Empathy in Action: Navigating Nursing with Tourette's - Jillian's Journey

In this episode, I interviewed another TS advocate, Jillian Firenze. Jillian has been a coach and a nurse at the annual NJCTS Tim Howard Leadership Academy. In this episode, we discuss her childhood growing up with TS (and having siblings who also have TS), her work as a nurse, what inspired / motivated her to become a nurse, what tic attacks are and how to handle them, and general insights on supporting youth with TS.

Episode Highlights:
[00:45] Finding her calling in nursing after caring for sick family members.
[05:09] Supporting her younger brother who was also diagnosed with TS.
[08:38] Struggling to accept tics until having a breakthrough at the Academy.
[10:32] Describing intense tic attacks and compassionate ways to respond.
[15:31] Finding moments of self-care while coaching high-demand roles.
[19:38] The tricky balance between supporting and triggering someone's tics.
[22:43] Battling recurrent depression alongside TS in adulthood.
[25:08] Uplifting others to embrace their true selves and never give up hope.

Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

Transcript

Jillian Firenze: 0:00

I've seen ticket tax before, but the academy like was the most like intense. Like I've seen ticket tax. It's like a full body workout pretty much like you can't stop it, no matter. Like you cannot pull down the person to stop it like they have to physically get it out of their body. In order to get that urge, away, like there's no stopping a tick attack, you can comment down as much as you can. It's just a complete loss of control. Pretty much your body just needs to get out all the ticks in your body that you've been holding in or suppressing excitement or over sensory, all that that just needs to come out.

Michael Leopold: 0:45

Welcome to The Uptic 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. Welcome back to the uptick. I am here with Jillian Firenze, a registered nurse in Syracuse, New York. She's been a coach and a nurse at the NJ CTS, Tim Howard Leadership Academy. Jillian, I've known you since 2016, when I first became a coach of the academy, and what always stood out to me was how patient you were with the participants. You had this unique ability to see each person as an individual and give them individualized care, you could quickly and calmly pivot from helping one student to helping another student with very different needs. And that's especially important in in our community where TS is idiosyncratic, we can have a diverse array of symptoms. So this is an episode devoted to sharing your story. I'd love to start with how you got involved in nursing, what inspired you to become a nurse.

Jillian Firenze: 1:56

I think it started when I was little, my mom always said that I was like that person to take someone off the streets and give them the shirt off my back. And I would always be the person willing to help anybody no matter what their story was, if they were mean to me, no matter who they were, as a person, like I would always be that person to step up and help anybody. my college career did not start as nursing. It started as computer forensics, because I watched too much TV and I wanted to be Garcia from Criminal Minds. And then I quickly learned that it was not like that. And then I went back to my roots and decided that nursing was what I was meant to do. And it came after my grandpa got sick. He came in he lived in Boston, he was on hospice, and I helped to take care of him. And I was like, This is what I was meant to do in my life. And I quickly went back to school and I got into nursing and this is where I am today.

Michael Leopold: 2:58

It must bring you a lot of joy. Just see when you could help someone like that and take on the caretaker role for someone. What is it that you you enjoy about nursing? What do you think really speaks to you? Is it that it really satisfies that inner desire you have to help and be kind to care for others? Or is it something more than that?

Jillian Firenze: 3:18

You definitely get to connect with people like on a different level, you get to build that trust factor with them even the most scared person in the world, they will literally crumble to pieces and connect and have the most like, trust factor with you and tell you things that they've never told anybody before. And I feel like that is like the most amazing experience and you can just like leave your shift at the end of the day knowing that you change someone's life and while ours that in like a lifetime of that person. They've never told anyone that before like they've never felt that comfortable. And in 12 hours you were able to like transform that person's life. Wow.

Michael Leopold: 4:01

What kind of NURSE Are you?

