16 Jun My Nashville Wake Up Call
By Danielle Brooks
I want to first thank Wake Up Narcolepsy for hosting Wake Up Nashville on June 21 and for giving me the opportunity to write a guest post to share my story with others.
My family and I had such a great time in Nashville! We will cherish those memories and the experience forever. We had a chance to listen to great music, and everyone had the chance to participate in the silent auction, which included everything from music memorabilia to a four-day cruise! My little sister and I got a bunch of signed Taylor Swift items and a signed poster/CD from Jana Kramer! The Bridge Building was an absolutely incredible facility, which made the night even more beautiful!
I had been looking into starting a blog, especially for teenagers like me with narcolepsy, when I came across Wake Up Narcolepsy on Twitter. I saw there was an event coming up and it was fairly close by, well, 5 hours away. I asked my parents if we could make the drive, and they were on board and excited.
At that time, I had only met one other person with narcolepsy. What I was looking forward to the most in Nashville was actually talking with other people like me, and that was by far the best part of the night. I talked so much that I forgot to eat. Whoops! It was totally worth it! My family and I can’t wait to attend next year’s Wake Up Nashville. My little sister is even thinking about entering the song-writing contest!
I met and talked all night long with two other kids my age who were just like me. We talked about our diagnosis, schools, friends, medications, and different experiences we’ve had. My favorite was when we talked about our vivid, indescribable dreams, which no one but we narcoleptics could comprehend.
The whole reason I went to this event was because I want to be a part of something bigger than myself. I want to help and encourage others with narcolepsy and show them that you choose the life you live.
I have always identified myself as a swimmer. I started at the age of five and fell in love with the water. I began swimming competitively and it turned out I wasn’t too bad. I swam almost every day of the week and by age 14 I had AAAA times. Big dreams start to fill your head when you are improving with every meet.
Then slowly, everything started to change. I began to struggle to even match my previous times; I was getting slower. Practice became a nightmare. I was so exhausted after my dry-land workout, I began to dread the actual swimming part of my training. I felt like a wilting flower. It got so bad, I was forced to abandon my dry-land training. Despite my protest, my parents thought I had just lost interest, as so many teenage swimmers do at my age. My coaches wrote me off as lazy.
It would take a full year to finally figure out what was happening to me. During that year, I spiraled down and down, not knowing why I couldn’t stay awake for longer than a few hours, why school became a struggle, why my friends called me “Bobble Head,” why my knees buckled uncontrollably without warning, and why everything had changed and I could no longer participate fully in the activities of my life. Any narcoleptic can probably relate.
My name is Danielle Brooks, I am 17, a rising junior in high school and I have narcolepsy with cataplexy. I developed N/C at age 14 and was diagnosed a year later. I am now on Nuvigil and Xyrem, which have made my life so much better. I was one of the lucky ones to be diagnosed quickly, whereas many people go years before being diagnosed.
When you’re 14 years old and a disease like narcolepsy with cataplexy lands on your head, you are just relieved to finally have an answer to why you are so tired all the time. You are not really old enough to understand the full impact it will have on your entire life. But, you grow up quickly and learn that nothing for you will ever really be normal again.
Living with narcolepsy, as many of you know, is a struggle, and everyone handles it differently. When I was diagnosed, I made a promise to myself that this disease wouldn’t change who I am, but instead would hopefully make me a “better,” stronger person.
The way I think of it is that God wouldn’t give me anything that I could not handle, so why not make the best out of my situation. There were times when I wanted to quit and give up, but I still choose to laugh, even if I look like I am drunk or slump to the floor in front of my friends at those times.
I still play with my little sister, who is quite the comedian. I still watch sad movies and comedies. I still work hard at being a “normal,” involved teenager. I go to school. I try to get A’s. I swim two to three hours per day. I study every evening, hang out with friends on the weekends, and volunteer at many activities in my community. I even participate in the Miss Buford Pageant each year. And yes, the Sleeping Beauty jokes are common, but aren’t we all princesses? That is just who I am. I will never let my illness define who I am.
This disease has taught me a lot about my body and brain, but it has taught me even more about myself and who I am supposed to be and how I want to handle adversity. My goal is to set an example of strength and optimism for not just other narcoleptics, but those who have fallen victim to any disease and have lost all hope. I want to restore hope to them, to encourage others to embrace who they are, and inspire them to follow their dreams and open their eyes to their countless possibilities.
I want people to know that it is okay to ask for help from your family and friends. You do not have to go through this on your own. I want to serve as an outreach and example for others to ask for help when needed and then to succeed.
I believe my biggest accomplishment this year is not in school or with my swimming, but in learning to be open about my disease and trying to spread my knowledge about narcolepsy and cataplexy. Going to Wake Up Nashville was a big step that my family and I took together. This blog post is my next step and I hope that it will encourage others to reach out, take risks, and be themselves.
“With your mind power, your determination, your instinct, and the experience as well, you can fly very high.” – Ayrton Senna