However, every so often, I do a web search either across the whole web or within specific domains on keywords related to narcolepsy. This is partly to keep abreast of the research situation, and partly to get a feeling for the current public state of knowledge (which is not always correct). In doing so, I have become increasingly aware that the material is largely either alt-med types offering “advice”, or confessionals from people who are seriously struggling with it. Concerning the former, such as this appalling idiot, I have little to say — well, actually I could say a lot, but will hold my tongue for now. Sufficient to observe that I am an atheist and a sceptic, and consider alt-med in all its forms to be at best wishful thinking and usually a manipulative, cynical industry preying upon the desperate. For the latter, those struggling with the disorder, I have great sympathy — there is no denying that it is a buggeration of spectacular proportions. Indeed, the main reason against writing this is that I do not wish to denigrate the problems that other people are experiencing. But the combined effects of their writings, and a series of atrocious television documentaries that seem to have gone out of their way to select the most damaged participants, and then exercised an almost pornographic level of voyeurism in displaying them as victims, have increasingly made me feel that I want to put a different voice out there: a description of a pretty successful, enjoyable existence in which narcolepsy necessarily plays a significant role, but does not dominate. It concerns me that anyone new to the disorder may, on searching, find nothing but negativity and victimhood. I want to put an alternative perspective out there.
One thing this blog will not do is make recommendations as to how you should live your life, or deal with your condition. I have absolutely no idea of how to deal with narcolepsy if you are anyone other than Stuart Brown: what works for me may not work for you, and I am certainly not qualified to offer advice on the medical issues. In particular my decision to remain basically unmedicated frequently raises eyebrows in the medical community (as and when I interface with it), and given the physical risks involved is not something I would ever actively recommend to someone else. If you chose to take on board some of the ideas here, then good for you; if you chose not to, then equally so.
Why the blog format?
My intention is not to write a diary; I do not wish to provide a blow-by-blow description of “my life with narcolepsy” and it should become clear from later posts that to do so would be anathema to my approach to the condition. The reason for the blog format is simply that this is a fairly substantial area and to treat it properly I need to look at it from a range of angles. I do not necessarily have the time or inclination to write a whole monograph, and so will release stuff piecemeal as and when it gets written. If it ever reaches a nearly-complete form, I may repackage the whole thing; then again I may not.Comments
The whole point of taking this online is to engage, so please feel free to comment. However, there are plenty of forums where people can discuss narcolepsy, share their experiences and talk about how to handle it, and I don’t want this blog to replicate those. So please keep on topic, and follow my basic online policy:- Don’t be an asshole.
- Stick to point 1, and we’ll be fine.