Jillian Firenze: 4:02

I am a labor and delivery nurse

Michael Leopold: 4:04

What drew you to that sub specialty within nursing. When

Jillian Firenze: 4:09

I was in school, I was a nursing assistant and I did postpartum so I worked with moms and babies and I loved working with moms and babies. And for a little bit I did postpartum and labor and delivery and then I just loved the field of bringing babies into the world and helping moms overcome that and go from the transition of being pregnant and into motherhood in the first like few hours of becoming a mother. It's just like an amazing experience and like seeing their transition and then going from fear to overcome with joy in love with a baby is just amazing to me is inspiring.

Michael Leopold: 4:53

Can you think of anything in your childhood or the family dynamic you grew up with that helped you become Um such a good nurse, any kind of transferable skills there that you find you you use or things that you learned as a kid, you are an older sibling, you have younger siblings, right? Or a brother of one

Jillian Firenze: 5:10

younger brother, who I was six when he was born. And I said that he was my baby. And I carried him everywhere and changed his diaper and fed him and all that stuff took care of my grandpa. And I took care of my grandma when she was on hospice as well. So like, I definitely had that caretaker role growing up. It sounds like

Michael Leopold: 5:31

you was very unique. Yeah, like you just kind of always had that it wasn't taught to you didn't pick it up somewhere. That's just who you are that desire to help others. There's something really beautiful about that. When did your Tourette Syndrome start? How old were you?

Jillian Firenze: 5:45

I was six or seven. So my brother was eight, and he was diagnosed. And then it was a few months after I started showing my texts, and my parents were like, Why are you mocking your brother? And I was like, I'm not. And so was the joke for a little bit. Like, Stop mocking your brother stop looking for attention. I was like, I promise I'm not. And they took me to the neurologist and they're like, Nope, she asked her not to,

Michael Leopold: 6:15

that had to be a big awakening for your parents within the span of a year or so the two kids both of us.

Jillian Firenze: 6:22

It was definitely like a struggle. And my brother too, because they knew something was off with my brother for years. And they couldn't find anyone to like, realize that until he was in like fourth grade with our teachers. Like it's not just him being a boy like there's something more than that. He finally was able to get like a set diagnosis of Tourette Syndrome. So I feel like if he was diagnosed earlier than that, then it would have been a little easier for my parents to not have two kids diagnosed with Tourette Syndrome within the same year. Yeah, I

Michael Leopold: 6:54

bet. And what's it like being the older big sister to someone with TMS he

Jillian Firenze: 7:00

was five when he was diagnosed, his started out very mild. And then his grew to being more intense, like vocally, it was like a hard adjustment for him because I feel like he thought that he missed that period of like, tics. And he thought that he didn't have that period of tics where he was going to be having the outburst. And then when it did happen, it was like a hard adjustment for him. And it was like, Oh my gosh, like this is happening to me. So I had to talk to him. It was like it is okay. It does happen. You're not alone, like it's gonna get better.

Michael Leopold: 7:42

Has that mentorship kind of relationship? lasted over the years, especially as he's going through middle school or high school where you guys always close and you were able to support him? Oh, absolutely. Yeah, I imagine that it takes the edge off having a diagnosis like the at preventing the bullying, to have someone who gets it, I'd older siblings, I imagine that made his life a lot easier to

Jillian Firenze: 8:04

have. But my older brother was definitely bullied in middle school because of his Tourette's. I was very fortunate to have very good teachers that were very supportive of me and gave me what I needed. My little brother definitely had the personality to not care what anyone thought. So he really didn't have an issue with anything. And

Michael Leopold: 8:28

you personally, what was your relationship with your Tourette growing up? Was it something that really bothered you? Was it really prevalent growing up or talk to me a little about your story there?

