So now I'm gong to bike across the country to raise money and awareness for Narcolepsy.
Narcolepsy is a sleep disorder in which suffers experience excessive daytime sleepiness. These periods of extreme sleepiness are also known as sleep attacks. Sleep attacks occur suddenly often causing people to fall asleep at inappropriate times...like at work, in class, driving, with friends. Besides the excessive sleepiness symptoms of narcolepsy are cataplexy, sleep paralysis, and hypnagogic hallucinations. Of the three cataplexy can be dangerous for some depending on the severity. Cataplexy is the loss of muscle control. Most episodes are brought on when an extreme emotion is experienced.....emotions such as anger, laughter, surprise. People don't understand what narcolepsy is, how severe it can be, or how hard it is to live with.
Its thought that most narcoleptics go years before being diagnosed. I can tell you as someone living with narcolepsy that dealing with it while being on medication is difficult. I can also tell you as someone who learned the hard way that they were narcoleptic living with it untreated is unbelievably difficult.
In December of 2007 I was driving home from a school orientation. Getting ready to start college, being 18 years old, and having just gotten a new car....or well knew to me it was acutally a used explorer, I was excited and ready to begin my life! That night coming home I started to feel sleepy. I figured I'd be okay I mean it happens all the time and I'm always able to make it home. I didn't have that much further to go so I decided to just keep going. That night I fell asleep behind the wheel and totaled my car, got 2 tickets that ended up costing me like $500, I lost my license...which they still haven't given back, they made me go to driving school....yes thats right driving school after having taken my license away! I lost my freedom that night! I also smashed some poor guys car and he hit the guy in front of him who went on to hit the guy in front of him. I caused a really bad accident. I'm so thankful that nobody was hurt but they could have been....and because why? Because I was driving thinking it would be okay. Not knowing that I suffered from a disorder that made it impossible for me to control these sleep attacks on my own.
Narcolepsy is serious and it makes it so much harder to live with when people around you think its a big joke. People are mean and rude when I fall asleep when I'm with them. They say stuff that makes me feel bad because its something I can't control. They don't seem to understand that I CAN NOT CONTROL IT! If I could I wouldn't waste away my days sleeping. People don't like to go out and do things with me because chances are I'm going to fall asleep. Living with narcolepsy takes a pretty heft toll on your life and having people be so ignorant about it makes it so much harder to deal with.
I'd like to help everyone! I'd like to raise awareness so those living with it don't have such a hard time trying to make everyone understand. I'd like to raise awareness so that nobody has to realize they have it after its to late! I'd like to raise money to help the research being done so maybe one day they'll find a cure. Lastly I'd like to show all of the narcoleptics out there that just because we have this extra hurdle we have to get over every day of our lives doesn't mean that we should give up on our dreams.
I recently posted about my goal of biking across the country for narcolepsy on a forum in one of those online communities for narcolepsy. While the feedback I got was great and knowing that they were behind me supporting me was amazing most of them still said that this wasn't something they could do.
I don't want anyone to think that doing this means I have a slight case of narcolepsy because thats not true at all. In fact the first time I went and saw my neurologist he told me I had an impressive case...in doctor speak I guess that means its pretty severe. I also have a slight case of cataplexy. Lucky me mine occurs when I laugh....being one of the most experienced emotions that works out well for me. Everyone I'm with says stuff because every time I laugh my head drops and I make this horrible face because I can't control the muscles in my face. I also have to be really careful because its starting to get worse. My legs start to give out and my arms too causing whatever I'm holding to fall straight to the floor. I haven't actually ended up in the floor yet....I'm kind of really hoping it doesn't get that bad. Yeah so back to what I was saying....I'm not doing this because I have a slight case of narcolepsy and it will be easier for me. It wont be easy for me at all. The narcolepsy is something I'll have to fight with every day of my journey. But in accomplishing this I'm hoping to do something great for all of us and to me its worth the struggle for those 3 or 4 months.
The last thing I want to tell everyone is that I recently read about a cyclist who is narcoleptic. His name is Franck Bouyer. Like most of us he was taking a medication to help control his narcolepsy. Unfortunately the medicine he was taking was something that athletes competing like he was were not allowed to take. Until just recently they would not let him compete. This man who suffers from something he can't control is not allowed to do something he loves because he was taking medication to try to allow himself to live as normally as possible. Does that seem fair to anyone? I can't believe they were allowed to keep him from competing.
For those of you who don't know much about narcolepsy....even taking medication doesn't fix us completely. We can try our best to live normal lives but that just is not how it usually works out. Taking medication doesn't affect us the same as it would if someone who didn't suffer from narcolepsy would be affected....OBVIOUSLY!!! That was a pretty DUH thing to say wasn't it? In saying this I mean simply an athlete who didn't have narcolepsy might take the medication and it would have some sort of affect on him. An athlete who has narcolepsy and takes his medication....is just trying to function as normally as all the other athletes starting out. It doesn't enhance his performance! He simply takes medication to make him normal....or as close to normal as we can get.
Alright now that I've rambled and I'm sure if you've made it this far your tired of reading this. But I promise I'm almost done. I just want to tell you all about the actual trip.
I'd like to do it to support narcolepsy. I'd like to get those silicon bracelets to hand out along my journey. I think Dare to Dream would be a great name for my journey and the bracelets!
Dreaming has to do with sleeping which narcoleptics do a lot of but dare to dream also tells us that we should never give up on our dreams. That we deal with this thing others don't have to but it shouldn't hold us back!
I'm hoping to start on my birthday of next year which falls at the end of March. I'd like to travel across the middle part of the country....personally I think because the northern and southern parts are the skinnier parts of the country its kind of like cheating....like cutting corners in gym class. If you're going to do it might as well do it right! Living right in the middle of the United States I guess my starting point can be wherever I want it to be since I'll have to travel there regardless. I was thinking of maybe starting in Virginia and going along the transamerica route. Although that route has me ending in Oregon...why? I have no idea. To me it makes more sense to end in California and thats where I would like to end. So maybe I'll follow that route most of the way and then branch off.
Its a pretty expensive journey and very time consuming. I'm hoping to have either my brother, sister or mom go with me. While they don't suffer from narcolepsy they have to deal with me everyday and I think it would be great for them to be part of this and hopefully it will help them understand what it is I go through.
I'd like to find some way to contact Mr. Franck Bouyer and let him know what I'm trying to do. That my journey is also for him!
I still have to figure out how the whole donation thing works. Do I have to be connected with a charity before I start? Can I just collect donations and then hand them over to the research people myself? Is there any way to get the bracelets paid for? I'm not sure if you guys know this but those things are kind of pricey! I figured I'll need a lot to hand out and for just like 10,000 its running a $4,000.00 bill. I don't know about you but that adds an extra ton to what I have to save for the trip already. I'm not saying I wont because I'm more than willing to! I'd just like to make the trip before I'm 50 and with the money I make saving is kind of hard for me. To get the $4,000 for just the bracelets well thats going to take awhile. Then I need the bike and the cost of the actual trip. Maybe I'll have to postpone my starting date....although thats really not something I want to do.
You see I know me and for those of you that actually know me we know that I'm an idea person. Everything I see, hear, and read sparks an idea. Because I have ideas constantly flowing it usually means that about 99% of them stay just ideas. I jump to the next idea before having time to follow through with the first one. I don't want this to become one of those ideas that got skipped over!
This is something I really want to do! It something thats really important to me!
If anyone has any ideas for my trip or raising money or anything let me know! I appreciate it!
