Showing posts with label julie flygare. Show all posts
Showing posts with label julie flygare. Show all posts

30 September 2015

#Sleeptember, meet Homer Simpson, Narcoleptic

If you watched last Sunday night, you know that America's favorite dad has been diagnosed with narcolepsy. The serial sleepyhead can no longer blame Duff beer for putting him to sleep: a medical examination following a workplace accident revealed his daytime sleepiness to be caused by a neurological sleep disorder known as narcolepsy.

View the episode, The Simpsons - Season 27 - Episode 1 - "Every Man's Dream," here

The curator of SleepyheadCENTRAL has a few thoughts about bringing this groundbreaking subject to popular culture:

1. Any time you can bring awareness of health issues before large, varied populations, you are opening up space for a dialog and better understanding of the disease being highlighted; even if/when the portrayal of the disease is not completely inaccurate or there are other flaws in the narrative, it's still a jumping off point and that's pretty important.

2. The Simpsons is poised to not only bring critical attention to the very real sleep disorder that is narcolepsy, but in broader fashion, to show insight into what it is like to live with invisible illness.

#SLEEPTEMBER
3. Even if The Simpsons is considered comedic territory, humor is often one of the best ways to approach difficult subjects. Though narcoleptics were (and still are) wary of the way narcolepsy is portrayed in the television show--it has been the subject of ridicule since the days of Mr. Magoo, after all--at least there might be opportunities for more public education slipped in between funny scenes to help explain what narcolepsy is, why it is serious and what can be done about treating it so people who have it can lead lives as normally as possible.

4. Television and film often get some of the details wrong when it comes to subjects from the realm of science. But we have to remember that these are fictionalized visual narratives with specific goals to meet within a metered course of time and often the choices writer and directors make in teleplays and screenplays are compromises between accuracy and information relay as a form of transition. We cannot expect The Simpsons to be the best way to learn about narcolepsy but it might be the most widely distributed way to get the conversation started and maybe this is what matters most. You have to start somewhere... it may as well be before a bunch of avid viewers.

5. That Homer would be portrayed as using his diagnosis as a crutch to withdraw from his daily duties is a little troubling, nonetheless. People with sleep disorders and fatigue issues often have lives with full agendas--people to care for, jobs to go to, households to maintain, social lives to engage. Their conditions often mean they have to bow out of activities or sleep when they should be doing things, and their friends and family may often interpret this behavior as laziness or an excuse to shirk responsibility. However, narcolepsy is not the kind of illness you just power through. You can't. The brain will shut down biochemically when triggered and you are left to recharge it, and these moments of activity and recharge are random or, at the very least, incompatible with the schedules and time frames of people living normal lives. Listen, we all know Homer has many flaws, one of which is his general laziness, which has nothing to do with narcolepsy. But to put the two together to show cause and effect is a real disservice to many people who struggle to keep up with normal life because of their conditions and who are routinely judged by their loved ones, coworkers and perfect strangers as being lazy when in fact they are ill and cannot help themselves.

6. I do wonder about a rise in narcolepsy "self diagnosis" as a result of this new subject matter. People may go to see "Dr. Google," look up narcolepsy, consider the symptoms, and decide for themselves that they have narcolepsy. Here's the deal, though: you cannot treat narcolepsy without a doctor's examination, which will include an overnight sleep study and a series of daytime nap tests the following day (at the very least). Despite what they show in the episode of The Simpsons, you are not likely to receive a spinal tap checking your hypocretin levels as this test is expensive and has risk factors. The sleep lab diagnostics are just as accurate and a lot less expensive, plus they will identify any hidden sleep problems you might be experiencing without your knowledge. Which would be a good thing, too. But don't think that you will be able to ask for any of the medications they use to treat narcolepsy without getting an accurate diagnosis first: these are dispensed under tight surveillance via specialty pharmacies or otherwise extraordinary protocols.

7. For the record, narcolepsy is usually identified earlier in one's life (late teens to mid-twenties). Still, Homer's late discovery of his condition isn't unrealistic: some people go for years before properly identifying their narcolepsy, as much about it has been poorly understood until only recently.

8. What is also pretty accurate is the strain that having narcolepsy can place on a relationship, especially if the person suffering has to stop working or contributing to the household because of it. No wonder Marge and Homer considered separating; it happens to many couples when one of the two is suffering a chronic illness that threatens economic well being or a sense of unity at home.

Read more about what others think about Homer's new diagnosis here and what it might mean for public awareness of narcolepsy:

25 August 2014

Sleep in the Media || Book Review || Wide Awake and Dreaming


Wide Awake and Dreaming: A Memoir of Narcolepsy
Julie Flygare

Who should read this book?
Anyone with an interest in compelling memoirs would find this book completely fascinating and--ironically perhaps--eye opening. Julie Flygare tells the curious tale of her entree into the quasi-real world of narcolepsy: the strange markers of its onset, how it progressed while she was up to her eyeballs in law school studies, its impact on her social and work life, and where her experience with this rare disorder has taken her since she graduated with a law degree in 2009.

Flygare is now a leading spokesperson for the Narcolepsy Network and helped to establish the first Sleep Walk in Washington DC in 2011. Perhaps one of her most important jobs as spokesperson for sleep disorders has been her collaboration with Harvard Medical School researchers over the last four years in the form of a 5-hour educational workshop based on her narcolepsy experience, now a required educational component for all Harvard Medical School students. It's no small feat to train medical practitioners to recognize the value of sleep: currently, many if not most primary care physicians and specialists in all branches of medicine overlook the critical role sleep plays in endocrinological, neurological, psychological, respiratory, immunological and cardiopulmonary function. Sleep is a whole body process that cannot be ignored or replaced with medication.

Why should you read this book?
I would personally give this book to every person I know who has ever made a wisecrack or insensitive comment about sleep disorders (narcolepsy, in particular, with its unfortunate and insensitive "Mr. Magoo" representation in our sleep-deprived culture) so that they can understand how real, how challenging and how mystifying this illness is. My own experiences are extremely mild compared to Flygare's, for which I am ever so thankful. At the same time, living with this invisible and incurable condition has its own challenges, not least of which is the balance one must strike between the needs of the body and mind while living in a culture which doesn't value sleep and which tends to judge those who take sleep seriously as somehow being lazy, stupid or unstable. Flygare's book is an important entry in the chronicles of contemporary sleep medicine.