Embracing Neurodiversity: An Artist’s Journey Through Creativity and Resilience

What does it mean to be truly free in our creativity? How do obstacles—both personal and societal—shape the way we express ourselves? In this episode, I sit down with Sara Henya, a Philadelphia-based composer, singer, harpist, guitarist, pianist, and music teacher, to explore these questions and more. Sara shares her journey as an artist, her deep connection to the Tourette Syndrome (TS) community, and her reflections on neurodiversity, resilience, and self-acceptance.

We dive into her experiences at the New Jersey Center for Tourette Syndrome’s events, the impact of music therapy, and the role of executive function in creative pursuits. Plus, we discuss the obstacles to creative freedom—both in general and specifically within the TS community—and how Sara has navigated them. 

Episode Highlights:

[00:22] Introduction – Welcoming Sara Henya and diving into her background as a multi-talented musician and composer.

[2:40] The Power of Community – How Sara and I met through the NJCTS and our work with the Tim Howard Leadership Academy.

[7:32] Songwriting for Change – The process of writing an Academy song with students and the joy of collaborative creativity.

[9:21] Tourette’s and Creativity – How TS forces innovation and adaptability, shaping the artistic process in unexpected ways.

[14:03] Healing Through Music – Sara’s personal reflections on therapy, trauma, and using music as a tool for self-expression.

[20:00] Breaking Up with a Therapist – The importance of self-advocacy and knowing when to walk away from unhelpful therapy experiences.

[27:43] Neurodiversity Within TS – Understanding the vast range of experiences within the TS community and how it fosters resilience.

[33:08] Coping Strategies for ‘Bad Tic Days’ – Practical tools and techniques Sara uses to navigate high-tic days.

[44:47] Creative Freedom & Overcoming Blocks – How self-doubt and executive dysfunction can limit creativity, and strategies to push through.

[46:01] Sara’s Upcoming Projects – A sneak peek into her Philadelphia Fringe Festival show and where to find her music and videos.

Links & Resources:

🌐 Sara Henya’s Website – www.sarahenya.com
📘 Facebook – www.facebook.com/sarahenyaharpist

Tim Howard Leadership Academy
 
 

Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.

Transcript

Sara Henya: 0:00

I think Tourette's forces you to be creative because you're given limitations or things that your tics want you to do in particular, and you have to learn how to work with the world that's designed already, and the way that your tics are forcing you to interact with it.

Michael Leopold: 0:22

Welcome to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research, by sharing the stories and experiences relevant to the TS community.

