speaker
I mean, you could speak right at me and I'd be like, I'm sorry. All my compensatory methods are down right now. You know, the processing computer's down. This is not going to work.
00:07:09
Speaker
I think that's one thing that people don't realize about Tourette's, that it's exhausting even when you're not suppressing. What is it like to have Tourette's for you? I feel like Tourette's is kind of my secret superpower. People don't know I have it. And then we both, two people, me and somebody else, will come into the same new experience to learn a new skill, like axe throwing. My wife and I went to go to axe throwing for the first time. We take the same lesson. We've never done this before, anything similar to it, both side by side.
00:07:38
Speaker
And every single time, whatever we've been doing, painting or whatever, we pick up new hobbies. I always somehow figure out how to get to a level of proficiency in a faster way because it feels like I've done it before by the second time we've done it. Or by midway through the first lesson, it feels like I've done it before. I'm like, oh, I found a shortcut here, here, here.
00:08:01
Speaker
I have to admit that I embarked on creating this episode because I had a suspicion that there was something magical or at least powerful about how people with Tourette's learn motor skills. So there you go. I'm laying out my bias front and center. But as an outsider, I have no idea how it might work. I feel like this muscle memory kind of already forming.
00:08:25
Speaker
And I feel like that's kind of how overall the benefit of the Tourette's experience is for me. And I have a mild-moderate case, so it's not at least one of those moderate to extreme cases or moderate to severe. So thankfully, it's not like controlling every aspect of my life and I don't have to take medication to suppress them. But at the same time, that benefit does come with the cost, which is, like I said, those
00:08:51
Speaker
fast connections, the strong connections, you know, whether or not they're actually more nerves or not, but the strong connections and habits that are formed that become impossible to break means that I can be very stubborn accidentally. And I don't mean to be stubborn, it's just that I've already jumped
00:09:07
Speaker
from here to here because it's a physical plug-in connection. It's not like I have to think about it and then get to that point and decide if it just jumps there immediately. So when you say a certain word or some certain input happens, it jumps to a specific output. And there's almost no way to go around it until you have to actively untangle each thing
00:09:30
Speaker
and find your way back. And that can be very frustrating in an organization, for example. My co-founder, one of my best friends, Val from Edson Research, he has to deal with it in a very intense, high-stakes setting where
00:09:47
Speaker
We have to address something that a client has talked about for one of our installations. And I'm thinking, no, there's no way. We planned it this way. And usually, that's my superpower in the company, is the fact that I can come to conclusions and find something and make these random connections faster than most of us so I can kind of get us to a certain answer
Aspirations for Tourette's Acceptance
00:10:07
Speaker
faster. But if it's a bad day, if I'm tired and I can't undo these connections and make that example or think outside the box, then it can definitely be a hamper on what we can do.
00:10:16
Speaker
And that's not even talking about if I'm tired and I can't control my actions if we're trying to do something very delicate with a lot of hand-eye coordination. What if we lived in a world where ticks, glottals, all of that was just not at all taboo? Is that a world that you would want to help build or be a part of?
00:10:41
Speaker
yeah i yeah if if if i meet somebody with with Tourette's i'm so excited because i'm like oh dude like and and we we i gush about hey here's all the things you can do with it it's like it's like this little mini cult i'm like dude oh you do know that you have this feature do you know that you have this unlock available but
00:10:58
Speaker
Yeah, it'd be really cool if people felt comfortable enough to do that. I've seen so many of my Tourette friends or peers that have Tourette's or people that I've come across. We're all facing the same, trying to hide it of like, hey, I'm tired right now. I don't want to suppress my stuff. So let's not hang out because we're just going to trigger each other. And it's like, all right, I guess so. I guess that makes sense. And it's kind of odd.
00:11:25
Speaker
What a question to say, do you want to envision a world where you can't envision that possibility of the world being there?
00:11:33
Speaker
You know, it would be nice to be able to not have to hide it and express it. But at the same time, that suppression has helped me learn to control it in a way that has improved my discipline in other aspects of my life. And I think a part of even finishing the PhD is a huge testament of discipline that I've been practicing every day for 30 years now. Wow.
