Re: Incredibly sad.

[Guest guest]

>

I feel incredibly sad for US when I read these emails, because clearly this 4S

is no picnic for

anyone and I am praying that my children are spared. I couldn't bear to think

of them

going through the agony that people on this list describe, the agony that I have

dealt with

in various stages of my life. I'd love another child, even at my advanced age

of 39 (!), but I

have to admit that it scares me, now that I am aware of the strong genetic

component to

4S.

That being said, I do not think others are necessarily cruel and self-involved

with respect

to our 4S symptoms (in other ways, yes, but not in this way). I just don't

think other

people have even the remotest clue about how these noises affect us. To the

rest of the

world, we are . . . well, crazy and neurotic. That's just the truth. I mean,

what is crazy

anyway? The noises that bother us don't bother 99% of the population, so that

does kind

of make us " neurotic " by comparison, even if the reasons we react this way are

neurologically based and not " our fault. "

I am thrilled at the idea of NIH research and the possibility of treatment for

this awful

condition. But in the meantime, I know that it helps me a great deal to own

this problem

as my own, to remind myself constantly that I am the " crazy " one, and that it

really isn't

about the other people who are making the sounds. Maybe some people object to

the

" crazy " part, but it honestly helps me with my rage and my need to respond to

the noises.

I even asked my husband to remind me when I am " picking " on my son's noises,

when I go

beyond the " normal " response to gross 12 year old boy sounds and into

over-reaction -

because I honestly don't know what is normal and what isn't.

I hope this doesn't sound overly blunt, but I have reached a stage where I feel

I can cope

pretty well with the 4S, even accept it as part of who I am, and this attitude

really has

helped me keep it in perspective.

I'm learning so much here . . . thanks all.

Kate in NY

> Hi All.  I keep reading everyone's emails and am just overcome with sadness. 

People

suffering, their lives destroyed.  How can people be so cruel and so

self-involved as to not

see the pain of others around them?!  It's as though the human race is just

slipping into a

black hole.  People wonder why there are problems with race and religion.  We

can't even

accept each other, much less tolerate people that are " different " from us.  It's

such a sad,

sad state of affairs.  I think I'll go and have a good cry.

>

> Kathy G.

>

[Guest guest]

I agree that this is a sad condition and it makes people's lives a

living hell including those around the one with 4S. I do agree that

people are very self-absorbed in certain areas of life with complete

lack of concern for anyone around them and that makes me sad. But I

don't think people are self-absorbed when it comes to 4S either.

Like you said, these things that drive us mad are " normal " to most

people and most people don't even think anything of them. Now if

someone KNOWS a person has 4S and deliberately keeps making those

noises to egg them on, then yes, that person is very self absorbed

and a complete idiot in my opinion! I'm glad that you've learned to

cope with this to some point and I think attitude does go a long

way. I try to keep a positive attitude but some days it's

impossible! I'm sure you all know about those days! I do remind

myself when I hear someone chewing gum that it's not that persons

fault that I'm so ticked off about it (unless it's deliberate). It's

nobody's fault... it's my brain's fault! This is how I was created

just like others are created blind or without an arm, or with

cancer. In the scope of things, our lives 'could' be so much worse.

4S is not fun by any means but I remind myself that I am fortunate in

so many other ways. I have a job, a house, food on my table and a

family. It's these thoughts that get me through day to day. I too

am learning so much here thanks to everyone sharing their lives with

each other and thanks to Dr. for giving us a place to do so!

Darlene

> >

> I feel incredibly sad for US when I read these emails, because

clearly this 4S is no picnic for

> anyone and I am praying that my children are spared. I couldn't

bear to think of them

> going through the agony that people on this list describe, the

agony that I have dealt with

> in various stages of my life. I'd love another child, even at my

advanced age of 39 (!), but I

> have to admit that it scares me, now that I am aware of the strong

genetic component to

> 4S.

>

> That being said, I do not think others are necessarily cruel and

self-involved with respect

> to our 4S symptoms (in other ways, yes, but not in this way). I

just don't think other

> people have even the remotest clue about how these noises affect

us. To the rest of the

> world, we are . . . well, crazy and neurotic. That's just the

truth. I mean, what is crazy

> anyway? The noises that bother us don't bother 99% of the

population, so that does kind

> of make us " neurotic " by comparison, even if the reasons we react

this way are

> neurologically based and not " our fault. "

>

> I am thrilled at the idea of NIH research and the possibility of

treatment for this awful

> condition. But in the meantime, I know that it helps me a great

deal to own this problem

> as my own, to remind myself constantly that I am the " crazy " one,

and that it really isn't

> about the other people who are making the sounds. Maybe some

people object to the

> " crazy " part, but it honestly helps me with my rage and my need to

respond to the noises.

> I even asked my husband to remind me when I am " picking " on my

son's noises, when I go

> beyond the " normal " response to gross 12 year old boy sounds and

into over-reaction -

> because I honestly don't know what is normal and what isn't.

>

> I hope this doesn't sound overly blunt, but I have reached a stage

where I feel I can cope

> pretty well with the 4S, even accept it as part of who I am, and

this attitude really has

> helped me keep it in perspective.

>

> I'm learning so much here . . . thanks all.

>

> Kate in NY

>

>

>

>

> > Hi All.  I keep reading everyone's emails and am just overcome

with sadness.  People

> suffering, their lives destroyed.  How can people be so cruel and

so self-involved as to not

> see the pain of others around them?!  It's as though the human race

is just slipping into a

> black hole.  People wonder why there are problems with race and

religion.  We can't even

> accept each other, much less tolerate people that are " different "

from us.  It's such a sad,

> sad state of affairs.  I think I'll go and have a good cry.

> >

> > Kathy G.

> >

>