Unknown: 0:42

You

Sara Henya: 0:44

music. Hello and welcome back to the uptick. I am here today with Sarah henia, a Philadelphia based composer, singer, harpist, guitarist, pianist, music teacher, much more. And we'll be talking about her life experiences and as well as her creativity and the art in our community. Sarah, it's great. Great having you here today and looking forward to riveting conversation. Thanks so much for having me. It's great seeing you again. We've worked together for quite a few years at Tourette's events, specifically for njcts, which is an amazing organization. Oh my god, I cannot say enough great things about the New Jersey Center for Tourette Syndrome. Thank you so much for existing. Yes, so much the community, the the level of support. I mean you and I worked for years as a coach at the Tim Howard Leadership Academy for for high school students to help with with making those transitions from like childhood to adulthood. And such a great opportunity for for the students going through that. But I think more broadly, ngcts and the structure the community that it provides is really unparalleled. I just went to the summit, the family Summit, for the first time two weeks ago last week. It was great. It was like a mini Leadership Academy, but the opportunities that I had that I hadn't done before were working with kids who were pre teens and who are still learning about how to articulate what they're going through, and are so much more positive about it than teenagers can be about themselves. And also talking to parents. I've been very afraid to do this in the past because of my own experiences with my own parents and the things that I'm trying to prevent from happening to other kids, but now that I'm 30, it's seeing parents as my peers being able to make such a positive impact, and then to feel so listened to by parents who really want nothing but to be the best support system for their kids, that was really freeing. It is no there's something so therapeutic about even just going to these events, if you with with just to be a part of it and to get that, it's like you're with people who get it and and the vibe is right, and I don't know, just, uh, always a good time. Um, but, yeah, no, I feel like the Tim Hart Academy comes up in, like, all of my episodes, like, once we, like, give it a little shout out, but they've done multiple Tourette's programs as a volunteer. I've done Twitch and Shout in Georgia, which is a larger Tourette's camp that is basically for any kids from seven to 17 who want a regular summer camp experience that also accommodates what they need. I've done the patsa family camp, the PA Tourette Syndrome Alliance in years past, and then also the Tim Howard Leadership Academy. And while every program is different, they all give me so much joy and so much resilience that I can use throughout the rest of my year to feel good about myself and feel like I'm facing challenges. You see everybody else facing similar challenges to you, and you think, if they can do it, then I can do it. There is, and there's a sense of camaraderie with it, and a sense of, like, you know, you see those, those challenges, and then yours feel, you know, there's a way you can get through this. You're your own story. Work in your own pace, but like, you've got other people going through their their stuff, too. And, yeah, absolutely, really uplifting with that. I know you. So you made your first full length album, pop Goblin, probably, I guess, coming up on the two year anniversary here, right? It was January 2023, and then the three music videos you've made recently. I think that's how a lot of our community first heard your work. I mean, unless they saw you at a trade event or something, a lot of us were listening to your music and seeing that. What's the experience been like for you playing music for Yeah, I realized it was the world's broadest question when I asked it, what's it like making an album? But like, Yeah, I mean, oh, it's like making an album. Oh, I mean, it's, it's incremental progress over time. So you can't accomplish everything that you want to musically in a day. I think the way that the media portrays pop stardom is a meteoric rise, and it's just about like that. First I had to learn the things that I was most comfortable with, which is playing the instruments and singing, putting those together, being a good performer on stage and really just playing open mic night. Dance over and over and over again to get good at that part, being part of bands. But then the recording process is very different over time, gaining the equipment, working with others, gaining the knowledge to be able to do that on my own. So now at this point, I have a home studio where I record for other people. Frequently they'll send me tracks. I record something, I send it back to them. That's part of my job. I record samples for people to make beats with, for DJs and producers to use. It's a big part of my income. Writing for film. Somebody can send me a film, and I can work on it in my own home and send it back to them. I still don't know everything I need to know. I think that's the thing I'm I'm never going to know everything that I need to know. But the great thing about music is there's no one way to do it, and you don't have to do it alone. It's like eating a meal every day where you learn one new thing, and then over time, it becomes a buffet of things that you know, nice way of putting it, and I think also is a good perspective for people to hear, because this can sound really intimidating, like, I imagine getting into it, I would be impressed, just like reading your bio or something, and seeing, like, the number of albums you've made or something, and I it's a lot, and it's like, I think, to someone who is at zero, but interested in getting started. I think hearing the way you just said, that would be the would would be so motivating. Because, you know, don't mistake the big thing the end, what you're going to be in years. Don't let that stop you. And that's kind of our broader topic today around creativity and blocks to it that prevent us from from, you know, being free or create creatively. Oh, I also wanted to mention briefly, so at the academy, one of the things that I've done before, other than producing songs about monterret to to show I'll do songwriting workshops with kids. This past year, it was writing an academy song. So we wrote a song about the Tim Howard Leadership Academy. I came prepared with some chords and a bunch of lyrics that I wanted, and then they were able to help me brainstorm lots of different lyrics, and then I'll put them, all of the words that are relevant, up on a whiteboard or a chalkboard, and then we'll start using those words to input into sentences. And then we'll sort of look do the sentences flow together? I'll make suggestions about what I would change, and collectively, we come up with a whole verse, and then I recorded it, and we were able to put out a Tim Howard Leadership Academy. Saw Leadership

Unknown: 7:28

Academy ng CTS, the Leadership Academy, njcts, enemy stronger together, advocate for myself to make

Michael Leopold: 7:52

the world better. Oh my gosh, we're making music now. I love this. I remember we did a few years ago, the last year I think that I was a coach. It's been a couple years there, but the since I coached, you did like, a smaller version of this, this exercise where, I think we, like, maybe made a verse to a song, and you came in with, like, or help with making the chords, or, I don't think it was about the Leadership Academy. I think this was just another, yeah, you probably remember it better. I just remember being so like, well, one impressed. That was the main thing. Because the way you were able to, just, like, people would have an idea, or, like, for a line or something, and your brain just, like, took that and ran with it, and like, went in these different directions, like, you were so musically gifted, and it just seems very like, I don't know, like, an like, like an extra arm, or something like an extension of your body. It's so natural a language that I understand chords around and move. And I was like, Oh, my God, how did you do that? But so one, I was very impressed. But two, I noticed how engaged everybody was looking around the room, like as we were doing this, and, you know, ticks were dying down, except for when we got excited. And it, you know, it's not about just reducing ticks. That's not the goal here, but, but it was something I kind of noticed. I was like, people are really engaged in getting into this. Getting into this. And it was just immersive and sensory. Used our senses, and I really enjoyed that experience. And I think just just highlighted the importance of music and creativity in our community, and, you know, integrating that into our life, you know, I think that now that I'm thinking about it,

