29 → New York, USA → Musician & Copywriter → OCD, Tourette’s → Serenity, CBIT, Communication.
R: Tell us a little bit about yourself…
K: “I’m just another poop butt who fell out of the penitentiary”
R: So, who are you?
K: If I knew that, we probably wouldn’t be stuck in this situation.
R: Where do you live?
K: New York.
R: How old are you?
R: What do you do?
K: Freelance Copy Writing.
R: How long have you been doing it?
K: A few years, on and off.
R: Do you enjoy it?
K: Once and a while you learn things about writing, storytelling, people. But you also gather a lot of misinformation about writing. Of course, that’s the fear of all employment, that it will swallow your creative soul. I don’t think that’s ultimately true. It can feed it.
R: What did you do before?
K: Last year I was farming. The year before I was a Fire Guard. Great job if you have an eye for safety and you want to get some reading/writing done.
R: Did you study?
K: I went to SUNY Purchase in the playwriting/ screenwriting conservatory. That’s where I met the folks in Terror Pigeon Dance Revolt, and started touring with them. It was a pretty experimental and collaborative experience. Not experimental in the sense that we pioneered anything, but in the sense that we were exploring what worked for us, each other, and our audience.
Some sing it like an alibi
We sing it like a battlecry
Some sing the sweetest tunes
Whistling out of open wounds
But me? I wouldn’t wanna be that guy
– Kid Cooper Levy
R: What does home life look like – pets / kids?
K: Family. I’ve moved out a few times, but I kind of boomerang. Right now in part due to a foot injury, but should be walking again in a few weeks.
R: What makes you happy?
K: I’d like to say something broad like having some kind of meaning. Maybe that’s because I’m too hard on myself, so when I feel like I have a purpose, it helps. I love film, literature, and music. But music is kind of a stranger to me. It’s the most mysterious of the forms I care about, and it makes me crazy. All the rules for what you need to have in a story, they CAN apply to music, but they don’t have to, and that’s interesting. I probably like kissing the most.
R: How would you describe Tourette’s in your own words?
K: “Sasa Basp!”
Those are some of “my own words” that tend to come out of my mouth when newly meeting someone. It’s kind of like, in that movie The Point, where the kid with no point is banished to the pointless forest. The pointless forest has a thousand points on every tree, which is so confusing for directions that it might as well be pointless.
R: How does Tourette’s interfere with a normal day?
K: It’s overwhelming and difficult. As soon as a third person is present, my tics flair up.
R: When did your Tourette’s begin?
K: I was diagnosed in 6th grade, but denied it because I only had few vocal tics. The OCD compulsions and ADD were much more pronounced.
“Yup. Some people tell me they hardly notice it. I’m like “wait til you ride with me on a New York subway.” Trains are really hard. Confusing social data.”
R: Was it disruptive in the beginning?
K: Yes, in the beginning, then it died down for years.
R: Is it disruptive now?
K: Yup. Some people tell me they hardly notice it. I’m like “wait til you ride with me on a New York subway.” Trains are really hard. Confusing social data.
R: Do friends or colleagues notice you have Tourette’s?
K: Yeah. My Tourette’s was hardly existent from middle school to college, and the first few years after it. I’ll cite an example. My friend C, who went to high school AND college with me came to visit a few months ago. I answered the door, was having some excited tics, and told her I had Tourette’s. She looked at me like I was being an asshole. But when I told my collage roommate I had it, he just said “Oh yeah, we know”. Which is weird, because I didn’t.
R: Does it affect your relationship with them?
K: Yeah, normally they get to know me better. If I’m having tics, they can sometimes read my excitement, nervousness, anxiety. And I’m more aware of what I’m feeling too.
“A kid who was struggling with OCD, ADD, and Tourette would have just fallen through the cracks”
R: Do you think your life would be different without Tourette’s?
K: Yeah, I mean, I think about this line from The Watts Prophets: “Whatever you fuck your brain with.” I’m not sure what would have happened without it, but here’s what did happen:
Dr. John Walkup, who I highly recommend to anyone with Tourette, talks about the way people with Tourette struggled with school in 90s. Before that, a kid who was struggling with OCD, ADD, and Tourette would have just fallen through the cracks. But in the 90s, you still fell through the cracks, but you fell up. Essentially, in a stricter system I should never have graduated high school, or college for that matter. People don’t know what they can expect from a kid with learning disabilities, so they don’t know when and how to push them to do better.