Jillian Firenze: 8:38

What was very prevalent growing up in it? Definitely, in my early like middle school ages, it definitely did bother me, I would say until my first year at the Academy when I was a participant that was when I first came to realize that like it was okay with who I was. And like my parents would even say, the year I left the academy, they could definitely see like a huge competence with me being okay with who I was, and not caring about my tics and who saw them and all that I had to miss like a few weeks of school and like middle school because my tics are so bad, like vocally and I had lots of internal tics where I would be like rushed to the emergency room because I thought I had like appendicitis and it would just be like, I was turning my internal organs and like they ended up being bruised and just like lots of self affliction, tics and internal texts, lots of vocal texts that definitely I was not comfortable with myself until the academy. Yeah,

Michael Leopold: 9:38

we really do a great job, I think at the Academy with helping people embrace their own skin and who they are. I went through that same journey. I was already an adult when I speak to my coach, they're 2016 and I got as much out of it as the participants. I am convinced the programming there is was relatable, the experiences of the other coaches seeing what they went through Having that support system, there's mentors and potential role models all around you. A really was an inspiring opportunity. At the time, I would have been my first year at the academy. I think it was 2120 22. I think so. And I got a lot out of that. That leads me to another point where you may have an interesting perspective as a nurse, especially a nurse who also gets to yes, we've had some instances at the Academy of TiC attacks and participants that had tic attacks. Can you explain to our listeners, what it took attack is what it looks like.

Jillian Firenze: 10:32

So Tic Tac is a complete outburst of texts that can be motor vocal, full body. I've seen tick attacks before, but the academy like was the most like intense, like I've seen tick attacks. It's like a full body workout pretty much like you can't stop it, no matter. Like you cannot pull down the person to stop it. Like they have to physically get it out of their body. In order to get that urge. away. Like there's no stopping a tick attack, you can calm it down as much as you can. It's just a complete loss of control. Pretty much, your body just needs to get out all the ticks in your body that you've been holding in or suppressing excitement, or over sensory, all that that just needs to come out

Michael Leopold: 11:25

that it sounds like it's caused by overstimulation. Any other warning signs or triggers for it. over

Jillian Firenze: 11:34

stimulation is definitely probably the biggest one. Other people, they can just slip come out on the blue.

Michael Leopold: 11:40

Yeah, the one in particular, I'm thinking of that I had seen person was just lying on the ground, lots of twitches and movements and all like all of the checks happening at once. It look, you know, a stereotypical seizure in a way with the way that the movements were happening. I guess, the way you handle it is similar to that in that make sure there's no nothing around where people can hurt themselves. But you can't really stop it. These are texts, you let them happen, you get them into a safe place. I think one thing we we did as you got everyone else away, because you want to reduce that stimulation, you want to reduce the stimuli all around them. So if you have 10 people standing around someone who's having a tickets act, that's not going to be good for them. That just keeps them stimulated. So get the people away, get them in a safe kind of area, but it will pass. This could be anywhere from how long? A few minutes, or how long does it tick attack last.

Jillian Firenze: 12:35

It can last anywhere from 30 seconds to a few minutes, it can last some people. There's a girl that I follow on tech shock and her take attacks can last like a few hours, she literally asked to take a nap for a few hours just so her body can rest because she's just completely exhausted.

Michael Leopold: 12:55

It must be physically and mentally so exhausting to have to do that. How would you handle one if you saw a tick attack happening as a nurse, what's your response, making

Jillian Firenze: 13:06

sure that they are safe that they are in an area that if they are losing control, that they're not going to hit their head on anything. That is they start flinging their body around and anything that there's not going to be anything that they can hurt or injured themselves on that there's going to be no one around that they that can get hurt, that they just have like the support that they need there to know that they are allowed to tick. They don't have to stop whenever they're ready like making get up.

