Narcolepsy Network's Annual Conference

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This past weekend was the Narcolepsy Network's 27th Annual Patient Conference, which I had the pleasure of attending! Conveniently (for me), located in Cleveland, OH on the campus of the Cleveland Clinic, the conference's theme this year was "Banding Together Over Narcolepsy", noting the city's fame as the birthplace of rock 'n roll.

These conferences are a great way for people with narcolepsy to meet others just like them from all over the country (and even internationally from Canada and Australia this year!) and support each other. I had a fantastic time this year; same as last year, just a different city!

The speaker I was most excited to hear was the amazing Dr. Emmanuel Mignot himself; the Parisian director of the Stanford Center for Narcolepsy who is internationally recognized as having discovered the cause of narcolepsy. Just as exciting was getting to see my role model, REM Runner Julie Flygare, again after an entire year! (By the way, be sure to check out Julie's amazing essay "Sleep's Choice", recently published in SleepMatters: A Publication of the National Sleep Foundation).

Lucas and Ethan

I was so glad to see all my "sleepy" friends doing well and having improved in many ways since I last saw them. Bailey from Texas has found ways to drastically minimize her horrible cataplexy and has even gotten her driver's license--much better compared to a year ago when she thought she'd never be able to drive. Cejae was the most popular attraction of the conference, with her new masseuse certification and massage chair on hand to provide some professional relaxation instead of just "homework practice" as we called her massages a year ago. I met plenty of new friends as well. There was Ethan, a junior in high school who had us laughing the whole time; Raenah and Autumn, step-sisters who were there to either learn more for herself (Raenah, the narcoleptic one) or to gain a better understanding of what her sister has to go through every day (Autumn, the non-narcoleptic one); Lucas, the soccer champ from Australia who came a long way with his family for the conference; and so many more it would take me forever to list them all!

My Public Awareness Award :)

I was so honored to be given an award from the Narcolepsy Network Board as well! The annual Public Awareness Award has been given to some great narcolepsy advocates in the past, such as advocacy devotee Julie Flygare and professional golfer Nicole Jeray. This year the award was given to three people; narcoleptic couple Katy Scruton & Robby Roden and myself, for our roles on MTV's True Life: I Have Narcolepsy. Unfortunately Katy and Robby were unable to attend the conference, so I had to make a short thirty-second impromptu "few words" by myself... To call that the most nervous moment of my life would be an understatement!

As a final note, I'd like to give a shout-out to Cassie from Oklahoma :) Her father, Larry, sent me an e-mail to tell me that he liked my blog (I have fans, like actual fans?! This e-mail totally made my day!) and told me a little about Cassie. Being a freshman in high school is hard enough, and adding narcolepsy into the equation doesn't make it any easier. Keep on smiling, Cassie, and good luck with volleyball!

I suck at volleyball now thanks to my cataplexy making my arms go weak when I try to hit the ball, but I still play with friends and make an absolute FOOL of myself! :D

63 Sisters, 2 Truths, & 1 Lie

Getting pumped for Homecoming!

 Joining a sorority was a big move for me. Being around 50-60 girls I am already beginning to think of as my family, creates strong bonds and makes for a lot of fun time spent together. For Alpha Gamma Delta (the Gams), this typically includes a lot of obnoxious unnecessary laughter and jokes. For a cataplectic, this typically includes body paralysis, usually partial but sometimes the whole big deal.

I knew I'd soon have to tell my new sisters about me; they need to know if they're going to be a part of my life through college and the rest of my future. But I hadn't quite thought of how to bring the subject up and explain to everyone at once. My Resident Assistants hadn't even been told yet, whoops... I was going to put the thought away for later when my sisters suggested as we were getting to know each other after Bid Day, that we play Two Truths and a Lie.

My grandparents' Haunted House in Mansfield, Ohio.

When my turn was up I was fully prepared. My three statements were:

1) I love raccoons.
2) My family owns and runs a haunted house.
3) I have my own show on MTV.

Of course everyone thought I lying about the last one, but I shook my head and laughed a bit, telling them how much I hate and am terrified of raccoons. Before I could even begin to explain the MTV deal, a few girls made the connection. They asked me if I slept on TV, between a few "oh-my-gods" and "no ways". And I then got to explain to nearly all of my curious new sisters at once, what narcolepsy and cataplexy are and what to do if I had an attack.

It was the easiest, painless way I've ever had to tell somebody about my narcaplexy and I'm so glad they were understanding. I really do have the best sisters a girl could ever ask for!

