Queen of Sleep

Living with narcolepsy: a personal journey

Monday brings a small ray of sunshine

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It’s not often media portrays the upside of living with a disability.  Most of the time media seem prefer to show and write about the difficulties and the shocking episodes people experience on a daily basis. Who can blame them? It generates viewing figures and magazine sales. Even “heroic” lifestyle features are mostly masked as freakish reading and yet at the same time it also brings a form of awareness about the disability to the general public. Perhaps, it is necessary to ridicule a disability before it grabs hold of a collective consciousness and becomes accepted, and not feared, laughed at or mocked i.e. sensationalised. When I saw The upside of living with Aspbergers in the online guardian magazine I thought: finally, an article that portrays the upside with living with a disability. It’s not often you find this type of articles that focuses on the positive aspects and manages to send a novel message namely that yes living with Aspbergers may have its difficulties but if you focus on what you do well and find the right supportive environment: you can achieve anything and have a prosperous and fulfilling life.

I know that Narcolepsy and Aspbergers might seem miles apart in terms of disability but there are many parallels here too, for example a tendency towards isolation  because of the potential difficulty to interact with other people and necessity to sleep. Secondly, many friends and acquaintances have had difficulties getting and keeping work because the symptoms of narcolepsy have been misunderstood or feared. Thirdly, I have been advised by psychologists that they can cure me, totally disregarding neurological evidence that the condition is physical not psychological. Next in the article the difficulty being a teenager with a disability is also valid parallel in the case of narcolepsy. Either you struggle to learn how to manage the condition and/or question yourself if you should tell your friends about it or not, or alternatively you live in a complete limbo and you know something is wrong, you know you are different but you can’t put your finger on exactly what. Perhaps this is true for all teenagers busy trying to establish or “find” out who they are but even more so if you have to deal with a disability on top of normal hormonal teenage angst.

Yousif Nur writes towards the end of the article: For all the talk of Asperger’s being an albatross hanging around our necks, it’s not all bad. Why do I say that? Because of our tendency to care passionately, even obsessively, about the things we love dearly. Not wanting to be bound by the rules of society, we may be seen as unique and original.

A person with a disability who know who they are and have developed a good sense of confidence and self-esteem can choose to consciously follow their passions but a person with a disability who desperately wants to fit in the struggle becomes indefinite. We don’t choose, we learn and this is true regardless of disability.

And in response to”may seem unique and original”: yes on the surface they/we may seem unique and original but… I wouldn’t say that we are more unique and original (people with aspbergers/narcolepsy etc) than what you will  find in the general population. Once you get to know a person – the disability literally disappears and you see the person not the disability.

The situations that makes it challenging to interact with others are

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Written by Queen of Sleep

January 17, 2011 at 7:42 pm

Posted in News

Tagged with , , ,

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