Re: 19 April Re: 18 April Re: Work and Angst

[Guest guest]

Hi Ray,

> What you say about others getting to know you better and then believing

> your illness is getting worse has happened to me, too. When people are

This is the circular logic that people apply ( I should say " lack of

logic " ).

I can't comprehend it, but as someone trained in logic ( even though my

brain is sometimes, and sometimes many times, if you know what I mean, just

mush ), but I can relate to it, in the sense that it is the Pythonesque

" Cloth-eared Syllogism " , because it pre-supposes a steady state stasis in

their perception ( and in me).

I hope this makes sense, because it is a primary pain that I have been

battling with.

> around you constantly you can't " hide " your disease and its symptoms

> from them. That's why I don't have very many really close friends that

VERY TRUE !!

As an example ... I have a hip role, that I can control if I concentrate on

my walking. I think this is supposed to be related to the scoliosis of the

spine, so when I get tired my limp gets visible, and I have some side

affects that exacerbate my nausea.

With most people I can hide the side-effects, but when someone is around me

enough, well it is very visible. So the more they are around me, the more

they see; and so, the conclusion is that I must be getting worse, when all

they are seeing is just more of who I am.

It is not simply painful, it is bloody hurtful on an emotional level and

totally illogical on a rational level. If I am their friend, why can't they

at least ask about me? I know I am whining, but I just get the same story

over and over when they seem to think that their clearer perception of my

problems means ipso facto that I am getting worse.

I am the one with frontal Lobe brain damage, and they act like they have had

pre-fontal lobotomies.

> I spend very much time with. I do not want their pity, I crave their

> friendship, but not the way they seem to want to give it. Just treat me

> like one of the guys! I'll tell you what I can and can't do. It is all

> very frustrating.

FRIENDSHIP !! The key thing !!

Geeze that is what I REALLY need I can tell you.

There is a story told by Dr Jeffers in one of her tapes about a guy in

New York who lost the use of his legs, and after much work and progress,

during a session with some kids, he asked the kids what a disabled person

wanted the most, and one kid piped up and said " FRIENDS!! " and hugged him,

and then all the kids hugged the guy. Dr Jeffers observed this event and

relates it in her tape FEEL THE FEAR AND DO IT ANYWAY.

regards

. ( I am going to rest now and watch Dice Clay on a video :-)

*********************************************************************

The real act of discovery is not in finding new lands, but in seeing

with new eyes.

- Marcel Proust

[Guest guest]

,

Good post. Says exactly what I also feel about this stuff. I have an

extreme tremor and when folks just see me for a few minutes and I'm not

using my hands they never know. But when I'm around them for very long

and doing something like barbecuing, holding a book or notebook to read

from, pouring a cup of coffee, etc., it gets so strong they just sit

there and stare at my hands. When I tell them that I've had it for

three years now or more, they can't believe it. The other thing that

gets to me is folks that think what I have is somehow contagious. LOL.

Ray

[Guest guest]

Hi Ray,

> there and stare at my hands. When I tell them that I've had it for

> three years now or more, they can't believe it. The other thing that

> gets to me is folks that think what I have is somehow contagious. LOL.

The I can't believe it factor with people are supposed to be friends is

stressful. At least I find that so. I am pretty good at covering up. Example

to mind at the moment is that if I play bass guitar, my fretting hand will

cramp and go stiff as a board ( painful as hell, but tolerable, not as hard

to deal with as a stomache muscle cramp in odd places that kills like the

blazes ), and I can play bass in horrible pain because visually I am using

my hand the way I usually do, and for most pedestrian bass work I can cover

a fretting hand problem... it's when my right pick/-slap and pop hand

freezes that I have a bit more difficulty ... but this works well if my

fretting hand has been okay because I can play bass guitar with my fretting

hand using a hammer off technique adapted from a six string guitar playing

technique called " tapping " .

My main point here is not to brag about my guitar pplaying, but that I adapt

techniques to manage the situation. If people see me intermittently, they

will not know what is happening. But if they see me in a variety of

situations, not just with guitars, but with most situations, they *should*

get a better picture. However, god knows how their brain works, and all they

see is me deteriorating.

I have not had any indication that they thought what I have is contagious,

but if I miss a few things that they WANT me to go to because I totally

stuffed, then I never get invited. And I am so very hard tried to emphasize

things I can do with friends and acquaintnces, and to stress the positive

things I can do ( like I can do a lot of computer related things that could

help them in their ventures), but nothing happens.

I have done the old thing of accentuate the positive, and still NADA.

Anyway, I am on the way to being more positive overall, but it is hard. I am

the one with Brain damage , and they act like they are the ones who operate

with just a brain stem :-)

Mmmm, I think the acupuncture I had tonight has let too much wind out of me

:-)

regards

.

*********************************************************************

I don't know the key to success, but the key to failure is trying to

please everybody.

- Bill Cosby

[Guest guest]

,

for some of my friends (?) they act like I died when they find out that

I have a chronic, non-curable, auto-immune reactive disease. I wonder

if it makes them question there own vulnerability?

Ray

[Guest guest]

I really think that as far as my friends are concerned, their reaction is

based more on a feeling of being helpless. Sort of like the way one feels

when faced with someone who is crying and knowing there is nothing you can

do. It can be a very uncomfortable feeling.

Mike

mailto:byteme@...

homepage: http://members.home.net/mcourteau

ICQ# is 19431463

" Free Tibet ! 50 years of Chinese occupation is long enough ! "

--------------------------------------------

Re: 19 April Re: 18 April Re: Work and Angst

>

>

> ,

> for some of my friends (?) they act like I died when they find out that

> I have a chronic, non-curable, auto-immune reactive disease. I wonder

> if it makes them question there own vulnerability?

> Ray

>

>

>

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[Guest guest]

I had the same problem when I was first diagnosed with diabetes. Many of our

friends would stay away as they did not want to catch the diabetes. My

daughter was not allowed to visit three of her friends homes as they was

afraid that she would bring diabetes into their home. That was a very

traumatic year for our daughter and we was finally forced to move to get

away from the rotten situation.

Bill Newman -- Rochester, NY

wtnewman@...

Bill@...

www.christianmerchants.com

[Guest guest]

Bill,

That astounds me. I never heard of such ignorance. Those people must have

lived in the stone age.

Mad.

In a message dated 4/22/99 8:38:21 AM Eastern Daylight Time,

wtnewman@... writes:

>

>

> I had the same problem when I was first diagnosed with diabetes. Many of

our

> friends would stay away as they did not want to catch the diabetes. My

> daughter was not allowed to visit three of her friends homes as they was

> afraid that she would bring diabetes into their home. That was a very

> traumatic year for our daughter and we was finally forced to move to get

> away from the rotten situation.

>

>