— Dr. John Walkup on diagnosing Tourette’s
Also, Tourette kids suck balls at concentrating, UNLESS they’re enjoying it, which is why we can play music, but not study. ‘calm, focused attention’. Walkup says in the 90s, if your kid had Tourette’s you’d give him an hour to do 20 minutes worth of homework. So I’m learning to make it all not too loose, not too tight.
And let’s not even talk about crushes.
A Jewish Buddhist Baptist, rudist
mutha fucka here this side a Judas
she said “baby you know we g’wan get through this”
then she’d play an etude on her flute. She’s a flutist.
– Kid Cooper Levy
R: Have you found any positive aspects of Tourette’s?
K: Just learning about myself has been positive. The Tourette’s is just a flag for my anxiety and that’s the real killer. Dr. Walkup talks about this. He says “Don’t get tic focused”. Tourette’s has the loudest bark, but it’s not necessarily the most significant challenge.
R: If you had the option to lose Tourette’s would you?
K: Not sure. Medicating is not the same as losing. I’d need to understand it better. As of now it’s just like asking would I like to turn down the volume on my ridiculously, obnoxiously, isolate-ingly loud anxiety barometer? And I’d say probably, but I’d rather not have anxiety then lose my ability to recognise it.
– Hottie Without a Body is a collage film that combines found footage with narrative story-telling. My analyst says this is a autobiography.
R: Alongside Tourette’s you also manage OCD, ADD & Anxiety. Have these been diagnosed as individual conditions?
R: Is it common to have grouped conditions like this around Tourette’s
K: It’s quite common, although I don’t have the statistical data on this. OCD, ADD, and Tourette’s were taught to me as a kid as being a trinity. Anxiety (and depression, which I don’t seem to have, at least in any typical sense) are also very common co-morbid conditions. I’m not sure if they are along side of or central to these first three, clinically. To me, anxiety feels like it’s at the centre of it all.
R: Have the O, A & A existed since the beginning of Tourette’s?
R: How do they work together?
K: Anxiety feeds them all.
R: Do friends or colleagues notice that you suffer from more than just Tourette’s?
K: Close friends notice I think. They all know because I’m pretty open about it.
R: How does your condition relate to your art?
K: I don’t know for certain. I know there’s a modern theory that there is no author, there is only the text. I disagree in part, I say that there isn’t a text either, not as a separate thing, and so if you can say there is a text, than you can say there is an author. In this way, I think you can take the creator into account, but you’d need to speak to a neurologist to get an exact answer here. I think about Chantal Akerman’s refusal to have her work ghettoised, as she didn’t want her work seen as coming from someone gay; a woman; a feminist. She wanted you to have to think about her film. Also, one of my heroes, Edmond Jabès, who said “I’m not a jewish writer. I’m a writer and I’m a jew.” I can’t find the quote, but I think that was it.
R: Tell us about your musical journey.
K: Sure, the album is very 90s MTV in these different styles. But although the 90s radio aloud diversity in what it played, each of it’s artists was expected to do kind of the same thing, except for our Smashing Pumpkins. I think the record comes more out of bands like The Mekons, Dylan, Smashing Pumpkins; again, personal experimenters, rather than pioneers.
You tell me Fibonacci’s code is written everywhere
You’ve seen in the sky, You’ve seen it spinning in the air
I looked for golden means beneath the golden setting sun.
Just see the golden lines a Highway 61.
– Kid Cooper Levy
R: How long have you been a musician?
K: When I was real young I played a number of instruments. I wanted to be famous, all that crap. I also liked songs a lot. It’s one of the ways my family bonded, was music, and lyrics.
R: Have you been in other bands?
K: The Terror Pigeon! Jesus Christ, I love that band.
– Terror Pigeon Live!
R: Best gig?
K: Tokyo! We had choreographed dances, and there was one section which was way too hard for any of us to sing, and then James figured, instead of giving into that out of breath feeling, “Maybe we should beat each other up during it” So, that ruled. Also, there was a show in Westchester New York where all our gear broke, so the three acting members needed to improvise a full acapella set. The audience was completely divided.