00:11:59
Speaker
And if I didn't have that, you know, would I still be able to have the same abilities that I do today without the pressure of trying to actively practice a form of deception on the daily basis? You know, I don't know.
00:12:22
Speaker
I don't know either, but I believe strongly that when you're spending a huge chunk of your day practicing something, even if that's suppressing a tick, you're gonna be much better at that thing than anyone else around you.
00:12:37
Speaker
I wish it was better to talk about it. It should be okay to talk about it, even if we want to practice suppressing or not. I feel like we should talk and celebrate and be inquisitive and ask it, because I have so many questions now, and everyone does. Whenever there's someone who has a completely different tick than you,
00:12:53
Speaker
because I think a vocal glottal and like, you know, small thing here, that's kind of normal. But people who have like a complex tick, I think it's so fascinating. And I think that the network effect of neurons to be able to create complex activities and complex habits becomes, surely it must be enhanced.
00:13:12
Speaker
One of the reasons why we wanted to focus on Tourette's in this particular season is because I feel like any person with Tourette's should be given the opportunity to develop a musical education. Because just imagine, music is all about these same motor networks being trained. Better, faster, cheaper if you've got Tourette's, right?
00:13:33
Speaker
if it wasn't so okay, so the same discipline that you have to use to suppress your tics is like Quant is is increasing ten times magnifold when you're in a performing arts performance. I want to see a Tourette's band. Yeah
00:13:48
Speaker
and have everybody try playing. We can all just kind of tick out a little bit. And or we'll see everybody lock in. Like when there's a lock in, like on the groove, I bet you everyone would just be locked in and potentially it's the one moment when all of the ticks kind of passively are suppressed by the love and focus and dedication on the actual musical groove than it is on trying to be consciously active towards it.
00:14:15
Speaker
And movement is life. That's the definition of animation. It's literally life. I really get very angry about the fact that in society, people who have these kinds of socially unaccepted movements are discriminated against because it should be the opposite. We should celebrate any movement as an indicator that you are alive.
00:14:40
Speaker
And I feel like today's generation is a little more amenable about that. The fact that people celebrate Billie Eilish for having threats and want to see her take on stage and cheer for her. I almost cried when I saw that because that's not how I grew up. That's not how most of people in, I think,
00:14:56
Speaker
in this level 30 and older have not grown up like that. So I think that's also where my perspective comes from, where yes, I see the silver lining, but at the same time, it's hard for me to envision growing up in that more of accepting spot. But I do hope that it does exist.
Michael Wolff's Musical and Personal Journey
00:15:12
Speaker
Because my children, if I have a son, I believe it's a very high likelihood that he's going to have Tourette's. I want to make sure that he can express himself, not feel the pressure of having to constrain it and practice it if he needs to or wants to, but not have to feel the pressure of having to constrain it to just agree with societal norms.
00:15:38
Speaker
So that's Ethan's story. He's in the early part of his career and his star is already rising meteorically. But I also wanted to hear from someone who's been navigating Tourette's and a professional performing career for decades. And that brought me to Michael Wolff. What kind of kid were you when you were really little?
00:16:03
Speaker
I know that when I was really little, I was already into music because my father was an amateur musician and he loved music and particularly jazz. So he always had a lot of records that we would listen to. So even at four years old,
00:16:19
Speaker
you know, we got a piano and I would listen to the music and try to pick it out and stuff like that. I wasn't aware of anything that I was doing with Tourette's. I didn't know I had tics. You know, it was just me. And when I was about five or six or seven or something, my mother said to me, do you know what you're doing with your eyes? And I said, no, what are you talking about? And she didn't really continue. She just sort of left it like that. But I guess I was
00:16:46
Speaker
doing ticks that I wasn't aware of. So they did, I remember they did take me to the pediatrician. And according to my parents, he examined me and asked me questions. And he said to them, well, look, whatever he's got, it's not getting in his way. He can read, he can have friends. Everything's going great. He's smart. So don't worry about it. But there was no name for it. And my dad had had, I found out later, had had some ticks when he was younger.