Narcaplexy 101: Dating in College

I've had quite the crazy first week here at college! One week of Band Camp, one week of actual classes, and the three-day weekend that Labor Day bestows upon us. In that time, I've done so much and made so many friends that it's hard to believe! My new college life is everything I'd ever hoped it to be.

While I HAVEN'T been running around off-campus housing getting ridiculously wasted from cheap alcohol and making a fool of myself like so many movies portray the average college experience to be, I HAVE made a ton of friends, been a part of some late night homework parties in the lounge, completely destroyed any resemblance of a normal healthy eating schedule that I might've had, and met a really great guy who lives in my building and definitely likes me back :)

If you know anything about the high school I went to, you'll know what I mean when I say that being in a class of 700+ freshmen is a big adjustment. My graduating class from high school? Four (4) students, including me. The campus I live on now is home to 4,000 other people my age and a bit older. You can imagine how surreal it is to me, to be able to walk to a class four blocks away from my room and not see a single familiar face. I kind of like it, really. And of course, there are lot more guys at college than there were at my high school. Guys that I live in the same building with and see every day. Any girl in this position would be excited, but a girl who graduated with only two other boys? It's more at a little-kid-in-a-candy-store level of excitement ;)

Remember that guy I wrote about in my last post? The nice guy I met in the laundry room of my building and ran into at a Weekend of Welcome dance later that night? Well right now he's eating pizza and watching Sherlock Holmes with me; our own Labor Day celebration since 2/3 of the campus has gone home until Monday.

I've spent the past week fretting about telling him about me, about my Narcaplexy and all the potentially embarrassing bits that comes with my lifetime diagnosis. How would he react to hearing that I have a constant struggle with staying awake? And what about the fact of collapsing when I experience "strong emotions"? I love laughing, any guy I'm with had to be able to make me laugh or it's just not complete for me. If we decide to make this into a relationship, thus spending a lot more time and experiences together than friends, will he be okay with having to be the one to help me when my body thinks I'm starting a dream and I collapse to the floor? Flirting alone presents a problem for me. Teasing, laughing, meeting the people in his life... The inevitable minor fighting or jealousy? Getting involved with someone creates a lot of subconscious emotions that we don't deal with everyday, and some I've probably never experienced in my life.

As an average hormonal 18-year-old girl, my muscles betray me when I so much as walk by a cute guy, let alone smiling and talking to one. What will happen with a guy that has feelings for me, feelings I return? This is all new to me; so many questions, so many answers I'll have to discover my own.

Back to my week of fretting: I was so worried of scaring him off, having him think I was a freak and deciding that the likely normal bubbly brunette he'd been dancing with the other night would be a safer bet. My friends told me not to worry, if he was as cool as I made him out to be he'd be totally accepting of me, sleep disorder and all. Just approach the subject naturally and don't make a big deal out of it. Okay, so now I had to make it as casual as a conversation about the weather or he might realize I was making a big deal of it and worry... no pressure? And all this while I had to act normal around his friends who also had no idea or they might all think I was a slurring clumsy drunk and they'd ALL avoid me. While living on a campus with 4,000 strange faces, usually coming home at night almost too tired to handle the hike upstairs to the 3rd floor. No problem, right? :S

Well I finally told him. One morning, when he came upstairs to hang out with me. I was online trying to see when True Life: I Have Narcolepsy would be on next, thinking that would be a great conversation starter. "Hey look, that's me! Yeah, the one that just fell on her face in dance class..." No such luck, so when he asked what I was up to I flat out told him what I was looking for. This began the next 10-15 minute conversation of explaining everything, and finally telling him what I'd been so scared about. He assured me not to worry, he's not so that easy to get rid of... As if I had ANY intention to! ;)

And he's sure proved to be great about it. Keeping my naps in mind and reminding me to sleep when I start to slur but have no desire to pass out for 30 minutes, watching out for my clumsiness, being cautious when he makes me laugh and stopping when I tell him to so I can regain composure. He even reminded me to take my medicine one morning when he'd noticed I hadn't! The best was when he made a disappointed comment to my roommate, Beckah, about not being able to start a tickle war with me. I laughed and promised him if he was good then I'd explain the rules of tickle wars with a cataplectic--he cheered right up!

Things truly couldn't have gone any smoother with him. I'm so glad that he's accepting and protective and mindful of my daytime sleep schedule and my limitations from cataplexy. I really feel like the luckiest girl in the world right now :)

Narcaplexy Milestones: My Bowling Revenge

If you've watched True Life:I Have Narcolepsy then you've seen my experience the last time I went to Nortel Lanes which was a year ago, almost to the day. That was when my narcaplexy was at its worst, before I began taking medication and my other treatments to maintain the shred of normalcy I hoped was left in my life. I spent practically the entire time there either slumped in a chair or sitting on the floor clinging to the ball return, and MTV only showed you about 1% of the entire experience.

