Narcolepsy Forum Posting

Posted by chucker on July 02, 2001 at 19:47:11:

In Reply to: Recently diagnosised posted by olegirl on June 30, 2001 at 06:41:36:

dear olegirl..

... outside of the fact that the word "nap" is right in the middle of menapause, there's no way for me to fully understand how going through it and having narcolepsy could be bearable. even it's name is inapropriate... men? pause? (aren't pause's supposed to be brief interruptions after which whatever was going on before continues as it was?)

I do know that it can be psychologically and physiologically debilitating and the whole concept of that on top of n is staggering. i only have to deal with n and related sp and cat and meds fix those two.one of the reasons i admire many of my friends here as they suffer, as you do, from more than just n. to deal with it alone is burdensom, painful and at times infuriating. to have deal with how others conceptualize us, especailly those close to us, is at times for some of us,humiliating and demeaning, but to experiance both is..... sure glad i'm a boy!

if i may: shame on america. shame shame on her for having the resorces to put a man on the moon while most narcoleptics are wondering around dazed, socially ostrasized, physically impaired, and in many cases, without hope. shame on her for foolishly, for political gain, deciding to close down asylums for the mentally impaired in the 80s telling us they weren't needed, that local communities, churches and families would take care of them. shame on her for turning her back on them again after the homeless population, including many narcoleptics, had soared. shame on her for declaring hillary clinton a fool for fighting for nationalized medical care. shame on the medical professionals who could and would know much more than they do about us by simply taking the time to find us here and listen to us and for not reading the in depth study that concluded that the physiosocial effects on even treated narcoleptics are "more severe than the well documented delerious effects of epilepsy. shame on us for thinking that's ok because, by comparison, others in other countries don't recieve the care we do.

and mostly, shame on those of us who have won the battle, whose suffering has made us stronger, who don't take time to reach out to those beginning their lifelong physical and mental confrontation with the warlord of sleep.

were there nothing to be ashamed of, you probably wouldn't feel as you do now.

"when they ask us what we did, what will we say?"

olegirl, when your yoke becomes too heavy, when you feel inside that no one cares or understands, when you epitomize all that is wrong with our society, visit these post please. there are hundreds more like them, these are just the ones that come to mind now and each is written by a narcoleptic with multiple afflictions. they reflect empathy and sympathy, failure and success, dreams fullfilled and unfullfilled, humor, reality, love and most of all hope:

sammy:june 3rd 12:16 kara:may 31st 15:43 canine: june 23rd 21:27 and the last paragraph of..tired or wired:may 31st 09:49

i borrow from the last of these in asking you to
persevere, to hold fast to the hope of what tomorow might bring.

chucker

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