Michael Leopold: 13:38

The you've been the nurse at the gym, Howard Academy for how many

Jillian Firenze: 13:41

years? Was my second year this past year? What's that experience? Like? It is very empowering. I feel like you get to know these kids on a different level than the coaches do. The kids definitely come to you for more things and tell you more things. And they do the coaches, they trust you with things and they just have a different relationship with you. So like a coach they see as like a friend kind of because they do like a team talks to them. They have like the fun sessions with them. Then they can array as my biggest example, like they'll do the team talks. And then Ray got up and dancing in the tail. Sounds like Right, yeah. And then there's me where they can come and they can have like a serious conversation was not that like team talks or I'm serious, but then it's like on a whole different level that we can just completely get away. We can go into my nurse's office type thing, whatever you call it, and they can completely decompress. They can get off whatever that's on their mind and it's like on a different level that I'm not gonna go back and tell any of the coaches what's happening and it's like completely confidential on a different level. Then the coaches

Michael Leopold: 14:54

you know, when I when I'm a coach at the Academy, and I see what you're doing, it's so impressive, like the way you just bounce from one participant to the next, each person scheduled for medication and what their needs are. And now I'm hearing also people confiding in you that level of trust, they're telling you things that probably in some cases are weighty, big, significant things that you then bear. How do you mentally decompress? How do you stay energized, focused, given the demanding work that it takes to be a coach it at the end, that kind of environment, definitely

Jillian Firenze: 15:32

take advantage of downtime at the academy and take lots of breaks in my room, all of like the rock times, I'll go outside. And I'll do like, the outdoor activity, because that's just how I get away like any of the sports is just like how I get away, take lots of naps, I'll take extra showers, because that's just like showers are very, like soothing for me. But I'd definitely just find different ways for me to like, get away, decompress and take advantage of like the extra time that I have, and downtime. And when I'm at the Academy, I don't really sleep either. My phone is always on. And there's definitely been times that I am called in like the middle of the night because I've had to like go do something. And so I definitely have to take advantage of naps throughout the day, too.

Michael Leopold: 16:18

That's got to be tough, because I know I don't get enough sleep when I'm at the Academy coaching. And I can't imagine like not sleeping or very little sleep at all. That's a marathon to get through. But you do that very well. How about your own ticks as an adult? How are they in general? I'm sure they get worse when we're at the academy. But what what's your experience with ces as an adult?

Jillian Firenze: 16:38

I have a very good handle on my tics right now. I feel like they're going to be ramping up a little bit this year. I get married this year. So they're gonna be

Michael Leopold: 16:49

congratulations. So I saw that I saw the post on social media, you and your partner, you guys look great together.

Jillian Firenze: 16:55

Thank you. The definitely amping up this year's like things get closer. But right now and like today, they're very, and they've been very good. And I'm very fortunate to like work with like a group of people too, that are very accepting of it. They ask lots of questions. There'll be like, hey, like, I have a question for you. And I'd be like, what's up? And they like, want to be educated on it. Because they're like, if I ever come across this or like, if I have a patient with it, or like if you do something like I just want to know like how to handle this. I'm very fortunate to work with like a group of people like that. But my tics are good. Well, I'm happy

Michael Leopold: 17:35

to hear that. And also happy to hear that you get to be an educator for other nurses and professionals in your field. I'm curious, what kinds of questions do they ask? Here's a recent question you you've been feel that I'm about to pass from another

Jillian Firenze: 17:49

nurse. They asked, Do I take in my sleep?

Michael Leopold: 17:52

I get that one too. I get that too. Yeah, everyone wants to know that one. It's like, I don't know, I don't watch myself sleep out. I know. Then

Jillian Firenze: 17:58

they asked her like distress make your tics worse. They're like, if you are taking like, do you want us to acknowledge it? Or do you want us to ignore you? And then they're like, when we do here, you're taking like, does that mean you're upset? And I'm like, No, it doesn't mean I'm upset. Like, it's just me taking. And then they're like, well, on days that you're taking more like, are you okay? And my guess I'm okay. It could just be a bad day or something like that. Like when my texts. So like, they're very, like logical questions. Yeah, those make sense. I have a patient who has Tourette's. And they're taking, like, how do I handle that? And I'm just like, well, I've never had a baby. So I don't know. And that situation, but ignore them pretty much unless they want you to, there's