Sara Henya: 9:21

I think Tourette's forces you to be creative because you're given limitations or things that your tics want you to do in particular, and you have to learn how to work with the world that's designed already, and the way that your tics are forcing you to interact with it, I can think about all of the things that they teach in c bit, which is for those who don't know, cognitive behavioral intervention for tics. It's a type of therapy where you learn to identify the urge. That's what they call it, the pre monitory response that makes you if you can recognize when a tic is. Happening, and then be able to potentially create a counter response, to funnel that take into something else, or to be able to to make decisions about it, which doesn't work for everyone. I've never had it officially, but I think that a lot of people will creatively come up with very similar solutions and these coping skills for survival throughout their life, because you have to, as a person with threats, learn how to function in a world that is not necessarily designed for you. You know you had mentioned to me before about 2024, being a big year for you in terms of like making an effort to address the things that we don't want to address, and things like mental health trauma to the extent that you feel comfortable sharing, I'd love to hear a little bit about how you dealt with this, your approach to it, because I think there may be a lot that our listeners can walk away with. So in the past, I've had talk therapy and also have taken SSRIs, like anti anxiety medications, which I do still stand behind, but I decided that I would go to therapy twice a week with the goal of really sorting out some of the things that I was preventing myself from coping with, shoving really deep down and deciding I wasn't ready to deal with that I was going to make this a main priority of my ear, because if I didn't deal with it now, it would just still be there. And I'm I got really tired of it. I can't I can't tell you all of my trauma. I would say some of it is bullying, some of it is being in abusive situations. Some of it's disability related, but being able, I'm still working through it. I'm very luckily, found a great therapist, and just making a decision that I wanted to change, and now is the time that I would change, and I would look at myself honestly and accept the embarrassment and the guilt and the shame of what I wasn't dealing with. Stop avoiding it has made a really big difference, and now I have habits around it, whether this is feeling discomfort in a situation and pushing through to do it anyway, to give it a real shot, or deciding that I want to do it differently. I, for instance, I go play music weekly at a brewery near me, and there are some days where I don't want to play music, but I still want to go previous me would not go at all because I couldn't deal with the questions that people would ask me of, why aren't you playing music today? Now I my therapist would just ask me, Well, think about from here to there. Let's, let's play out the anxiety in your head. What is going to happen if you go and you don't bring your harp welcome? They might ask you why. And then you could give an excuse and say, Well, you know, you're tired, you don't feel like it. Is that an acceptable answer? Should that be acceptable to them? Yes. So say it. What's the worst thing they're going to say that they're disappointed. Well, you're still there. Aren't you good to talk to? Isn't you being a part of the community? Isn't that enough, right, playing through these scenarios and then testing that, going and finding out, is it that way? And it was fine going and not playing music was actually okay. Now I have that option that I never had before. Wow, so that's huge. That's wonderful. Yeah, it's really big. I can send you a little song. Hopefully I still have it that I wrote in the beginning of 2024 just for myself. It went something like, it's my year of healing, healing from what things I don't talk about because it makes me feel dumb. It's my year of healing, healing from who things I don't talk about because it makes me feel blue. And then the chorus is one of my tics, you don't know anything. You don't know anything put my tics in my

Michael Leopold: 14:03

art a lot. I love it. I love it. I love that we got our, like, a little sneak peek here on our podcast of the you know, your upcoming song, but that'll never be released. It's just for me. I you know, we use music in our own ways to, like, express ourselves and and go through life. And there's a beauty in that. But I think that, yeah, the way that people can manage this on their own and using whatever you need to to get out there, yeah, I mean, you mentioned, like, finding a good therapist that was that was right for you, and that that was key. And I think that's huge, that, like, finding a good therapist is something we might actually want to get your thoughts on just for a moment around that, because it's it's difficult, and I think it's easy to be put off by, like, having had a bad experience with a with previous therapists, and then, like being discouraged from finding more. For some of us, we can find one that's great right away, or get a good referral. For others, it is more of a trial and error process, kind of like treating tics.

Sara Henya: 15:00

And I think that can take different approaches different therapists, almost like vet them. You're almost like a therapist shopping. Yeah, that was my experience, absolutely. I mean, it's frustrating as a person who's struggling to then have an extra task of finding a therapist. It's sort of like a person being really ill and then having to also manage finding a good care team. It's like, can you really do both things? But I would say the things that I've had some bad experiences with therapists, the things that make for a good therapist, for me is when they ask me question and my answer is, I don't know, them challenging me to find what the actual answer is. Because I don't know. For me, doesn't mean I don't know. It means I don't know how to communicate that and being able to push through that barrier of why? What are the words? What is it that's preventing me from telling myself the answer to this question? So someone who's going to challenge me, someone who's going to remember what we've talked about in the past. Some therapists are unfortunately forgetful or don't take great notes, and it can be frustrating to bring them up to speed every every so often. So if your therapist never remembers anything that you say, that's maybe a problem. And then a therapist who when I don't know what to talk about that day, has really good suggestions on where to go, and is able to lead the session. For me, it's really helpful. I had a couple of therapists, one in particular who said that her secondary specialty was hypnosis. This is a horror story of a therapist, and she said that she could hypnotize me to not have ticks anymore. And then she saw my face that was very concerned and disapproving, and she's like, Well, it seems like you don't want to get rid of your tics. I was like, Well, no, I don't want to get rid of my tics. She says, Well, why not? I'm like, well, then I won't be special anymore, then I won't have this community anymore. Then I won't I won't be me anymore, which I guess was good in a way, for me to to recognize all of those positive things and to recognize that it was me who decided I wanted to keep it but also, what a horrible suggestion I know therapists to make that they could just cure you. If they just hypnotize you, just hypnotize me, and all of it'll go away. And from stigmatizing ticks to and like treating as a problem to be cured to just the simplicity of, oh yeah, it just takes, you know, hypnotherapy session like, yeah, yeah. Not how it works,

