Hero, it looks to me like you've just written a diary entry... cheers indeed.

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o o

( > )

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- Bill -

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Subj: Re: In-exsufflator article & Headmouse

Date: 03/10/2000 4:58:18 PM Eastern Standard Time

From: hojoy@herojoynightingale.me.uk (hojoy)

Reply-to: hojoy@herojoynightingale.me.uk

To: MaxNWM@aol.com

Cheers Bill, brain waves, I like to think so too. I've been warned by experts not to get too excited yet though but I have to have some sort of dreams to hang on to. I'm so scared of my own vulnerability. I can't gesticulate or yell even in pain (if it lasts long enough I just go into a state of physiological shock) and folk find this really hard to understand since I'm full of movement and not a bit paralysed. Of course the other thing folk find difficult to understand is how I make voluntary movements when enabled but the consultants at Guy's Hospital just say they haven't an explanation, I just do. My OT describes it as a subordinated abbreviated voluntary system somehow steamrollered all the time by the involuntary stronger movements which come in all shapes and sizes. My muscle tone changes continually. Sometimes I'm lunging violently, sometimes I'm falling asleep all the time. Some days I oscillate between the 2 and feel totally out of control. This week I've had what I call hysty episodes when I start with a sort of nervous reaction to an unexpected sound and let out a high pitched nearly-giggle which I just then can't stop and it goes on like hysterical sobbing till I'm quite beside myself with embarrassment and fatigue. That's the worst because I can't hear people speak and appear like a mindless idiot and it's almost impossible to break the pattern. The secret is to break the pattern as soon as I start (same with my epilepsy) but that of course requires hands-on intervention (a huge

enveloping hug on a comfortable sofa works wonders). Or I can sometimes be "talked down" - my enabler whispers at me to catch a silence and praises me if there's any break at all, then sets targets when I have to stay calm for a count of 2 and then a count of 5, eventually a count of 20 when I can usually break out if distracted into some other activity providing no sound is involved. It's the ordinary things that set it off - this week when I was talking to a radio producer she sat and rubbed 2 cassette boxes together in a something-to-do-with-hands sort of way and I was off into this horrible hysty for 10 mins. Someone opening an envelope, the cutlery drawer, the top of a pepsi bottle, someone sneezing. Most of the time I just let out one small giggle but sometimes and unpredictably I get caught in an "episode". Thankfully I don't have many of them but there's a fear to fight too of acceptability. When I was in New York last year I was having such a horrible spate of hysties I was afraid of going out and ate in every night when I was

tired instead of risking being stuck in a restaurant unable to shut up my horribly voluble noises. You have no idea what it is like to be a composer who hears beautiful music in my head, music that has been performed publicly by professional musicians and yet on the odd occasion when I make a real actual noise it is terrifyingly unhuman... enough feeling sorry for myself, life's a rollercoaster. It's not all bad. And I admire you too, very. The article's fine.

cheeribye for now

Hero.