Dear Sarah,
All right yes I agree we need to change doctors this guy is a little to excited about having “found” me and rather excited to be around someone with “Narcolepsy”. Thankfully diagnosis day only lasts 24 hours and we can work towards finding a different doctor soon. Hang in there, I know you are not nearly as excited or feeling any of the same emotions as this guy breaking the news.
Stop and breath, that feeling you can’t identify…that’s relief. I know you feared having nothing wrong with you, or having nothing show up from the study, but here you are with the dreaded diagnosis and a sense of relief. You aren’t crazy, you aren’t losing your mind and you actually do have something wrong. Yes I know it’s an illness, it’s not curable yet, but hey knowing you have Narcolepsy at just age 14 is a blessing in disguise. The knowledge and diagnosis has arrived; it’s up to you now as to what you do with that awareness.
I wish I could be there to walk you through the transitions and changes you are about to face. Your parents; don’t fight them, those annoying nap suggestions and bed time reminders are because they have your health in their best interest. Trust me they realize how old you are; they don’t like reminding you anymore than you like hearing it. Friends will walk out of your life, but hang on tight because in time you will find amazing friends to lift your spirits and embrace your toughest days.
Don’t fight your narcolepsy; don’t pretend you don’t have it. Be honest with yourself and be responsible. You’re responsible for your health, so when you start that head bob, girl just give in and go find a couch, a bed, or the back seat of a car. The better friends you are with narcolepsy the nicer she is. She can be a real “B” word when you cross her the wrong way. Watch out for those famously fun and dysfunctional all nighters with your friends; watch out for that sugar high that comes with the crash. Narcolepsy will take your temporary fun and missed naps and take you down with her. Watch your back, she’s been known to stab.
If you take anything away from this letter I want you to take away the simple and utmost important thing in life…don’t let anyone or anything stop you from chasing your dreams and living your best life. Don’t let this Narcolepsy or Cataplexy in still a fear to live life courageous and daring just like you always have. Let that bold personality you have guide the way, make sure you don’t start believing what you read. All this “I can’t because I have narcolepsy” is the biggest load of $%#! you will hear.
You, Sarah are about to embark on a life changing journey that will mature you, strengthen you and shape you as a person. Take it one day at a time, take it with ease and let people in. Take this time to educate, inspire and change the way the world looks at narcolepsy. Change your world, change your life and you might just change someone else’s.
Love and Naps,
Sarah xx
Thank you to Julie Flygare for this wonderful idea. The reflection of how far I've come and the realization of the gains in the narcolepsy community since 2007 was empowering and uplifting.
Thank you, Sarah for this insightful letter looking back at your diagnosis day. You were diagnosed at such a young age, I can only imagine how challenging this has been to incorporate narcolepsy into your life successfully as a teen. I am still learning to give in and take naps when my body calls. Your description of narcolepsy coming back to "stab you in the back" for a missed nap is so very true. This will help me remember to take good care of myself!
ReplyDeleteThanks again for joining the blogathon.
Sending wakefulness and big smiles your way,
Julie
Thank you Sarah for sharing your story. It was a true blessing for you to be diagnosed at 14. You avoided the struggles of the awkward teen years of the mis/not diagnosed narcoleptic. So many don't get this chance. I wasn't young, but did have a sleep study confirm narcolepsy only a year into my symptoms. Very thankful for that. Take care and keep up the great work helping others know about narcolepsy.
ReplyDeleteFrom one Sarah with Narcolepsy to another I just wanted to say that this letter is something I wish every Narcoleptic could read upon being diagnosed. I have read through much of your blog after being diagnosed myself and want to thank you most of all for the inspiration that an everyday life can be spent up and out of bed! I am excited to keep following you story, you have helped me decide to share mine.
ReplyDeleteTake care,
Sarah
this made my day. thank you for the kind words. I will begin to read your blog. :) keep in touch.
DeleteVery well written letter to yourself, Sarah. Glad to hear you're doing well and keeping your head up (pun intended). I've been reading your last few blog entries while I take a break from studying for my last midterm in the morning and I'm glad I stumbled upon your Facebook post which lead me to your blog. Keep up the good work :)
ReplyDeleteGreat letter! Can't wait to share it with my daughter!
ReplyDelete