Well last Saturday, I went back to that bowling alley for the first time since then, with a different group of friends that make me laugh even more. My best friend Samantha who I haven't seen since Thanksgiving drove up from Georgia to visit her family and friends here in Monroe. I was severely in need of some quality fun and I got a huge dose of it, and can proudly say that I *mostly* managed to fight cataplexy, beat gravity, and avoid the ground!

So she picked me up Saturday for some mall, Chick-fil-a, Paranormal Activity 3, and cosmic bowling with our friends. I love when Sam visits, mostly because our friends are insanely funny. Like literally and completely crazy, so much so that even Sam ends up doubled over on the ground from laughing, and she's definitely not narcaplexic. As soon as I walked out of my house I felt that tight-throat weak-knee feeling hit me and I knew I'd have a long night ahead of me with trying to keep my muscle control in check.

Bowling was great and I was so proud of myself for actually managing to bowl for myself almost the entire time. Here those who have seen my True Life episode might remember my friend Kyle offering to bowl for me, because I couldn't move off the floor. I even sat on the barstools without worrying about falling off! Of course I'm not very good at bowling anymore; either from the cataplexy or the brain damage from my car accidedent, my arm muscles can get weak and randomly drop down limply, especially on my right side and I'm right-handed.

After about two hours we were done and I was grinning ear-to-ear with pride: I had conquered the bowling alley and gotten my revenge!

At least until one of the guys with us who I don't see too often, Scottie, started telling me jokes as I was climbing into the back of the car. One right after another, continuing even as I was leaning on the car and repeating "STOP" in between laughs, until I fell down onto the wet cement. It was all right though; Sam was behind me and caught me so I went down a bit more gracefully and didn't hurt myself, and he apologized and tried to help me up though I wouldn't let him. Plus, it was funny to hear her yell at him a bit once we were all safely in the car :) All in all, a really great night that was made perfect by re-found strength.

And since it was in the parking lot, I can basically say that I won, right? Yeah, I think I'll stick with that!

Watch It Online Now!

Woohoo! I finally got to watch True Life: I Have Narcolepsy! I think MTV did a great job of putting it all together; thanks guys! So check it out below and let me know YOUR thoughts on it.

Get More: True Life, Full Episodes

True Life Airing Again on Saturday!

FINALLY! True Life: I Have Narcolepsy (co-starring me :D) will air on MTV again this Saturday November 5th at 3pm! Set your DVRs everyone! :)

I, ONCE AGAIN, will be unable to see it--I work from 3-10pm on Saturday! Maybe I'm not meant to see myself on television... :(

*subject to change, knowing MTV*

Meeting "The Other Julie"

As I mentioned before, the conference in Las Vegas was full of Narcoleptics young and old, each with their own story to share. One woman who really struck me as a truly amazing person was Julie Flygare, a woman with Narcaplexy who has devoted her life to being an advocate for this disorder. She ran the Boston Marathon for the group Wake Up Narcolepsy in April 2010 which raised money for Narcolepsy research, worked with Harvard Medical School to create an informative Narcolepsy video to be shown to all of its students, and has a blog where she keeps her fans updated on her daily trials being an advocate for Narcolepsy and her work on her memoir.

I attended two of Julie's sessions at the conference; one about blogging and the other about advocacy. It was almost like hearing a motivational speaker, I imagine. She was so inspirational and made me want to tell go tell every person in the casino about Narcaplexy (now THAT would give Narcaplexy a weird reputation!). I still can't believe that I spoke with her, and then she asked to take a picture with me for her blog! That was a pretty great moment for me :)

And then to make things even crazier, my True Life episode, True Life: I Have Narcolepsy, aired on the 18th! They changed it on me at the last minute so I haven't even seen it yet :( I was flying home from Las Vegas when it premiered. So if you didn't get the memo and missed it, be sure to watch out for reruns or when it gets posted on MTV's website.

Filming, Day 1

After I found out Friday night that True Life was definitely going to happen, everything else came fast like a whirlwind. Saturday night my family and I met with the producer, Brandon, and got to know basically what was going to happen. I had a few cataplexy attacks but more interestingly, got to hear about what he knew about narcolepsy and the other people he'd filmed for the show. Sunday he came over to my house and filmed a bit of us talking about my illness and doing a craft thing for school.