Unknown: 17:43

although, however, if there is somebody out there who did have a hypnotherapy session that did impact their tics in a way that they wanted, I'm very happy for you that that works. Everyone's different, and I don't want to invalidate anyone's experience, but that clearly wasn't something that I wanted, and I felt very offended by the suggestion, yeah, to each their own. And I agree, and I also think, like, the suggestibility can be helpful with hypnosis, in terms of, just, like, opening up about things that you might like otherwise have a barrier on, like, like you said, a therapist asks you a question and you just don't have an answer, not because, like, there isn't an answer, but because you can't, like, articulate the answer, or don't know you're not familiar enough with your mind to answer. I think hypnosis can be helpful for getting people relaxed and getting them into that more like suggestible mindset. It can help us unpack a lot of these deeper things. But quitting, breaking up with a therapist is very important, too. If you find that they're not the right person for you. You do not need to feel guilty about choosing to stop treating them huge. One in particular, I had told her about, I brought in my guitar, and I had written a song about something terrible that had happened to me. I played the song for her, and at the end she said, Well, you know, I'm wondering because you didn't have a fight reflex to fight this person, I'm wondering if you you maybe wanted this to happen. And I couldn't believe she asked me that, because what a victim Blamey thing to say. And immediately after that session, I never returned. I realized this person is not safe. They do not have my best interests at heart. They and I think that was okay for me to decide to leave. And you can also do that. If you're uncomfortable with the way that your therapist is treating you, you're not obligated to stay. No, that's excellent advice, because it can be hard to do that. Like we get kind of attached, and I think, like for me, like my need to please others kind of comes out, and it's like, I've got to know this therapist over however many sessions we've had, and yeah, you feel like it is, like breaking up with a therapist. And I do, I agree completely with like, taking away the guilt of that, because that's a part of your journey, your growth, and you don't owe them anything if you're not getting you know you're not getting the support you need hard to do. But.

Michael Leopold: 20:00

No, definitely done. Yeah, absolutely, but, but something that that, I think, you know, do it when you need to do it. This is why we train our community to advocate for ourselves, because we are the first line of defense for each other. No, it's, it's so big, we can't rely on, you know, others for that. I mean, if you have that support system that and that, that's wonderful. But I bring this up because I think I mentioned this in previous episodes. Growing up, I always had this idea where I didn't like to talk about my my Tourette. I would, I would love to do a speak about like I would publicly speak about it, talk about other people's Tourette. That's fine. And talking about Tourette as some like abstract academic concept. Love doing that. But if you ask me about my own tics, how it impacts me, how I feel about my Tourette, I didn't like to go there, and probably a lot was my own, just insecurities about like, internalized stereotypes of Tourette and what that said about me. It could have reflected about me, but I always had this idea that my I wanted the people around me, like my circle of friends, I wanted them to know that I had Tourette, and I wanted them to feel like they could educate others, or that they could, like, disclose on my behalf, or like, advocate for me, and like, there's a fine line there, I think. Like, if you have friends that certainly if they hear someone making jokes about you behind your back, yeah, I would hope my friends would stand up for me and be like, hey, no, he's like, got to write. Like, don't be a jerk. But like, expecting people to to help get you accommodations, if, if needed, or like, do that kind of work is is unfair to our friends and and also, I think, just kind of unrealistic for a lot of us. If you have a that kind of group of people around you that can do that, you know, God bless you. That's wonderful, but, but I think that was kind of naive of me as a kid, thinking I could do that. And it wasn't until, like, honestly, early adulthood that I started, like, like, genuinely, authentically, like, talking about my own Tourette and my own experience with it and trying to own it more. That was not something I had even when I was, you know, up giving speeches about it and fair, one of the ones I struggle with the most, and I'm trying to bring into my regular life is immediacy.

