With Tourette Syndrome Advocacy being such a huge part of my life, I am constantly trying to find new ways to show people what this disorder really is. It's so important to me that I show it in every aspect and shine a light on it in every way I can. Because of that, I am always looking for new ways to spread awareness and education, which brought me to this photo shoot that I decided to do last summer. I reached out to a local photographer - Sarah Bokone of Boko Photo who I already thought was incredible and had been following on social media for quite some time. I was nervous to explain my idea because you never know what people are going to say or how they are going to react. But, I'm happy to say that she was not only incredibly nice in her response, but seemed just as excited as I was to get started on the project.
I told her that I wanted to have a photoshoot done where it would capture all my tics in action. That it was one of the only other ways that I haven't captured what Tourette Syndrome means for me and I thought that it could have the possibility of being a really powerful piece and hopefully grab people's attention enough to really see what this disorder can be like for a person like me. She was on board immediately and it was as if the stars aligned because she knew exactly how it should be done and exactly what I hoped it would be - Simple and raw, yet very powerful.
We didn't wait long to get the project started. It was her brilliant idea to just have a conversation with me while she took the photos and to record to conversation along the way so that my story or at least parts of it, could be shared with all of the captions. She made me feel as comfortable as I could while getting pictures taken of some of the weirdest things my body does. The nerves for me were there, so my tics were in full force during the shoot, but she acted as if we were just old friends having a conversation, she was fully engaged in my story, and truly wanted to learn more about my disorder and I think that is what allowed me to open up so easily to her. She provided such a warm atmosphere for me to be in, while sharing the most vulnerable sides of my life.
After the photo shoot, I thanked her for not only jumping on board for the project, but making it so easy for me to show this part of me while she captured it on film. She did a phenomenal job and the pictures along with the captions are shared below. She made me feel beautiful, in one of my most vulnerable and embarrassing states. I never felt beautiful while ticcing before this photo shoot happened, and I'll always be thankful to her for that. Check out the pictures below and even more so, check out all of her other amazing work too, you won't be disappointed!
"There are basically different levels of TouretteSyndrome. I have a mild case but it can umm…it can get…pretty bad sometimes. There are some days when I can’t stop crying and I can’t stop moving. It can start from the minute I open my eyes in the morning until the minute I fall asleep at night. There are also different things people do. With my tics, I could tic this way today and never do it again or I could wake up tomorrow and have a whole new set of tics.
When I was a child, I used to flip my hair upside down and then back up. That one was painful. I’m always hurting my neck, like on the way here I pulled a muscle in my neck from ticcing in the car. Sometimes my stomach tics and people don’t always believe me but you can’t always see it. My muscles will contract and I’ll hold my breath. Sometimes I tilt my neck back so it can also look like I’m stretching and I have to do it until it feels right. It’s hard to explain, I just have to do it until it feels complete and if it doesn’t, then I repeat it over and over very quickly."
"Most people only know about the swearing part of this disorder, but I don’t have that kind. Really only 10% of people with Tourette Syndrome actually do that and they don't just swear either. They can be triggered by anything they see. Cat! Or camera! I can be triggered by someones facial expressions, like if you move your eyebrows up and down a lot. It almost appears as if I’m mocking someone, but I’m not, it’s just a trigger. There is a comedian, Chris D’Elia, who’s funny but I can’t watch him because he moves his eyebrows too much and it triggers me. If I do watch him, sometimes I have to look away." disorder, but I don’t have that kind. Really only 10% of people with Tourette Syndrome actually do that and they don't just swear either. They can be triggered by anything they see. Cat! Or camera! I can be triggered by someones facial expressions, like if you move your eyebrows up and down a lot. It almost appears as if I’m mocking someone, but I’m not, it’s just a trigger. There is a comedian, Chris D’Elia, who’s funny but I can’t watch him because he moves his eyebrows too much and it triggers me. If I do watch him, sometimes I have to look away."