00:17:16
Speaker
And he had an uncle, it was my great uncle, Muchy Wolf, and he had Tourette's for sure. Again, there was no name for it, but he did all these ticks and said weird stuff. So in my family, it was really, I just felt it was me. I really didn't think there was anything wrong with me at those early years. I just didn't even know what they were talking about.
00:17:41
Speaker
This is actually a remarkably common experience for a lot of kids. Despite the fact that there is a genetic component to Tourette's, many kids with Tourette's are born into families where there isn't a recent precedent, and their parents might not even notice anything is amiss. It wasn't until I got older, maybe more like
00:18:03
Speaker
high school that people started bringing it up because this was in the 60s when we had moved to Berkeley and people were doing a lot of drugs. And I was not a drug person, but I think they thought I was doing cocaine or some kind of drugs and doing these weird movements. Was I a drug addict? And I was like, no, no, I'm not into drugs. That's not me. But that's when I start thinking, man, what am I doing that's so weird? And then, again, I think I just compartmentalized that part of my life.
00:18:32
Speaker
And even in families that do know something about Tourette's, there's often a misconception that Tourette's is just a condition where someone swears a lot, uncontrollably. Coprolalia. But coprolalia is not the most common presentation. It's just the one that gets the most media attention. I was about 16 talking to my father about it. He was a doctor. He became a psychiatrist when I was a teenager. And I asked him, well, what's this?
00:19:00
Speaker
What am I doing now? What's going on here? He was from Mississippi. You know, it's not that Tourette's thing. You don't do that swear. Because they really thought his understanding of what was coprolalia, where you say bad words or words you didn't say. So I was kind of out in the middle of nowhere with this thing. I was on my own, really. I'd never met anybody that did that. I can just tell you that since I was a little boy, I was very self-conscious. And I think this must have started to do it.
00:19:27
Speaker
where I just felt like just never, you know, not confident and self-conscious. I'm embarrassed. Just to give some of our listeners who might not know, whether it's now or whenever you've had a moment where your Tourette's has flared up, what is it like? What does it feel like? Well, it's constant for me, but it gets worse. It waxes and wanes, you know?
00:19:57
Speaker
It feels like energy. In fact, Oliver Sacks was really helpful to me. I met Oliver when I was in my 30s, maybe even 40s, but I spent a lot of time with him. I was told when I'm performing, playing piano on stage,
00:20:13
Speaker
I don't feel it any hassles, playing, that sort of relief. But then when I'm talking on stage, I feel these ticks. And he said, well, I tell my patients, just let it fly. It's just energy. Everybody I've known with Tourette's syndrome, now I know a lot of people, of course, they all got a ton of energy and a ton of talent. They just often cannot focus the talent or corral their energy.
00:20:38
Speaker
But it's there. It's kind of the opposite of Parkinson's, you know, the inhibitors. We don't have whatever inhibits move, you know, so we with Tourette's syndrome.
00:20:50
Speaker
If there's a, if there's an impulse, it just happens, you know, like, you know, and, and also that when you have ticks, which I do, I have to shake my head or I make noises, wherever it is. I'm not going to do anything that a person couldn't do. It's not superhuman or that way, you know, but it's just, I can't control it. I mean, I can control it for a minute. If I decide I'm going to be still, but not if I'm going to have any energy.
00:21:17
Speaker
You know, if I'm going to be happy or sad or excited or whatever, then it's going to happen. That's exactly right. That impulse, the break being released, that's also how Tourette's shows us that our default state is movement, not rest. Finally, I got a diagnosis in my late thirties, you know, what I had figured it out by reading. The man who mistook his wife for a hat, I read that book by Oliver Sacks. Somebody turned me on and told me, oh God, this is me, this kid, Whitty Ticky Ray, that was in it.
00:21:47
Speaker
One of Oliver's greatest contributions was to humanize Tourette's, to show the world that these uncontrolled movements, tics, are not to be feared, but just a part of being human. And when you live with a condition like this from childhood, it gets built into who you are. You can probably recognize your best friend from the way they walk, their gait. Our movements identify us.