Sara Henya: 22:12

This is about living in the moment and being able to accept the things that are in front of you for what they are. This could be activities. So maybe you made a very clear plan of what you wanted to do during your day, and none of that works out. And now you have to immediately accept, well, actually, this is the person I'm talking to now, or this is the activity I'm doing, or this is what I'm eating. And I think as a neurodivergent person with anxiety, who is, I don't know, maybe on the autism spectrum, I'm not sure that can be really difficult to cope with, but as I get older and as I have more and more positive experiences of you know, actually, this is okay, and maybe I'm uncomfortable with it, but I can cope with that discomfort more and more as every year goes by. So now as I'm thinking about traveling last minute, I just have to radically accept anything that's coming my way. Is that something you want to share a little more about like you just your connections to like, how you feel about your trips, and if not, we don't have to go there. We have Sure, yeah, I think I can be sensitive to people's feedback, like I was saying earlier about songwriting as a, you know, I'm we're sort of on the age group where the cusp of public understanding was just in its infancy. So especially people I found to who felt that they were in power structures over me. So maybe this could be a teacher, an administrator, a Hebrew school teacher, camp counselor, a girl who was a little bit older than me, people who thought that I was lesser in some way, they decided that they could comment on my Tourettes in a negative way, pretty consistently. And so I was consistently told as a young person, well, once I even figured out that I had Tourette's very briefly, my unique Tourette's story is that my older brother, five years older than me, he has Tourette OCD and ADHD was diagnosed very young, so my parents did the best that they knew how, and pretty heavily medicated him, which he did not tolerate very well. So they decided, reactionary, to do the complete opposite approach with me and not tell me what Tourette's was at all. Never mentioned the word. So growing up, I had no vocabulary to describe or understand what I was going through, and no awareness that that was what I was doing. So I would be told to stop ticking by my mother, and I would say, Well, I didn't even know I was doing it. But then once I could figure out I was doing it, I would go, Well, like I can't, we just stare at each other in this dance of will. Finally, it became so frequent and so noticeable that I had to get a diagnosis. I learned what Tourette was from that HBO documentary. From 2004 or something, I have to read me yeah, great documentary that kids were my age. I had this big aha moment, and then I had to come out to my parents as one, knowing what it was, and then deciding, yeah, this is what I have. But at that time, I it had been so ingrained in me that what I was doing was attention seeking behavior or that it wasn't real, that I could choose not to. I never really got the confidence within myself to tick freely and openly without without fear, especially I had loud tics. I was hitting walls and myself. Teachers were very mean about it. I almost got fired from a job because of it, not because the tics were particularly bad or disruptive, but because people didn't want to accept it, and because it was clear that I was uncomfortable with it, people found that they felt like they were allowed to be uncomfortable with it too. So I had one Hebrew school teacher, for instance, who would laugh at me every time I did a tick. So I told my principal, please tell him to stop doing that. This is what it is, and it just didn't change. There wasn't really anything I could do difference. So I made it my mission to negate everything that he said in class when we had philosophical religious discussions. We were sophomores in high school at that point, and at the end, they rewarded me for being participatory in the class, not realizing that what I was doing was or maybe they did realize it, and they thought that that was a great thing, I don't know.

Michael Leopold: 26:40

Yeah, that it was actually just, it was a reaction, a way of standing up to that teacher who was just laughing at tics. I mean, I think the the whole like, tick freely movement, is something I've been really excited about, because it's such, it's just like two simple words, tick freely. But it's, it's groundbreaking, and because it's like creating a world where that feels like we're at Tim Howard Leadership Academy or at a conference, where you really, you know, the goal is where it isn't stigmatized. And I think for those of us that grew up in a time where Tourette is like, yeah, what was was even, even less understood by the general population, that that idea, at least for me, was like, huge, like, oh, we could, like, we could build a world where you could just kind of tick and it's not a big deal. No, people don't, you know, and I want to talk more about, like, being neurodivergent in a neuro typical world. And so much we could say about that, I'm sure. But the ways that people make that work, you know, as we slowly transition to a world that is more neuro inclusive, some of the ways that we can do that. But what does neuro diversity mean to you?