Michael Leopold: 18:42

this super elusive like balance, I feel like between in our community of between, like you, people who don't have treads, especially they want to be supportive, and they know that stress, excitement, fatigue, all these things make our tics worse. So when they see us ticking, they assume oh, there's a reason you're ticking. What can I do to make it better? And then the challenge is like, like, select, that's great, I get it. But the challenge is then even bringing up the fact that I'm ticking more now I'm self conscious. Now I'm going to check even more because I know you're thinking about it. And I'm racking my brain to think okay, what's bothering me? Why am I anxious? Why am I like ticking more? And sometimes there's a reason sometimes it's not. It's just waxing and waning, like it does. There's this balance that I think between like, supporting people, but not triggering their text, when

Jillian Firenze: 19:28

they talk about my tics and how they're like, oh my god, your tics are so cute when you do this, and then I start ticking. They're like, Yeah, that one. I'm like, well, now you're talking about it. So I'm gonna do it.

Michael Leopold: 19:38

Wait till they start naming your tics that they have your colleagues done that because that's when it that's like next level my parents have How were your parents work with regard to your tics? I mean, so if your brother was diagnosed First, I would assume by that point, they kind of knew what they were getting into. But at the same time, everyone would see us as unique. How would you describe your parents approach to you as when you were die? EDNOS

Jillian Firenze: 20:00

amazing, that's awesome, the most supportive people ever they still are. They were always the first to like, first day school even before to be like at my teachers door to tell them this is my daughter, this is who she is, this is what's going to happen. We use comedy in our household to get through it because if you don't laugh, they're gonna cry. So was made into a joke. Lots of laughing was used. And there's still laughter laughing that has to be used on like dates that are like that tick days. They were and they still are probably my greatest supporter. Talk

Michael Leopold: 20:39

to me about your partner. I guess the big question does, do they have Tourette he does

Jillian Firenze: 20:43

he really 100% He does these little things. And I'm just like, you have Tourette's. He's like a law. I'm not a doctor, I go well, I am diagnosing you because you clearly do. And like even when he's around my siblings, and like all of our tics get amped up. He's like, this is too much for me, this is too much for me, this is overwhelming. And like he starts doing things and he's like, I need to walk away. And I'm just like, there you go. But he's very supportive of me. And he like knows when I'm having like a bad TIG day until ask what you can do to make it better. Talk

Michael Leopold: 21:19

to me about how you first disclosed your TRS to him.

Jillian Firenze: 21:23

I don't know if I did. First,

Michael Leopold: 21:25

I put off the question. If I'm having a good day, and my tics are more mild. It's like when I meet someone new, I can sometimes go a few interactions. If I'm lucky before they see me check. And then I go into my disclosure.

Jillian Firenze: 21:37

I don't think I did. I think he heard it on like, our second or third date. And he's like, what is that? I was just like, oh, yeah, I ever had to tell you. I'm sure it was like, Oh,

Michael Leopold: 21:47

I love when it's just this like, Oh, whatever. Okay, no big deal. Yeah, that's great.

Jillian Firenze: 21:51

He's like, Oh, wait, what is that? And then I had to like, explain. He's like, Oh, how do you do to me? On a coed soccer team? Wow.

Michael Leopold: 22:01

I've always heard that, like sports for adults is a great way to meet people. In the city here in New York. We have like New York City sports. And if I were good at sports, I would do it to make friends and stuff. But I've heard that is that that's the way I'd soccer team Wow, go figure with the CO occurring conditions. How are those in adulthood for you?