R: You were mentioned recently on the Huffington Post?
K: Yes, We released the single “Chicken and a Vegetable” – a unique love story involving a domesticated fowl and a consumable plant whose faces are smooshed together by the hands of God!
— Kid Cooper Levy’s ‘Chicken and a Vegetable’
R: You said “I have [tics] while on stage” How does Tourette’s interfere with music?
K: It doesn’t really. Again, the tics are fairly resent. They don’t tend to interfere with the music, which is common for people with Tourrette’s. But I noticed, last time I played, and the first time since moving back from the farm, that my stage banter was affected by it. It’s strange because talking and improvising monologues is a big part of my live show. Recently I went to see a Mr. Perrotta, who got me into a lot of the theatre and music I love, and kind of started me off on the path, as it were. He was doing Hamlet and I mentioned I have Tourette now. He said “Don’t worry, the show is Brechtian. [They’ll] have to deal with that.”
R: Would you say these conditions have given inspiration or created material for your music?
K: I wouldn’t actually. There are theories that Tourette is related to creativity, but I don’t know the ins and outs of it.
To live, to live, the things I’d give
To live and die like you
They say you couldn’t feel it
I don’t believe it’s true
To live, to live, the years I’d give
To seek that which you seek
If I only were that innocent
That stupid, or that weak.
– Kid Cooper Levy
R: How do you manage the tics when making/performing music?
K: Again, I’m like many other ticcers in that I don’t experience them at those times. I just wish I could have that sort of calm focus all the time!
R: Is it hard to manage all this and be a musician?
K: The hardest thing about it is the uphill battle of learning commitment and dedication. ADD and Tourette want me to loose my focus, and OCD wants me to hyperfocus, which demoralises me from wanted to focus ever again. If you want to learn to read music, or book a tour, it’s a lotta damn paperwork.
– Kid performed in Rubblebucket’s ‘L’Homme’, and was part of the creative team.
R: Have you been officially diagnosed by a health professional?
R: Did they prescribe medication?
K: Yes. I’m a late bloomer, superduper case. You know those shitty movies where the white guy learns kung fu quicker than everybody else for no reason except that Hollywood is a wasteland? That’s the sort of Tourette’s I have.
R: Do you / Did you take medication?
K: Yes, a number of things. Nothing was working. My psychiatrist was surprised, because we’d tried a number of things.
R: Have you seen a therapist?
K: I’m seeing an analyst.
R: If so, did therapy help?
K: Yes, but not with the tics. In Walkup’s system, you start with what is most debilitating and prioritise. So I figured the anxiety is the worst for me. But I will be going back to psychiatry and trying to find something to deal with it.
R: How do you best manage Tourette’s? (medication, meditation, yoga, alternative medicines, or something else)
K: The new big thing is C-BIT. I’d like to learn more about that.
R: How do you best manage OCD, ADD & Anxiety?
K: Serenity. And I’ve also just begun this series of videos on CBIT (Comprehensive Behavioural Intervention for Tics)
R: Do you feel as if you’re in control of it all now?
R: If you could go back and give your younger self some advice about Tourette’s, what would you say? What would you do differently?
K: “If it doesn’t stop at your station, it’s not your train.”
R: Do you tell friends, family and colleagues that you have Tourette’s?
K: Yes. But they’d learn pretty soon.
R: Do you know others with Tourette’s?
K: Yes. I was the first person I met who clearly had it, and that was 2 years ago. It’s very common, but not very obvious. But have met more since, and have gone to a NYC meetup.
R: How do you educate yourself on management and resources? Do you read specific blogs, magazines or news articles?
K: Walkup Walkup Walkup Walkup Walkup. Dr. John Walkup.
R: Have you read any great books about Tourette’s? Or seen any movies?
K: Not really?
R: Can you recommend any therapists / doctors / specialists / coaches / mentors / clinics / foundations?
K: Walkup! And TSA – NYC
R: Many thanks KID!
Rodger Hoefel in conversation with Kid
Cover Photo and other images from Kid’s Twitter & Facebook