Sara Henya: 27:43

In the Tourette's community, it's so important to recognize neuro diversity. So there's neuro divergence, which, of course, means you know, divergent from the norm, which has connotations that some people can feel offended by, because what is normal. But then within that, when you think about a person with Tourette's, Tourette's might not even be one singular condition. It's just a set of symptom descriptions that we all seem to have. And then beyond that, no one just has Tourette's. They always have some form of comorbidities. And how many people do you know with different combinations of things or different comorbidities that you don't have or maybe have never even heard of you and I have worked together at the Tim Howard Leadership Academy, and before that, I had never even heard of executive dysfunction disorder, which makes so much sense now that I hear about it, I can I can see it in my brother, I can see it in myself, but I had never even thought of that, or I remember hearing that so many people with Tourette's have OCD. That's not the case for me. I don't have OCD, but I do have anxiety, which has a lot of similar symptoms or similar ways of behaving. I think being able to see the diversity and see the similarities and see the differences of our comparative experience allows us all to learn from each other and to come up with coping strategies that maybe are geared towards one particular population, but are cross culturally. If I can use that term, beneficial for everybody, it's interesting. We often when we think about like neurodiversity, I kind of like lump Tourette, the Tourette spectrum somewhere in that but I often overlook something that you just said, which is that, like within Tourette and our world, we have a like rainbow of neurodiversity, just within our community, because of the different kinds of ticks we can have and and CO occurring conditions and all of that like it is, like neuro diversities or something, just because of the the variety of it that you can get, even within a one group, like just the threat community, Rhett in particular, is such an individualized experience. Yeah, similarities abound. But, but. Everybody's tics are their body's way of reacting to a similar problem. So maybe a lot of people blink, but not everybody does. Do we it's true, because especially, like a lot of my, tics feel very core to me. I've always, always, always had, since elementary school, had a tic involving, like, putting my my hands in front of my face and doing some kind of movement, like with, you know, around my nose area I always, and it's evolved over the years. But like that tic feels very, I don't know just like, very core to me, just me, because I, like, I just know it so intimately well. But there's something about that, like, even in there are certain jokes that trigger certain tics. Like, it feels like an essence of me, like the the environment where I do certain tics. It's like, Oh yeah, that that's me I'm gonna take care like, or I'm watching a movie and there's a scene and it's like, there's, like, a happy moment. So of course, I, like, get excited, and I do a little tick, but it's, I don't know it is. Yes, it's a very core part of me, because I've had it, you know, for so long. But it feels like almost an outlet of my own. I my own sense of self or something feel like this individuality. I've been continuously trying to reframe for myself as a positive, whereas, especially when Tourette knowledge was a lot less common, the Gen the world at large, would try to see it as a negative, where you don't behave like somebody else I know with threat, or the thing I've seen on TV with Tourette, so I don't believe you, or I'm not going to accommodate that, or I feel like that's attention seeking, or all of the other negative things that people would tell me. And then having big shifts throughout your lifetime and having to re accept different parts of yourself, different ticks that are coming up. I didn't get coprolactic Cursing ticks until I was 1819, years old in college, and having to accept that transition. But then that came along with the reduction of a lot of self injurious tics, a lot of the more larger physical tics that I had, and being able to be adaptable in that way, the diversity within yourself,

Michael Leopold: 32:05

because it does change a lot. Yeah, as going through life, I've talked to a number of people who said that their their corporate emerged, like early adulthood, like 1819, or so. I that was something I only learned within the last few years, that that happens. You know, you can always assume that, okay, maybe around like, maybe almost around, like, puberty or so, 1314, whatever it is, but, but, like, yeah, that that is something I think maybe we could explore a little more, not you and I, but just like scientists or the people looking at this, because at large, met a handful of people now that said their corporate leaders actually started when they were around 18 or So. That's so interesting. I wonder if the something about the maturing of the brain has relevance. Have you found as you got into your like, mid to late 20s, and you're in your 30s now, any what kinds of like, overall changes with Tourette, or, I'm speaking more Tourette, less so anxiety, because that's all you know, that's that's a little bit of a different animal, but the ticks and stuff. Does it stabilize? Are you one of the lucky ones where it gets a lot better?