So today was my first day of filming for MTV's True Life. I was excited as was everyone else at my school. Brandon showed up despite the horrid weather we were slammed with the night before and everything was set... until my principal called it off. Yes, apparently a few parents were very outspoken about MTV filming at the school and some of the Board of Trustees were throwing a fit. Despite his and mine extreme pleading efforts, it was a definite no. This happened over the course of all day so the filming he DID get with my 10+ attacks is useless.

That's all I'm going to say about filming. But I did have a funny off-camera spill this morning. I was in the school lobby talking to Brandon and Bailey (my brother) when they made me laugh and I tumbled forward and then onto my back with my head bouncing on the hard floor a bit. I was fine, but the visiting family wasn't. All they saw was a 'passed out' appearing unconscious teen and a bunch of adults standing around laughing. It's good to know I can still scare people!

Making Me Laugh

Ahh! I forgot to tell you the funniest part about my night! It's making my speech slur just to think about it.

Of course I had to make the announcement to my friends mid-dance that we'd gotten approval for the MTV thing. So I had a bunch of alumni students or just other kids I don't really talk to wondering why I was going to be on True Life. I had to explain my 'illness' which they actually found amusing (surprise, surprise). This resulted in everyone trying to make me laugh for the rest of the night, wanting to see me fall for some reason. I guess it's hard for those who haven't seen it to understand.

After the dance I was leaving along with the chaperones and couple kids that had yet to leave. As soon as we got outside they began to goof around and tell horribly lame jokes for my sake, and just to be safe I decided to stand in the grass instead of the concrete, and they followed. As soon as my feet hit the grass, something about the absurdity of the situation made me crack up and I fell straight down to the muddy ground. I landed on my back, unable to move, a smile frozen on my face, and the horrid urge to cover my face from them as they crowded around me, calling out that I'd faked it.

Soon I was able to move and they helped me stand up and brush off, asking over and over if I was okay. So amazingly I felt okay. The only part that embarrassed me was the no-doubtedly creepy frozen smile on my face while I was down. I think it was that these kids were so understanding and eager to understand further. Plus, they were all younger than me--my brother's age--and as long as I can remember had looked up to me, so I knew nothing that I did would make them think I was a freak.

You have to admit it, even I have, that this was pretty darn hilarious and overall an end to a pretty great night :)

True Life: Narcolepsy and Cataplexy Part II

Good news: I am definitely going to be camera stalked for a week for the True Life show! I just got the call tonight that everything is all set and the producer, Brandon, will be here by tomorrow. I can't believe this actually worked out. If someone would've told me when I first saw that ad that I'd appear on any MTV episode even if just for a few minutes, I would've laughed. Mostly I'm glad that I'm helping to get the word out. I mean, that's why I want to do this at all. The more people know, the better for me and every other person out there suffering from narcolepsy and cataplexy.

So filming begins Sunday and will follow me through school next week. Let's hope for lots of laughter and awkward situations for them to film, haha :)

Tonight resulted in some killer cataplexy. I had to play my flute at a funeral memorial service for my principal's dad after school, so I was dress in a nice black skirt and top. Afterwards was a dance for the 7th through 12th graders (pre-planned before his death, let me add!) and I just decided to wear the same clothes.

I should've known that was a bad decision. My cataplexy ended up being bad that night and in the very beginning someone was cracking jokes. I quickly decided to leave the room and regain my cool but on my way out, felt my muscles go stiff and BAM, I hit the floor. Let's just say that falling flat and then having momentary muscle paralysis is NEVER good in a short skirt, so I decided once I was able to move and get up that I'd switch back to my jeans. Much safer!

Dancing turned out being hard for me. I felt like my limbs were made of jell-o as I attempted to dance with my friends, and I nearly gave up it was so hard. Good thing I didn't, because soon the weird feeling passed and I was able to hold on my own and have fun like I used to. Well, almost like I used to. I stuck close to the wall, just in case.

But there's my night! I had fun, it was definitely worth it :)

True Life: Narcolepsy and Cataplexy

Oh boy, have I got some news for you! I just got home from my sleep study and I got a call from the producer of the MTV show True Life, saying he’d received the e-mail I’d sent him earlier that morning between my naps and was interested in using me for the show! Now I’ve never even seen the show (we don’t have cable at my house, therefore no MTV at all) but I’ve heard about it and I know I have friends who watch it. Not too much word on what’s for sure happening now, but it may happen as soon as next week! I’ll keep you updated.