Why?


Shortly after Dylan was diagnosed with narcolepsy and cataplexy, I became somewhat of a recluse. Partially because I was grieving, partially because I was feeling sorry for myself but mostly because I was profoundly jealous. I often used the word “jealous” loosely as a hyperbole for “I want that” but never before had I truly experienced actual resentfulness-inducing jealousy. It was not pleasant and I did not like it. Jealousy and envy, classic contraindications to my normally mudita personality, caused adverse side effects I was ill prepared to fight.

When D was first diagnosed, I kept asking myself “why him?“, “why me?“, “why Rylie?“, “why Mr. Bear?” I’m no angel, so maybe I’ve earned my sorrows, but at the age of 3, Dylan was as pure and innocent as they come. What could he have possibly done to deserve this? The answer, of course, is nothing. Because life doesn’t work that way. Dylan just happened to be unlucky in the narcolepsy gene pool (but clearly very lucky in the good looks department) and our family suffers the consequences. Mr. Bear has a son who, in all likelihood, will never take after his athletic abilities. Rylie has a brother far from the one she ever imagined she would have. I have a son who challenges me daily. And Dylan has a neurological disorder he’ll have to battle for the rest of his life. Like many things, the fact that D has narcolepsy is a mere coincidence, a stroke of bad luck. But somehow, it just didn’t seem fair and I couldn’t make sense of the situation. As a child, my mother taught me if I ever didn’t understand something, I should keep asking questions until I did (which as you can imagine, made my teachers exceptionally happy). And so I became consumed with asking “why?

“Why is her son healthy and mine isn’t?”

“Why does she get three healthy kids and I only get one?”

“Why does medication work for her son but not for mine?”

“Why are gold Corolla drivers the worst? Furthermore, is it the car that makes them bad drivers or is it that bad drivers seek out gold Corollas?”

Unfortunately, the questions never helped me to understand. The only purpose they really served was to provide the perfect breeding ground for jealousy, envy and frustration.

Social interactions with friends became increasingly difficult because, inevitably, conversations would centre around two topics: 1) our children, and 2) Dylan’s condition. While the first topic seems rather benign, hearing about the completely ordinary childhood of other kids was a painful reminder of Dylan’s complicated life. Hockey practice, the school musical, camp, sleepovers, birthday parties, vacations and even family outings to the mall left me pink with envy (green doesn’t suit my complexion nor my aversion to clichés). I was jealous of my friends, I was jealous of their healthy kids, I was jealous of their mundane lives, I was even jealous of people who weren’t jealous. Topic #2 was always a bit easier, perhaps because I knew it was necessary for the sake of awareness, but it had the same affect as topic #1 in that it caused me to agonize over Dylan’s genetic misfortunes. Logically, I understood that people asked about Dylan  because they were genuinely concerned and because narcolepsy is such a mysterious disorder but illogically, I resented them for not staying current on recent advances in narcolepsy research, for not reading my blog posts religiously, and for not committing every single article I posted to Facebook to memory. Jealousy is like PMS on steroids. It makes you miserable, irritable, overly-sensitive, completely irrational and a raging chocoholic. And just like when you’re PMSing, all you want to do is stay in bed and will the pain to go away.

Truth be told, not all of my friends were living an enviable life of bliss. Many of my friends were struggling with their own issues like acrimonious divorces, serious financial troubles, and debilitating mental illnesses (let’s be honest though, anyone with kids is suffering from some sort of fucked-in-the-head syndrome). Normally I would be sympathetic and understanding but in my jealousy induced rancor, I was simply apathetic. Instead of envying them, I envied the comparative triviality of their problems. I found myself secretly competing with my friends for some non-existent Worst Life Award that I of course always biasedly won. Like Kristin Wiig’s Penelope character from SNL, I was silently one-upping everyone with my more impressive, more serious and more depressing life struggles (whilst twirling my hair). No problem, no issue, no heartache could possibly be as tragic as mine. Who cares if your marriage is falling apart? Your kids are healthy. Who cares if you might lose your job? Your kids are healthy. Who cares if you’re on 15 different narcotics? Your. Kids. Are. Healthy! I’d divorce Mr. Bear and give away all my money in a heartbeat if it meant getting the old Dylan back. I’d even give my sanity if narcolepsy and PMS hadn’t already stripped it away from me.

In an ostrich-like attempt to avoid suffocating from envy, I carefully eschewed all jealousy evoking catalysts. Essentially, that meant secluding myself from the world because I was jealous and envious of almost everyone around me, particularly those lucky bastards who won the healthy children lottery. When you’re having difficulties conceiving, it seems everyone around you is announcing a pregnancy. Similarly, when you’re raising a child with narcolepsy, it seems everyone around you is blessed with healthy children. It didn’t take long for this social butterfly to become a hermit, foolishly thinking I was pseudo-safe from the indignation of jealousy in the confines of my bear den.

It has now been just over a year since Dylan was diagnosed with narcolepsy and cataplexy. Although I occasionally continue to ask myself “why“, I have finally concluded that poor car choices do not create bad drivers but rather, bad drivers have an unusually high affinity for gold Corollas.

 

3 thoughts on “Why?

  1. As much as I want to sympathize, imagine the roles being reversed. Being a new mom and being diagnosed, myself, with Narcolepsy the same year has not been what I pictured for my life. Your son is lucky to have mom that cares and worries. I hope he never has to feel like he didnt live up to the expectations you stated that you had for him. Yes, there will be things he wont be able to do. But, there will be so much more he will be able to experience and do that might not have been part of the plan. I agree, its not fair, especially for the one suffering from Narcolepsy. Im sorry if this offends you. All I could really do while reading this was get a little irritated at how this revolved around how it made you feel and not so much Dylan. Just for a moment, put yourself in my shoes. Narcolepsy, not one but three mental illnesses, severe financial difficulty-poverty (not able to work right now and drowning in student loan debt), in an unmarried and very rocky relationship, doctors that contiually treat me like im just a drug seeker, all while raising a toddler fulltime. It could be a hell of a lot worse. Love him unconditionally and never make him feel like he is not good enough or a disappointment.

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    1. Thanks for reading! I actually have narcolepsy myself so I can completely relate to both you and my son. I didn’t think it important to mention because I don’t care for myself even half a percent as much as I care for my son and daughter. I am not in anyway disappointed in him. Quite the contrary. He impresses me with all he does. But I still don’t think it’s fair. I don’t think it’s fair he can’t play with his sister without falling. I don’t think it’s fair he can’t get a restful night’s sleep. I don’t think it’s fair he has to be constantly medicated. And my heart hurts for him. Of course it could be worse. It always could, but that will never stop me from m wishing all the best things in the world for my little man.

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