March 25 is Cerebral Palsy Awareness Day: An Education


My son started kindergarten this past fall, and it has been an education. From love letters to girls, to bullies, to hot-versus-cold lunch, every day is a new and exciting adventure. Then there is the fact that I am exposed to a whole new range of five-year-olds and parents, outside the realms of my own offspring. One of his classmates has Cerebral Palsy, and as today is Cerebral Palsy Awareness Day, it seemed about time to share my education.

So what is Cerebral Palsy? If you had asked me pre-kindergarten, I would have mumbled something about a wheelchair, maybe about limited movement. For a condition that affects 17 million people worldwide, I knew remarkably little. Yet still, my description would have been in the ballpark, if not hitting a home run. Cerebral Palsy is a physical disability that affects movement and posture. In fact, it is the most common physical disability in childhood. This information sheet from Ideas for Change has been key in informing me about this disability.

Infographic courtesy of Ideas for Change.

I have to pause every time I look over those associated impairments. One in three is unable to walk, I see that. One in 10 has a severe vision impairment, okay, understandable. Three in four experience pain? How is it possible that the scientific understanding of Cerebral Palsy, its prevention and causation, remains much the same as it did 50 years ago, when 1 in 303 children in America are affected, and of those children, three in four experience pain. I know more about which kinds of lunchmeat and shellfish to eat on my third pregnancy than I did on my first, but we haven’t made any breakthroughs in Cerebral Palsy in 50 years. I’ll say it again, three in four experience pain. This blows my mind.

But beyond these statistics and black-and-white images of what it can look like, there is the human aspect. To my son, his classmate is just one of the girls. To be honest, he’s a little envious of the wheelchair. I don’t worry about how he interacts. Adults, on the other hand, may need a few tips.

Infographic courtesy of Ross Feller Casey, LLP.

So what can you do today? Find a local need and support it, write to the NIH and CDC to request that they add line-item funding for research (there currently is none specified), and share these infographics. But more than that, speak directly, speak normally, and relax.

Body Image and the Geek

Me around 1990. Who knew this cute kid would later have severe body image issues? \ Image: Dakster Sullivan
Me around 1990. Who knew this cute kid would later have severe body image issues? \ Image: Dakster Sullivan

Body image is something that is very hard for me. I can actually remember the first time I withheld myself from eating a snack because I was afraid I would get fat. It was a honey graham cracker cereal bar. I also remember the gratification that came with taking control and not eating it despite my hunger. You’d think this would have started when I was 14 or 15 and seduced by the magazine covers. Well, you’d be wrong. I was around 10-years old when I started to watch my food which would later grow into unhealthy habits that no one, but myself, could stop me from continuing.

Looking at me here, would you have guessed I had body issues? \ Image: Dakster Sullivan
Looking at me here, would you have guessed I had body image issues? \ Image: Dakster Sullivan

When you’re a kid, you have very little control over what you can and can’t do. You’re told when to go to bed. How to dress for school. Where to go to school. What classes you are going to take. And depending on your parents, sometimes your after school activities are chosen for you.

The only thing no parent or adult can control is how much you put in your body.

They can tell you what to put in it, but they can’t force you to eat it. They can threaten you and punish you if you don’t eat, but they can’t physically put the food in your mouth and force you to swallow.

The struggle I just mentioned is what I battled with my parents for years. I was underweight and even though I didn’t see myself as fat, I wanted some control over my life, so I looked to food as the answer.

At first I didn’t starve myself to avoid getting fat. I would starve myself just so I could have the satisfaction of knowing I was in control of my body and it was not controlling me.

Eventually, it would turn into an effort to not gain weight. When I was growing up, I was surrounded by people who would remind me that “One day you’ll blow up like a balloon just like me” or “your metabolism will kick in and you’ll start gaining weight” or they would tell me stories about the freshman 10 when you gain 10 pounds the first year of college. All of this negativity about weight, and how I would look later in life, would not only set me on the road to anorexia, but also depression.

The lack of control I felt in my life, coupled with not wanting to inflate like Shamu, would eventually lead to unhealthy eating habits that have followed me into adulthood.

My homecoming picture from 2002. \ Image: Dakster Sullivan
My homecoming picture from 2002. \ Image: Dakster Sullivan

At my middle school and high school, food choices were varied and included vending machines of sugary drinks and junk food. I used these to keep me from getting hungry and allowed myself one honey bun and a fruit drink at lunch. This would fill me up enough to get through the day and when I got home I would dance in my room until called for dinner, where again, I would eat as little as I could.