Jillian Firenze: 22:21

The depression is the worst anxiety, OCD and then the ADHD, I feel like the ADHD has gotten better. Like, as I've grown up, the anxiety and depression definitely come and go and feel like the depression is like, I don't know if it's just like, mid adulthood is like, weighing on me. I

Michael Leopold: 22:43

could relate. The depression has been an interesting one for me, I had my first bout of it and was diagnosed with depression and eighth grade, and then didn't again have another about until right out of college. I think I was out of my friends circle I didn't, I was getting dinner with the same group of like four guys almost every single night in college before they were my family. We lived together. It was wonderful. And I think between that the extracurriculars I no longer I had such a support system in college. And then I think losing that all of us I didn't really became like a precipitating factor, and went through about a bit after college. And then again, during the pandemic, and quarantine and all of that I never would have expected this when I was 18. And I thought okay, by now I understand how Tourette works. I know my co occurring conditions, ADHD, more or less managed, and then bam, I start getting these depression episodes in early adulthood. I was not. I mean, no one expects that to happen to them. But I wasn't ready for it. I didn't expect it. We don't talk about that enough. That was hard. Yeah. It's like, that's something that has stuck with me. I think the chicks, they are what they are. OCD goes into remission, at least in my case, it sounds like your ADHD got better. But yeah, the depression can, that that can come back. Anything that you found that that's helped you in in living a happy, productive, supportive life.

Jillian Firenze: 24:11

I feel like you have to take it one day at a time. You can like, look too far in advance. You can look in the past and compare your life like how it was in the past, you have to like, look at how today is and what you're doing today and how you're feeling today. Because that's the only thing that matters. And that's how you're gonna get through it.

Michael Leopold: 24:34

What do you tell yourself when you're having a tough day? Are there any mantras that you repeat or words of affirmation or anything that you do when it's a particularly lousy day?

Jillian Firenze: 24:44

Now I gotta get better at just push

Michael Leopold: 24:46

through. I will say the grit and tenacity in our community is like unmatched or like that is something that we learned to deal with ain, to deal with a lot of those challenges. We've had our bad days for sure. When you're speaking to someone with TRS, what kinds of advice do you hear yourself giving the most?

Jillian Firenze: 25:08

to never give up. To never think that you can't do anything just because you have a disability, that tracks doesn't define who you are as a person. And that you define who you are as your own person itself. And never be afraid to ask for help and when you need it. That's hard.

Michael Leopold: 25:31

That last one for me personally. How are you asking for help? I'm so curious as someone that just naturally is such a giving person and such a caring person to your core? Do you find it hard to ask others for help?

Jillian Firenze: 25:44

I am very good at asking my mom for help. But I'm very bad at asking others for help. Yeah, I'm trying to get better at but if I have that one person, I can ask for help, then I'm okay with that.

Michael Leopold: 25:59

No, it takes a certain level of trust and familiarity that comfort with that person saying but before I feel vulnerable enough to ask someone for help, even when they're asking me, How can I support you with your dress? Well, I don't know. Don't laugh at it. Give me some space when I need it. But like really, it's just ignore it. But in my case, I might chicks are more motor. And if you just look away, you probably won't notice it. Asking for help. And being at a point where we can receive help, I think is an important life skill that we we gain that everyone is at the same place when it comes to that being able to ask for help. But that's I can be hard. Well, this has been a lovely conversation with you. Any other thoughts, ideas, comments, you want to make things that you would love for the chess community to hear and know about anything come to mind? No, except to go to the Academy this year? Yes, yes. Everybody go to the Tim Howard Leadership Academy application should be up by the time this episode airs. So please apply. It's a wonderful opportunity. Also, if you are in your 20s you've had what is it I think at least a year or two of college you've been be a coach, and we both been coaches at the academy. That is an incredible experience, you get a ton out of it as well. I feel like all of my episodes are just little like mini commercials for the Academy. But I'm not mad about that. It's worth it. Get involved. There's a lot of great ways to meet people with TRS and build your community build your support, you're not alone in this. All it takes is really getting yourself out there in enough places where you can meet the people that are like you, the people that resonate with you, the people that get you, you know, it takes some guts to put yourself out there and do that that can be scary. But as people who have done that Julian and I can both say the rewards of that are really great and getting to meet others with edit and form lifelong friends. So we're big advocates of that. Thank you for listening to this episode of the podcast and we'll see you next time. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment