“Technically, the glass is always full” – The Realist
When your 4 year old son has severe narcolepsy and cataplexy and you yourself have narcolepsy, it’s devilishly easy to become pessimistic, cynical and jaded. It’s nearly impossible to look at the missing hypocretin in our brains as being half full rather than half empty. I’m guilty of falling into that negative head space myself just before and right after Dylan was officially diagnosed but eventually my equilibrium was restored and I returned to my opportunistic realist self. I am comfortable being a realist. I’m too easy-going and laid back to be a pessimist and I am far too level-headed and snarky to be an optimist, despite purchasing the occasional lottery ticket. I personally do not relate to either extreme, but I must have pessimistic tendencies because I have always preferred the company of Debbie Downers to Pollyannas. I have little patience for chronically optimistic fools. We all know the type. The ones that are far too cheerful in the mornings and view anything negative as an exciting opportunity to challenge themselves. No. Just no. I don’t need those happy-go-lucky people in my life, especially in the mornings. I’d much rather deal with grumpy, cantankerous people given the choice. But sometimes, when things are so dire, and you’re sick of crying, the only thing left to do is laugh. If we break this thought up into its most basic components, choosing to laugh when you should be crying is a characteristic of an optimist. So after writing my last post, where I shared my preference for making light of narcolepsy instead of treating it as a dark curse, I started to wonder if perhaps in my old age, I am becoming an optimist. Is that a thing? Is that something that happens? I expected wrinkles and senility and grey hairs down there but I did not see optimism coming. I always thought people got more miserable with age but perhaps this is some sort of Benjamin Button business? Conversely, maybe my dark sense of humour is just cynicism in disguise? Maybe I’m actually becoming more pessimistic with age? My most revered comedians are rather sardonic and sarcastic, I enjoy laughing at the misery of others and I can find humour in debilitating neurological disorders. That all sounds pretty cynical. Or maybe, just maybe, I find optimists so unbearable that I’ll find any excuse to argue against my increasing likeness to Kenneth Parcell.
“Don’t worry, be happy” – Bobby McFerin
Whether I’m Mr. Grumpy or Little Miss Sunshine, which, let’s face it, probably has more to do with the day of the month than some deep seeded personality traits, the reality is I’ve started coping better with Dylan’s diagnosis and even almost embracing it. Don’t get me wrong, narcolepsy sucks and I’d happily give Mr. Bear’s left arm to cure Dylan of his symptoms but since no one’s trading body parts for cures, for my sanity, I have to make the best of it. Sometimes that means willing comedians to make fun of my son’s ailments and sometimes it means looking at what I have in a new light. We constantly hear about the challenges of living with narcolepsy or raising a child with narcolepsy (and by “constantly hear” I am of course referring to people that read my woe is me blog) but rarely, if ever, do you read anything about the joys of narcolepsy. While it’s certainly true that the negatives far outweigh the positives, that doesn’t mean everything about narcolepsy is horrible. There are actually moments of jouissance and insightfulness. It’s like the movie Little Nicky. Little Nicky is an awful movie yet there were a handful of comedic gems throughout. When I think about the movie, it’s the funny moments like Hitler picking a pineapple for the Devil to shove up his ass or Little Nicky realizing that “Popeyes chicken is fucking awesome” that stick out in my mind. I can barely remember any of the bad scenes, even though they made up the vast majority of the movie. I can choose to think of Little Nicky as a terrible movie or as a movie with a few hilarious scenes. Likewise, I choose to think of narcolepsy as the pineapple and Popeyes.
“Perspective is everything” – Unknown
So what’s so good about narcolepsy? Well, for one, it completely changes your perspective. Your perspective on happiness, your perspective on life and your perspective on family, I would argue, for the better. Whether you’re personally struggling with narcolepsy or you’re struggling to raise a child with narcolepsy, you can’t help but change the way you view things. Your priorities change and you suddenly understand the true meaning of the phrase “money doesn’t buy happiness”. I’m embarrassed to admit that in the past, pre-narcolepsy, a lot of my happiness was tied to materialistic nonsense. Instead of creating happiness, I bought it. But happiness from a new purse or new boots or even new diamonds is short-lived and fleeting. Eventually the purse goes out of style, the boots become scuffed and the diamonds shine less brightly. Pretty new things are to happiness what a chocolate bar is to energy. Relying on stuff as your source of happiness is like relying on drugs for a high. My source of happiness and my perspective on happiness shifted dramatically when Dylan became sick. The material all became instantly immaterial. I no longer got the same high from a new designer something-rather that I once did. Material things create a temporary, artificial high that is not nearly powerful enough to breakthrough the heartache of dealing with a chronic illness. No amount of stuff could raise my spirits. And surprisingly, all of the things that did raise my spirits were entirely free – a nice long cuddle from Chewy, an “I love you so much Mommy” from my kids, a hearty laugh from a crude Mr. Bear joke, an unexpected visit from a concerned friend. Health and quality time with family and friends are now the sources of my deepest and truest happiness. To be honest, these things always brought me the most joy but I didn’t realize how powerful the simple pleasures of life were until the complicated pleasures lost their effect. Things are replaceable; people are not.
“If you are going through hell, keep going” – Winston Churchill
Dealing with narcolepsy, both for myself and for Dylan, has taught me that I am a cockroach. I will survive and thrive in the face of anything. I have discovered I am at my best in stressful situations that require perseverance and tenacity. I have come to realize these are my strengths, particularly when it comes to my cubs. Whatever my kids need, I will get for them, no matter how difficult or how challenging. My mindset has changed. I no longer wonder “can I do this?” but rather “how quickly can I get this done?” I refused to wait months and months between specialists visits so I used my powers of persuasion to find a way around it. I didn’t accept Dylan’s initial diagnoses of iron deficiency and sleep apnea, so I took matters into my own hands, educated myself and properly diagnosed him myself. I was fed up with the blank stares and perplexed looks I got when I told teachers Dylan had narcolepsy so I created my own informational video. I was frustrated with the general lack of knowledge and understanding about the disorder so I made it my mission to make narcolepsy awareness ubiquitous and the term ‘narcolepsy’ as commonplace as insomnia or sleep apnea. Whatever needs to be done, I am now confident will get done. I’ll continue to fight the good fight for D and if history repeats itself, as it’s wont to do, I will come out victorious.
“A non-writing writer is a monster courting insanity” – Franz Kafka
I like to write. Who knew? Not me, not until I started putting pen to paper to raise awareness about narcolepsy. Before then, writing was merely my preferred method of communication with friends. I have always had a deep appreciation for the written word and I’ve long admired authors with the ability to be effortlessly witty but for some reason it never occurred to me to try my hand at wordsmithing and certainly not for general consumption. Turns out I quite like it and I find it rather cathartic. Writing has become a way for me to vent my frustrations, much like the scathing email you send in haste before taking the time to rationally consider the consequences. It doesn’t always end well, but it always feels good to send. Before Dylan had narcolepsy, I didn’t have a topic to write passionately about. Of course I could wax poetic about my children all day long, but so can everyone else and it’s not terribly interesting to anyone except myself. The need to spread awareness about narcolepsy ignited an advocacy spark within me, something I likely never would have discovered or developed otherwise. I knew I’d never have the stamina to run a marathon, I knew I’d never have the willpower for a fast and I’m too vain to shave off my hair in support of a cause so the traditional avenues for awareness were closed to me. Driven by sheer laziness and a deep love for my son, I decided to start a revolution from my bed. It seemed perfectly apropos especially given the cause. I woke up one unmemorable morning, opened my laptop and just started typing. I spent the entire day in bed writing; partially because I had a lot to say but mostly for the abreaction it provided. And just like that, narcolepsy went from being my most despised nemesis to my most inspiring muse.
“Whenever I think about the past, it brings up so many memories” – Steven Wright
Years from now, when I think back on these early years of navigating through narcolepsy instead of thinking just about the heartache I’m going to choose to remember the new perspective I gained, the perseverance I realized I had, my newfound love of writing and the painfully prickly fruit used to sodomize the Führer.
**PLEASE NOTE: ‘Popeyes’ was intentionally left without an apostrophe to indicate possession because the restaurant itself does not use an apostrophe in its name. **