Before my parents became aware of my problem, I would push food around my plate to make it look like I ate more than I really had. At times, I would say I’m just not that hungry or that I wasn’t feeling well. Those tricks worked pretty well, until someone told them what I was really up to.

Once my parents learned about my tricks, it was nothing but downhill from there. They were told I was trying to control them, which was not only inaccurate but got me in trouble at home. It wasn’t until I reached my final years of high school they learned the truth: that it was myself I was trying to control.

As an adult, I’ve been pretty content with my body. That is, until I started getting into cosplay and realized I didn’t want to be the slave Leia the guys talked bad about behind their back because my stomach isn’t flat enough or my butt not round enough.

A danger of cosplaying as Aayla is how much you are judged on your figure more than your costume. \ Photography by JonathanSidwell Valgardr Gunnarsson
(2014) A danger of cosplaying as Aayla Secura is how much you are judged on your figure more than your costume build. \ Photography by JonathanSidwell Valgardr Gunnarsson

My husband thinks it’s because I read a lot of comic books with unrealistic bodies. That could be true.

When I look in the mirror I see someone who needs to head to the gym and lose about 10 pounds. What others see, I’ve been told, is a bit different. They see someone who is young and beautiful and needs to eat a few donuts.

I’m only a month-and-a-half away from hitting 30 years old. The infamous 3-0 is when I’m supposed to blow up like a balloon. The problem is, in my eyes, I already have thanks to my anti-depressants. This has caused old habits to try and resurface and new tricks to be formed. I even joined Weight Watchers to try and get back to my unhealthy underweight status.

Why am I telling you all this? To get it out in the open that I still struggle. It’s not easy to bounce back from an eating disorder to see yourself gaining the weight you spent your younger years trying to avoid. I can’t say I’m back to my old habits, but I don’t see my body the way others see it. I’ve been complimented by celebrities and some pretty amazing people about my looks and how I look in my female character costumes. It makes no sense to anyone, but for me, I see weight to lose and not weight to gain.

Meeting My Childhood Teenage Mutant Ninja Turtles

(Right to left) Barry Gordon, Cam Clarke, Dakster Sullivan, Townsend Coleman, and Rob Paulsen \ Image: Dakster Sullivan
(Right to left) Barry Gordon, Cam Clarke, Dakster Sullivan, Townsend Coleman, and Rob Paulsen. Image: Dakster Sullivan.

Meeting the original cast of the 1980s Teenage Mutant Ninja Turtles during Nickelodeon Resort’s “TMNT Retro Weekend” was more fun than I could have imagined. It brought back so many old memories and at the same time, I was creating new ones.

I had the opportunity to tell the cast my own TMNT story: how when things get rough with my anxiety, as an adult, I turn to the Turtles to take my mind off of it. I guess you could say that the Turtles give me an escape from anxiety and depression.

As a child, I looked up to the Turtles and pretended they were my brothers, always there to protect me. When things got rough, I would go to my room and escape into that world where they were there to comfort me and take my mind off of whatever was bothering me.

Many of us have similar stories about our favorite fictional characters, who can be so key in helping us deal with so many aspects of growing up. I never expected to have a chance to tell them in person how much they’ve helped me. A press junket for the Nickelodeon Resort afforded me the opportunity, but it also created anxiety: how do you meet those who helped your childhood self so much without going too fangirl? And there was the added question of whether my still-present anxiety would overwhelm me, even on this happy occassion.

The day of meeting the cast started calmly. After a fun-filled breakfast down in Bikini Bottom with SpongeBob and friends, we headed into Studio Nick for a special TMNT meet and greet.

But when the time came to actually walk into the meet-and-greet area, my heart started racing. Soon, my family and I were face-to-face with none other than the Teenage Mutant Ninja Turtles and April. Happily, they were a pretty lively bunch and struck a ninja pose with us for a picture and all went well.

These weren’t the only Turtles I met. On stage was the original voice cast of the ’80s cartoon series, Teenage Mutant Ninja Turtles. And this is where my anxiety kicked into high gear. I couldn’t help it. I literally jumped up and down when it was my turn to say “hi” and get my picture taken.

