The #WakeUpDylan Movement
(aka Lanna starts using hashtags on social media)
#WakeUpDylan first started in March 2015 when I asked my Facebook & Instagram friends to post a picture of their kids, their pets or themselves sleeping using hashtag #WakeUpDylan in honour of National Narcolepsy Awareness Day. Following on the heels of the Ice Bucket Challenge, I was hoping to to use social media to raise much needed awareness and funding for narcolepsy. The response to my post was incredible. Every time I went to check my phone, I’d see more pics of sleeping beauties.
Awareness is the goal. Narcolepsy is real.
Although I didn’t raise much money with the #WakeUpDylan effort, I did raise a lot of awareness. Narcolepsy is a funny disease in that it’s not directly life threatening and it’s not exactly crippling (without question it is debilitating but sadly this is a little known secret only to narcoleptics and the people that care for them) so I always find it challenging to ask people to donate money to the cause. I fully understand and expect terminal illnesses to take priority when people are deciding how to spend their donating dollars. It’s like asking people to donate to the middle class instead of the poor. Middle class families need the money but poor families really need the money.
So my focus with #WakeupDylan is simply to raise awareness. If awareness results in donations, that’s just a bonus prize. Awareness leads to caring, true understanding and acceptance. We’ve all seen a movie where narcolepsy is used as comic relief*. Very few of us, however, personally know someone with narcolepsy. Narcolepsy is very rare, affecting just 1 out of every 2,000 people (amongst Jews it’s even more rare, affecting 1 out of every 500,000 people – jackpot?). Narcolepsy is the cinematic equivalent of Star Wars**. Sure, people have heard of it. Yes, they have some sort of basic understanding as to what it is. But in real life, no one has ever met a tauntaun or an ewok or strom trooper. This is probably due to the fact that tauntauns, ewoks and strom troppers don’t actually exist in the real world, but narcolepsy does. As crazy as it seems to meet Wicket W. Warrick, it seems equally as crazy to meet someone with narcolepsy. That’s what #WakeUpNarcolepsy is all about. Creating awareness and making narcolepsy real.
A day in the life
Now I use #WakeUpDylan as a way to chronicle Dylan’s life in an effort to foster a better understanding of his daily struggles and to shed light on the disease. My hope is that it will help people understand why Dylan often shouts “No!” when you say hello to him, why he gets as much screen time as he does, why we can’t take him to camp on visitor’s day or to shul or to Rylie’s school performances, why he sometimes slurs his words, why he sticks out his tongue and why I completely ignore my previously strict rules of sleep training on him. The narcolepsy cloaks him in a veil of insolence and fractiousness but underneath he is exceedingly good-natured. I want everyone to know the Dylan I know.
#WakeUpDylan Social Media Posts
An exercise in empathy
If you are a parent, harken back to your first month with your newborn (if you dare). Remember constantly waking up at night? Remember that violent call to sleep during the day? Your baby didn’t care that you were horribly sleep deprived and neither did life. Now, remember how bitchy and emotional you were during your baby’s first few months of life? Maybe you were suffering from the baby blues or even depression. Remember not wanting to go anywhere and finding it a challenge just to get out of bed? Remember being unreasonable and cranky and snapping at your loved ones? If only you could have had a good night’s sleep, you would have felt so much better. Welcome to Narcoleptic City.
*In no way do I mean to suggest that comedians should stop using narcolepsy and cataplexy as the subject matter of jokes. Comedy is an equal opportunity asshole where everything is fair game. Black comedy and narcolepsy are practically synonymous. I am always the first to laugh at my own misfortune and frankly blonde jokes and Jewish jokes have grown stale.
**Despite having a son who could read several Star Wars encyclopedias cover to cover before the age of 4, and despite being married to a man who schedules days off work to see the opening of a new Star Wars movie, and despite having a dog named Chewy, I actually know very, very little about Star Wars so please forgive any inaccuracies in my analogy. I also prefer the new movies to the old ones. Don’t hate me.
3 thoughts on “About #WakeUpDylan”
This BLOG is phenomenal! You are… Amazing! Not only are you having to live this ‘war’ against narcolepsy in your own home every day (and with a FOUR year old no less!), but you are fighting it for people like myself too!
Obviously the goal is a cure (Agh! Can you imagine?!!), but apart from the daily battle to achieve some quality of life & not just sleep until I die, I personally find the lack of understanding from others the most difficult aspect of having narcolepsy.
Creating awareness is so vital! And I cannot thank you enough for your efforts.
If others’ understood narcolepsy as a debilitating, chronic illness, and not someone being lazy, or not exercising sufficiently, or not eating correctly, or (my favourite!) not going to bed early enough (judgements usually made without knowing how motivated I am, what exercise I do, what I eat or what sleep routines I keep!), it might be possible to at least feel supported rather than defensive. If people understood, it might be possible to not experience that feeling of polite skepticism after having explained the illness, where you know by the dismissive ‘acknowledgement’ of your explanation your audience is STILL thinking, “Yeah, yeah! We’re all tired. Stop complaining!”
I think by breaking things down into the many daily struggles a narcoleptic & their loved ones must endure and overcome, it makes the debilitating nature of the disease more… Accessible! …More real to others.
I sincerely wish you and Dylan and all of your family the very best… I will be following your journey via your blog from Australia!
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I could not agree with you more Amy. You are spot on. Thanks so much for following!