"I’ve always been really open about my Tourette Syndrome and I have a YouTube Channel. I try to tell people more and more about it because I want them to have a better understanding. I also want people who have it to know that they can be okay with it. There are some people who aren’t comfortable with their disorder and they will try and try to hold in their tics but you can only hold it in for so long. Whenever I held it in, I’d go home and I’d be a disaster.
I did my first awareness walk last year at the Scrappers stadium and raised $5,000. I just want to bring awareness to the area and it gave me a chance to be around people like me. People would thank me because there was nothing like that around here and it made me feel good. I just want people to know that there is someone out there fighting and that we are not just a punchline. We are not just a joke, which is how you always see it portrayed on TV."
"I do a lot of things in pairs of two. For example, I flick my hands a lot but I always have to do it twice and then I have to do it on the other side. It’s kind of OCD as well. A lot of people with Tourette Syndrome have OCD or ADHD. That’s another thing that people don’t understand about OCD. It doesn’t mean that people just like stuff clean, but it’s compulsions."
"Emotions trigger my tics. I’m a very excitable person…which is good and bad. I have a temper I’m not exactly proud of but I also get very excited about things. Growing up, I danced. I danced for 20 years and it was my escape from Tourette Syndrome. It was the only time where I could move my body how I wanted to. I loved dancing on stage; I could express myself and it was my free space. But before dance recitals I had to start staying home the day before because it got so bad that my mom had to come pick me up.
I’m also kind of afraid of thunderstorms. It’s gotten a little bit better but if there is a tornado warning, I start ticcing really bad and I have to really concentrate on my breathing. My husband will sit next to me and rub my back and try to calm me down. I don’t take medication for it because I don’t want to. I don’t always feel like I have a need for it. I did take medication my senior year of high school because it was an exciting year and a lot of things were going on. I also took it all throughout college. I worked while in school which caused me to get really stressed out and it would trigger me."
"I do a lot of the adult coloring books to calm myself down. Sometimes I take lavender baths but not too often because I feel like they’re a lot of work to just sit there and get bored. Once I’m in there, it's like I have to force myself to stay there. I also exercise a lot and I’m a personal trainer on the side. Exercise took place of dance and I really like lifting weights because it makes me feel like I have control again. But…I’ll never not tic again. I wouldn’t mind never having a tic again, but I also wouldn’t want to have never done it. It’s just me, it’s always been a part of me."
"Sometimes you can have a “tic attack” where it gets really bad out of nowhere. It really bothers me when it happens in a store. That’s probably the place that gets me the most because I’m afraid someone will say something."
"People aren’t always rude to me, but it does happen sometimes. This one time I had someone comment on my YouTube video that I would be more interesting if I swore. It was the most ridiculous thing. I’ve also had a woman tell me that Tourette Syndrome didn’t deserve as much attention because there are other things out there that are much worse. I’ve never bit my tongue so hard...It bothered me all weekend long. That was probably one of the most ignorant things anyones ever said to me. Sometimes people are like, “Well you look fine”…but what am I supposed to look like? You know?"
"I always worried that I would never be able to find someone that would be able to handle my tics. But my husband is a very laid back person, he’s amazing, and I’m a very, very lucky person to have him. But I still get worried sometimes, like what if down the road he decides he can’t take it anymore, you know? I don't worry too much about it, but it's still a thought in the back of my mind.
I met my husband when I was 19 and we’ve been together for 10 years this coming September. I told him about my Tourette’s the very first day. For me, it’s not worth falling for someone if they can’t handle my tics. This is such a big part of my life and I’m so open about it and proud of it. I’m proud of who I am. My husband says he loves me more because of it. He said it’s made me who I am and that his feelings for me could never change.
My husband is my best friend. I love him so much. SO much.
...We’re really mushy."
Find more of her amazing work at http://bokophoto.com/?fbclid=IwAR0YXgeTmPBSTjvUhANuZixOX7JyR7iDJzdKVhKsi8v2gT3d8ODbe1VUB1E