00:22:13
Speaker
So if you learn to move while having Tourette's, then those movements are also a part of you. People have asked me now, well, what's it like to be a musician with Tourette's syndrome? I said, I was never a musician without Tourette's syndrome. So I just know being a musician the way I am, being a person that I am.
00:22:35
Speaker
My dad is a jazz lover and so he had all these records that I really loved and listened to. Ray Charles and George Sherry and Count Basie and Oscar Peterson. So I just started messing around on the piano on my own and I was able to kind of pick out some stuff. And then my dad said, well, you could have piano lessons, but this was some old fashioned thinking, but he said,
00:23:02
Speaker
You can do jazz, you can study jazz, but you gotta take classical until you're 12 years old. I'm like, okay, I'll do it. I didn't like classical music. I didn't know much about it, but I did it. And I never lasted longer than a year with a teacher. Either I quit or they fired me. I was irascible. I just wanted to do what I wanted to do. And finally, when I was in the seventh grade, which I guess is about 12, 11, 12,
00:23:27
Speaker
A guy had a really great teacher in the old eight, so far down. She kind of figured out what was going on. She goes, I'm going to make you a teacher. You guys know what our lesson is going to be. Every week we're going to do one Beatles song. You're going to compose a song and then you're going to do the classical music. I won. I said, OK, that's a good. Now, that's an example of a great music teacher. I wish there was a Mrs. Markdale in every town.
00:23:54
Speaker
on my own. I'd go down to the basement where my upright piano was that my dad had thought, and I would just start doing it. You know, I'd listen to records and figure it out, what are these guys doing? And I had perfect pitch or anything, but I could, I just figured out all these systems that would work for me. When I was about 15, I finally got to a jazz pianist who was a teacher in Dick Whittington in the Bay Area.
00:24:18
Speaker
who came to the house every week, and that was amazing. It was like I was home. It was not easy. It gave me hard things to do, but that worked for my mind. If I could just sit there and watch him play,
00:24:32
Speaker
This is my decent shred stuff, or maybe not, but I can inhale it. And then that's what I would do with my classical music. I'd say, could you just play the piece for me? And I could just do it, you know, so I wasn't a great sight. So, but with him, I'd watch him play and I'd look at his hands and I could, while he was playing, I could feel inside me what that felt like to play that music.
00:24:52
Speaker
When I picture Michael in those moments, I can't help but wonder what's going on in his brain. Can he see things, maybe micromovements in the hands of the pianist he's watching that those of us without Tourette's cannot? Or can he mimic them in ways that I'm too clumsy to do? A lot of my music is really, you know,
00:25:16
Speaker
Science and soul is kind of a way to look at it. And to me, the inner sort of being of it, the soul of it is something that's much stronger for me than anything I learned intellectually, which I do. You know, I teach at NYU and I have to know all this stuff. But it has to serve the soul and the feeling. And I can just kind of osmotically, you know, osmosis make it happen.
00:25:37
Speaker
And I think the impulsiveness they're always talking about with Tourette's syndrome was always in my playing. The freedom for me of playing jazz and being able to be impulsive. I just feel like hitting this note or playing this chord or whatever I want to do, I can do it. I mean, it's within a structure. It's like playing basketball. You can't step out of bounds. But anything within a basketball court is OK.
00:26:02
Speaker
when I was 15, and that's when I started the jazz lessons. And then I met all these musicians, jazz musicians. I went to Berkeley High School at 3,000 people, 1,000 in each class.
00:26:11
Speaker
It was, you know, 40% black people, 40% white, 20%, you know, Asian, Latino, and stuff. It was a real intense school, and this was in the late 60s. There was a lot of civil rights stuff happening. But truthfully, all the musicians I met, white people, black people, whatever, we would just send them music. We'd just try to get through our classes and go to that band and play. We'd play out to school. That's why all my friends were from music. So it gave me
00:26:41
Speaker
It really gave me, I mean, I had friends before, but it really gave me a world to be in. In the real world of jazz, in those days, there were a lot of heroin addicts. There were, you know, black people, all different kind of people. And if you could really play, you could be accepted. And I felt like this was a counterculture that worked for me. Being a jazz musician is being marginalized. When I could play the piano, I felt
00:27:10
Speaker
A total relief. All that energy that I was talking about would go into that thought, that thought and that feeling and the sound and the tactile feeling of playing the piano to me. Very sensual, very tactile. And I also felt, you know, whatever was going on in my life, my parents splitting up or whatever's happening or...
00:27:31
Speaker
that the piano was always exactly the same every day. You know, the C was in the middle, the black notes, the white notes, the Qs, the sound, it never changed. It was very consistent. And I found it was comforting to go to that piano. So it became more than just music to me. It was kind of a lifestyle, you know.
00:27:50
Speaker
And I did have some drug issues when I was a teenager. People were trying drugs and I tried some drugs and I had a really bad reaction. I don't know if it was because of my Tourette's or whatever. I got some strong drugs that I didn't know I was taking and I really flipped out. And I had a year or two of agoraphobia and it was very difficult.
00:28:11
Speaker
And the piano was like my, it was my savior. It was just beyond anything intellectual. It was beyond music. It was a lifelock for me. And like I said, for meeting people, girls, friends that we get music with, that was really all I lived for. And one thing I learned is there's nothing like listening to music with somebody else. Can I listen with somebody else? I can feel the way they're hearing it. I can hear the way they're hearing it.
00:28:36
Speaker
So then we're sharing a whole other kind of inner view of things, you know, it's awesome. So when I play with my band or I play with musicians, whether it was I was 15 or now that I'm 70, it's the same feel.
00:28:52
Speaker
So what now? Should we be handing out instruments to every kid with a Tourette's diagnosis? How do we help those kids who are just now realizing that they move differently? They can't help it, and as a result, are often bullied or ostracized.
00:29:11
Speaker
When they have a conference, they'll do it at a hotel, and they'll have a kids' version that comes and maybe 100 kids or 70 kids. And if they have pianos in the hotel, those pianos are going 24-7. A lot of talent. But to be able to become a professional musician and to focus
00:29:29
Speaker
That's another story. It's hard to master music. All this talent stuff I'm talking to you about, about feeling it. Okay, that could be enough maybe, but for me it wasn't enough. I had to do ear training, I had to study, I had to learn all this stuff. But I had to deal with my own ADHD or whatever, so I learned, okay, I'm not gonna sit there straight at the piano for eight hours a day. I can't do it.
Challenges and Advocacy for Tourette's
00:29:55
Speaker
I can sit there for a half hour or an hour, and then I got to get up and go through something else and then come back. The hard part is being disciplined. And I always, always felt, even now, just not that disciplined. But what I learned to be is the tortoise rather than the hare. In other words,
00:30:11
Speaker
I just know, okay, maybe I can't do six hours a day like some people, but I'm not going to miss a day of an hour or two. Every day, every day. That's how I deal with it. But you have to have some kind of sense of executive function organization to be able to do it. And that's hard when you have to write some
00:30:35
Speaker
One thing that I've noticed in all the people I've spoken to with Tourette's is that there comes a time when they begin to accept that they are different, that it's not their fault, even if for a moment or two they might be able to suppress a tick. Imagine how you feel when you let out a raging sneeze in a crowded room. You'd get all kinds of nasty looks from people around you. And if something similar happens to you day after day,
00:31:04
Speaker
Well, maybe over time, you begin to realize that the problem isn't you. I have my strengths and weaknesses as a musician. I'm not a perfect musician, but I'm a really interesting, creative, you know, magical musician. But it took me many, many decades to accept that. I always wanted to be perfect, and I'm just fucking hungry. I can't help it. Maybe it's my Tourette's, maybe it's just me.
00:31:33
Speaker
But that's not my strength.
00:31:36
Speaker
You're lucky if you find a passion in your life, you know? And I found it. It wasn't until I was really 15 and started those jazz lessons, I just decided this is it. But my ambitions weren't high. They were like, if I could just get to play with some great musicians or if I could just get in a studio with real guys, but I was determined that nothing was going to stop me. That's one great thing that I had. I don't know where that came from. It's like, if you're hungry, you're going to find some food, you know? Or that's going to be your focus. Like, I got to get food. I got to get food.
00:32:07
Speaker
So later on in your amazing career, you spent a lot of time essentially on television, right, with Arsenio Hall. What was that like? Did you worry about any of the tics or things like that? Yeah, I had already, by the time I got on Arsenio, I kind of gave myself the diagnosis that I have to Edson. So, well, I was aware then of what was going on with myself.
00:32:32
Speaker
So yeah, with most of our scenario, I wasn't on camera. But when the camera would come to me, I did worry about it. See, what came with Tourette's for me was shame. And I always felt like, man, I'm a better person. This is what I really felt when I was little. If I was a better person, I wouldn't have Tourette's. If I could just figure out my psychological problems, oh, you know, something's wrong with me, then all those things would go away. Because I didn't know it was
00:33:01
Speaker
physical, neurological. I've talked with Arsenio about it recently. He said, well, you know, they were worried about it at Paramount. And I just said, no, that's a guy I want. People rarely said things to my thinks about it. But I guess everybody was aware.
00:33:15
Speaker
I just tried really hard when I was on camera not to do it. But it was, I have to tell you that, you know, it was five days a week and my wife became my girlfriend early on and she said, man, Friday night you'd come home and you would be tripped out from that intensity of trying not to tip and you'd just go wild, you know, for a while.
00:33:32
Speaker
And it's true, you know, if you suppress those ticks, they come back super strong. But it was exhausting. It's exhausting to have Tourette's syndrome. You know, people say, oh, I'm glad you have it. I wouldn't give up my Tourette's. I go, no, if I had a choice, I wouldn't want to have Tourette's syndrome. It's fucking exhausting and embarrassing.
00:33:50
Speaker
But I have no choice. So here I am. I've been diagnosed. I've lived to live with it. My life has been great. I got no complaints. I had really bad cancer for four years. That was much worse than Tourette's. So it's all relevant.
00:34:09
Speaker
It's not the same, but we all have something about ourselves that sets us apart, and some of us fight our whole lives to get rid of it while others accept it or even embrace it. So many musicians find that acceptance and grace by making music, which is maybe why musicians are often found in the fringes of a society.
00:34:31
Speaker
What do you wish society would do differently to make it less difficult for you or for people with Tourette's? The shame breaks my heart. Hopefully we're coming into an era where, but I don't know, it seems like we vacillate two steps backwards with every step forward. If you were to look hopefully into the future, what would you want society to do? It sounds corny, but I think awareness is super important. If I go to a play,
00:35:02
Speaker
particularly a play or a movie, sometimes I'll say before the show, hey, I just want to let you know, I may make some noises. I'm going to do my very best, but I have to add something. And usually, they'll be nice. But one time my wife and I were at something like that, and this woman goes, well, then you shouldn't come to any plays, man. You should leave right now. No, not leave. But most people, if they know what's going on, if they can, you know, handle. So I guess awareness would be great.
Conclusion and Credits
00:35:32
Speaker
I don't know. It'd just be great if people just didn't give a shit about what other people did.
00:35:58
Speaker
That's it for another episode of Cadence. Thank you for joining us, and thanks to Ethan and Michael for sharing their stories. If you enjoyed this episode, please follow us wherever you get your podcasts, and check out our previous episodes too. Cadence is created, written, and hosted by me, Andre Viscontes. This season is produced by Ireland Meacham and Matthew Rubinstein. It is mixed by Matt Noble with music by Rian Sheehan from his album, Stories from Elsewhere.
00:36:28
Speaker
You can find us online at cadence.show. You can also get in touch with us at cadencemindatgmail.com. Cadence is generously supported by the Germanicos Foundation. Audiation.