{"id":441,"date":"2013-10-18T09:00:01","date_gmt":"2013-10-18T14:00:01","guid":{"rendered":"http:\/\/disabilityinkidlit.wordpress.com\/?p=441"},"modified":"2020-11-04T16:02:04","modified_gmt":"2020-11-04T16:02:04","slug":"bethany-hagen-the-real-narcolepsy","status":"publish","type":"post","link":"https:\/\/disabilityinkidlit.com\/test\/2013\/10\/18\/bethany-hagen-the-real-narcolepsy\/","title":{"rendered":"The Real Narcolepsy"},"content":{"rendered":"

I was officially diagnosed with narcolepsy after I was sixteen, having done a full-night sleep study and a multiple sleep latency test (MSLT). When we’d first approached a doctor about my sleeping issues \u2014 insomnia, terrifying periods of sleep paralysis, falling asleep in class \u2014 my dad and I scoffed at the suggested diagnosis of narcolepsy.<\/p>\n

We both figured that all of these problems stemmed from my insomnia and nothing else.\u00a0 But in retrospect, the diagnosis fit like a glove.\u00a0 Since I was a girl, I suffered from waking hallucinations, vivid dreams, a constant urge to nap, the ability to sleep twenty or more hours in a single day.\u00a0 It turned out that I had (and still have) a fairly severe manifestation of the disease.\u00a0 In fact, my new sleep doctor (sigh<\/em>)\u00a0laughed when he read the results of my most recent MSLT, because in his words, he’s “never seen a sleepier person.”<\/p>\n

Narcolepsy is serious disease that \u2014 undiagnosed or untreated \u2014 can lead to unemployment, fractured relationships and, probably most importantly, injury or death.\u00a0 I’ve fallen asleep while driving and crashed into a pasture fence; in college, I once had a sleep attack while walking down a set of campus stairs, slipped and tumbled unconscious to the stone landing. \u00a0I say this to illustrate that while narcolepsy is principally portrayed in pop culture for its power to amuse, it also needs to be taken seriously.\u00a0 Movies like Rat Race<\/em>\u00a0and\u00a0Deuce Bigalow<\/em>\u00a0not only perpetuate an unrealistic depiction of narcolepsy (which is a very nuanced disease with degrees of severity) but they also add to the idea that narcolepsy is not a “real” disease.\u00a0 It’s something funny, something played for laughs, or it’s a plot device in books like\u00a0Sleeper Code<\/em>.\u00a0 And if something’s not real then it can be controlled, right?\u00a0 And if it can be controlled, then people with N are just choosing to be sleepy all the time … then they can help it and they should know better.<\/p>\n

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\n\t\t\t\t\n\t\t\t\tBUY ON BOOKSHOP<\/span>\n\t\t\t\tBOOKSHOP<\/span>\n\t\t\t<\/div>\n\t\t\n\t\t\t\n\t\t\t\n\t\t\t\t& support independent bookstores\n\t\t\t<\/span>\n\t\t\t\t<\/a>\n\t<\/article> \n\n\t<\/center><\/div>Bad depictions in popular culture foster the narrative of the lazy narcoleptic: Sleepy people are just lazy people who need more discipline.\u00a0 Their torpor is a bad habit.\u00a0 They are late\/unproductive\/lethargic employees.\u00a0 They are uncaring lovers.\u00a0 They are absent friends.<\/em>\u00a0 And so on and so on.\u00a0 But actually, no one with narcolepsy\u00a0wants<\/em>\u00a0to be late to work or to nap through a date.\u00a0 Our brains are cannibalizing the protein hypocretin that makes our sleep centers function, and no treatment, no matter how effective, can stop that.\u00a0 It’s a miserable disorder that robs you of energy and opportunity.<\/p>\n

But I don’t mean to be all negative.\u00a0 There have been some very good works of art featuring narcolepsy; books like Pete Hautman’s\u00a0Godless<\/em>\u00a0(where the character suffers from possibly undiagnosed narcolepsy or idiopathic hypersomnia,)\u00a0The Mysterious Benedict Society,<\/em>\u00a0and movies like\u00a0My Own Private Idaho<\/em>\u00a0either approach narcolepsy in a gentle, but accurate way, or in\u00a0Idaho’s<\/em> case, in a painfully compelling way.\u00a0 And in a world where an adult man can seriously ask me if narcoleptics are like fainting goats (true story), I’m thinking we need more books and movies that approach the illness as it truly is \u2014 something layered, something difficult, and yes, sometimes funny too.<\/p>\n","protected":false},"excerpt":{"rendered":"

Bad depictions in popular culture foster the narrative of the lazy narcoleptic:\u00a0They’re lazy. They’re late\/unproductive\/lethargic employees.\u00a0 They’re uncaring lovers or absent friends.<\/em>\u00a0 And so on and so on.\u00a0<\/p>\n","protected":false},"author":22,"featured_media":442,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[57],"tags":[106,107,108],"genre":[],"age_category":[],"disability":[109],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/441"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/22"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=441"}],"version-history":[{"count":0,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/441\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/442"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=441"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=441"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=441"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=441"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=441"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=441"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}