However, they were the nicest guys I’ve ever had the pleasure to meet. My heart almost jumped out of my chest when Rob Paulsen recognized my name and said we were friends on Twitter. Before my time was up, I had a moment to tell them the origin of my nickname, Dakster. It’s a mix between my initials (D.A.K.) and Baxter Stockman, an evil scientist from the TMNT universe.

Booyakasha! TMNT!! \ Image:  Dakster Sullivan
Booyakasha! TMNT!! Image: Dakster Sullivan.

After my geekgasm, my husband and I walked out of the room so I could catch my breath. Even as I’m writing this, I can remember the anxiety I felt being up on the stage with the cast. It was a powerful experience meeting the guys who played characters that were such an important part of my childhood. I only wish everyone could meet their own childhood heroes.

Once everyone had their pictures taken, the floor was open for a Q&A with the cast.

The original cast was as much fun to listen to as their cartoon counterparts. One thing I was surprised to hear was how they didn’t expect TMNT to take off as much as it did.

Barry Gordon (voice of Donatello) remembered his reaction when his agent called about the audition:

“Is that all you have to do with your day is call me and make jokes? So, he said no, really it’s TMNT and I said okay. I went down there thinking that this is the most insane audition I’ve been on. I read a few pages of it and loved it. Just loved it. It was just funny from the very beginning.”

You could say I was jumping with excitement to meet the voice cast of TMNT. \ Image: Dakster Sullivan
You could say I was fangirling with excitement to meet the voice cast of TMNT. Image: Dakster Sullivan.

Rob Paulsen (Raphael) reflected on what Barry said:

“Townsend (voice of Michelangelo) and I were actually working on an animated version of Fraggle Rock on NBC. [cheers from the audience] Thank you. Where the heck were you when it was being cast? [laughter] And I’m not a big comic book fan, but I was familiar with the comic book a little bit and one thing led to another and like Barry said, we audition for stuff all the time. It’s crazy how you audition for something and if you’re lucky, you get to make a living, but something this iconic to the extent that you get to come back 25 years and get to meet all of you guys, it’s an amazing experience.”

Townsend Coleman continued on that thought:

“Like Rob said, we were working on Fraggle Rock for NBC and the voice director came into the session and pulls a script out of his briefcase and says, ‘You guys are not going to believe what I’ll be directing and casting next,’ and he pulls out a comic book of Teenage Mutant Ninja Turtles and shows us. I remember us looking at it going ‘What?? Good luck with that one,’ and he brought us in to audition and we all read for all the parts. Who knows how we ended up with our parts. They knew that Rob was going to be Raphael and Barry was going to be Donatello, but they didn’t know if Cam was going to Michelangelo or Leonardo and same for me until we got into that first session.”

When Cam Clarke had his chance to speak, he was nothing like his cartoon counterpart, with jokes left and right:

“I will tell you that when the show started, these wacky coconuts got all the funny lines and as the leader, I was the straight man of the group and was like ‘I can say something funny,’ and they said no, you say, ‘We’ve got to think of something fast.’ “

TMNT Awesome! Me and my Turtles \ Image: Dakster Sullivan
TMNT awesome! Me and my Turtles. Image: Dakster Sullivan.

After a brief break, a select few in the audience were allowed to break into a one-on-one meeting with the cast and ask them any questions we had. I was able to have a brief meeting with them on stage to get a poster autographed and show them the Teenage Mutant Ninja Turtles: The Ultimate Visual Guide (Insight Editions). I couldn’t believe how excited they were to look over the book and when I showed them a cast photo of them 25 years ago, they went nuts.

Being on stage with them for those few minutes really kicked my anxiety in and it showed. While Barry and Townsend were signing my poster, Townsend noticed my hands shaking and I told him about my anxiety. He took my hands and told me everything was okay in a very comforting way. I can’t tell you how much that helped me at that moment. It’s wonderful when role models live up to the job.

After everyone signed my poster and looked over the book, I told them my personal TMNT story and they seemed touched. They gave me comforting hugs all around. As I’m writing this, I realize how ironic it is that 25 years later, they comforted me again, but this time in person when I was on the border of having a panic attack.

After we took a couple more pictures, it was time to say goodbye. As cool as it was to meet them, I felt like I was saying goodbye to my childhood friends. I know it’s not goodbye forever though, because all I have to do is turn on the TV and I’ll see them again. And looking back, our meeting will be yet another happy moment that helps me with the anxiety.