Sara Henya: 33:08

Yeah, so I will say that I have seen a reduction in the frequency of my ticks. I do tick less often than I used to, but there were periods where that reduction was really happening, where the urge would still be there to tick, but not enough that it would bleed over into a tick actually happening, and I would feel very stuck within myself, very claustrophobic that I know this feeling, I know what I have to do, but then actually doing the tick would feel like forcing it, and I wouldn't Get the satisfaction from it. That was incredibly frustrating. I think I've experienced that too. You just, I like the way you just, you articulated that because, like, I've had that and have not been able to put that into words. That that feeling. How do you explain that to somebody else, where you're having this very internalized experience of discomfort that someone else is not going to understand? And you want to say, I'm really struggling right now, but it all of that struggle is internal, yeah, you can't, you can't see it. I've had these moments, yeah, where? Where it's like, I'm getting a little bit of a pre monetary urge, just a little bit, and then, like, I do the tick, and it doesn't get rid of the urge. It's just like, I don't know, or, or I, I get a subtle urge, and I don't actually, like you kind of said, it doesn't rise to the level where I have to do the tick and I'm just kind of left with this, like, I don't know, like ants in my pants, or whatever kind of feeling. It's weird, but I've noticed that that that as well as I think especially as I've gotten older, I will say, over time, my sentences have gotten longer. So maybe it just started with F word, and then it became Fu, and now it's like a whole sentence that has stuck with me for years and years. You don't know anything, you're effing dumb. And I think people can sometimes be surprised with the length of that, especially because when I was younger, I feel like I had more of a tick voice, and now it just. Sounds very much like my regular speaking voice, and you really have to know me and know contextually which thing maybe it didn't make sense in that sentence, or that's not something I would normally say. Oh, I have this one that started this year. It's anyone who's been in the fires recently. I'm so sorry for bringing this up, but the tick is you could die in a fire. Oh, yeah. And I do have some friends who have been in house fires, and I always have to warn them when I'm going to be saying this tick, when I feel like this is a day where it's been occurring, I don't, I don't know why. But isn't that just the way with Tourette's, you just, you don't know why you do it. We don't know why. And there's also, like, if I were in a room with someone who I knew might be like that affected by that tick, it just my brain's like, Aha, I'm going to make you say it even more like it just gives you that. Or like it becomes sort of a thing where almost the taboo, stigma around it amplifies it or triggers it more in yourself, I find that a lot. But what do you do on on, quote, unquote, bad tick days, sorts of coping or things that you find help you with, just just getting through those moments. I do a variety of things. I'll say I sort of have, like, a box of coping mechanisms. Now, in my youth, this was like a literal box of things that I enjoyed, like bouncy balls or my this favorite doll or something like that. It's put on my favorite shows. Get in my comfiest clothes, because, oh my goodness, if you're wearing the wrong thing, yes, yeah, that's so true. Oh, One helpful, making sure that I'm scheduling break times for myself, or removing myself from the situation altogether if I need and giving myself Grace about this singing really helps me. And then sometimes it's things that I feel embarrassed about asking other people like, Hey, friend that's hanging out with me, will you read something to me so that I can really be focused and distracted in some way while this is happening. Have something else to think about. Yeah, that last one is huge for me. I find, um, talk. For me, it's more talking to someone. I don't take when I'm, like, in a conversation with someone. So I'll just go, like, ask my partner or somebody like, hey. Like, I just, I need to talk right now, and we'll just, like, it's anything to get. Ideally, I can't, I can't just be listening for me. I need to be, like, also talking as well, producing something words, but, but that is, like, it just helps, kind of get my mind to a different place, and, you know, or helps, or even just, like, emotional regulation, because so much of our tics aren't they're not just like random bouts. They can come with, like, the ups and downs of your emotions throughout the day. So getting a change of that can also, you know, help if I'm, like, feeling really amped up or something just kind of calming down in some way, can can help, I would say, pulling out, um, things that are safe for me to destroy, that aren't going to injure me in the process of destruction. So if I really need to be punching something or hitting my head against something, I might pull out a yoga mat and place it against the flick the wall, and then a pillow, and then the yoga mat, so that I can still feel the firmness of what's happening, like a pool noodle, for instance. Those are soft, but super firm, and I could punch the heck out of those having the tools around to do the TIC anyway, without the consequence of doing the TIC is really important to me, especially having been injured so many times or having had surgeries because of tics. I think having the freedom, it sort of calms me to know that there is an option for me there to do it, even if I don't end up doing it this point in my life, I would say I can't think of a single person in my immediate circle or extended circle that has any issue with me ticking everyone's okay with it. The only one who's not okay with it is me, and it's going to take me some time to come around to accepting that this isn't my reality anymore. I don't have to be for I'm getting emotional thinking about it. I don't have to be afraid to tick freely, and that what it it happens regularly. I say the same things over and over again. They're gonna come to expect it and know what what it is. They know what it is. I don't have to be worried that they're going to accuse me or or or make me leave, or not give me an opportunity, but I feel so embarrassed of myself, I think that's one of the things that I've been really working through with past trauma, is accepting things about myself and my past and who I am not being embarrassed of myself, because no one's telling me that I need to be it's just me who's telling me that we're our own, sometimes our own, biggest critics and but that's because that's for a reason, like, you know, in your case, being like your childhood growing up with this, and you tell that to a kid enough times, or have teachers laughing at their tics and just that. That gets instilled in you, and it's hard to break free of that, or how to you know, but like the brain is is plastic, and we grow and evolve as people, and we can change. And we do, we do change. Want to get some initial thoughts, and this will be a topic we can keep revisiting and coming back to. But any initial thoughts you have on like obstacles to creative freedom within within our community, especially, I mean, I think it's honestly a universal problem, and probably more specific for people who have TS or similar comorbidities. But the idea of feeling like you're going to fail, not being excited about the product that you're going to make, and is the product even important in the first place, what's the purpose of why you're doing it? If, if you don't have a reason that you're doing it, maybe it feels hopeless or overwhelming, like there are a million questions. Where do you even start? I think learning about executive function and being able to prioritize the and figure out what are the steps that we're even doing? Where do I put them in a priority list of what goes first, how much time do they take? How much effort do they take? What am I even trying to do? And then, if I don't know something, where can I find the answer to that? All of those questions go into literally doing anything. But I think especially for something creative where the goal is to make something completely of your own volition, those can be end questions that end your process before you even begin. One thing I notice a lot is it's daunting to, like, realize all these things I have to do, and then even if I do try to apply some executive functioning skills, and I list out, okay, here's what I need to do. Here's a timeline. Now I'm just stressed out by by this like monster of a project that I produced. And what I find, I think a lot of people may be able to relate to, is just like the paralysis that can come with that of like getting started, like I need to do something, and one thing, one kind of mantra I've learned with I run a career coaching business, and one mantra I've, I've learned, the just struggling through the process of being an entrepreneur, is do something like a little bit. Like, don't think of the massive project. I guess it's the whole like, how do you eat an elephant one bite at a time? Thing, but, but it's true. Like, I think, do any little bit if I'm in the mood to do this one topic, like I'm absolutely gonna go do this one thing, or think I start with what I do know and what I'm most excited about in the process of songwriting, especially, that's what I'm most familiar with. There is a lot of different directions that you could take it. But what am I most excited about for for a song? Maybe I'm really excited about figuring out a particular feeling. So I'm not going to think about, how am I going to record this? How am I going to disseminate it? How am I going to perform it? Those questions might be too large or beyond my scope of ability. Or how am I going to create an entire song? Maybe I just start with, well, I have some words and some feelings that I'm feeling. Let me write down the words, or I'm just gonna play my guitar and find some chords that I think sound cool to me, or maybe you're not even there yet. There is so much that can be done with it. So I understand you're producing a big theater show this upcoming September. Could you share a little more about that? Sure. So the Philadelphia Fringe Festival. There are many theater festivals called fringe festivals that happen all over the world. In Philadelphia, this happens in the month of September. I had the opportunity in the past to score a live theater show with harp and also be an understudy in one last year, but this year, I'm producing a theatrical concert all about collaboration and songwriting, and it'll be a mix of drag and silliness and costumes, some set pieces and prop work, but mostly myself and a bunch of other artists in Philadelphia, collaborating on songwriting and writing songs about our experiences and really whatever We want. Between now and September, there's going to be a lot of evolutions that the show will go through, and I'll be able to get more specific details. But some of the ideas are, what if we did a song where everybody started out on one instrument and then we slowly move one instrument to the left every every verse, Oh, wow. Or what if we had a trash can full of props that are personal to us, and we pull things out one at a time, and we talk about them. What if we have a song where we talk about all the times we've been scammed in the music industry, those kinds of things this? This sounds like such an eclectic mix of like, I would be very entertained. I am excited for this. Is this how long is the production gonna gonna run? I'm we're looking at three or four nights, I'm not sure exactly, but, but that's for for a friend show. That's quite a long run. Oh,

Michael Leopold: 44:47

wow, that's exciting. I imagine there's a lot in there that that, yeah, that you've been up to in terms of just getting ready for that. I think a lot of people don't realize how long these things take to produce even something going into September. I'm definitely more familiar with the. Music side, and so I'm really learning a lot of this theater stuff on the fly. But I think that I'm just one of those people who has the audacity to say that I'll do anything that I put my mind to, and I'll just figure it out. If I don't know how to do it, I'll ask somebody, I'll figure it out. Wow, what an attitude I mean, hard to do. I find, I think one of the broader topics that you brought up the idea of, what are the obstacles to creative freedom? How are those obstacles more specific to us in the TS community? And I think we're almost touching on some of those right now, like the comment on on self hate being a barrier to us and Our like creative expression and

Sara Henya: 46:01

do, if you like what you're hearing, she can do a lot more. Feel free to check out her albums and and pages. I will actually put this in the the notes for this episode so you can get her links and handles. But Sarah, do you want to share some of the names of of where people can find you? Oh, sure. Um, so I would say the the two best places to find my music and content are any streaming service, Spotify, Apple Music title, whatever you use under my name, Sarah henia, I have my album pop goblin within a couple of previous projects as well an EP called Small World alchemy. That was my first project. You'll definitely be able to see the growth between the two and a couple of singles as well. But then on YouTube, I produce these very cinematic music videos that I spend a lot of time and thought they're mostly fantasy related. And there are a couple videos about Tourette's on my YouTube channel as well. And then on social media, my two most used accounts are Instagram and Tiktok, and they're very easy to find because they're just my name, Sarah henia. Make it easy. Yeah, Sarah henya, h e n, y, a for the last name, and check out her content and music. Really great stuff. Definitely someone you want to

Michael Leopold: 47:15

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