RE: It's nice to know that I'm not alone...

August 19, 1999

Caren,

I understand what you're saying, but it's the fact that I and that many

other people get angry easier now (post NF2 as opposed to pre-NF2) that I

find interesting.

If it's an individual thing, then hey, that's fine and I understand, we're

all different. But if many people with NF2 get angry easy now, like I do,

then I have to wonder if the anger is coming mainly from me or is is Nf2

related?

Well, just something I have to think about and look up now anyways.

Peace...

Mark

----Original Message Follows----

From: NYPeAcHGrL@...

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: It's nice to know that I'm not alone...

Date: Thu, 19 Aug 1999 15:02:15 EDT

From: NYPeAcHGrL@...

Am I the only one that was and will never be angry about my NF2???

I mean, I was diagnosed at around 13 or 14 and the word was like someone

speaking chinease to me.....but I and mom just said, okay now what?? sure I

cried, and i think that was one of the only times I have cried about

it...everything we faced was with courage and LOTS of laughter....never

anger.....even now, I wish sometimes i could hear, or i could run around,

and

things like that but I am not angry...

oh well .....just had to share

Caren

August 19, 1999

----Original Message Follows----

remember fox mulders password tho- trustno1<------and the 'Truth is out

there!!! " heheh thanks speedy

Mark

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August 19, 1999

Am I the only one that was and will never be angry about my NF2???

I mean, I was diagnosed at around 13 or 14 and the word was like someone

speaking chinease to me.....but I and mom just said, okay now what?? sure I

cried, and i think that was one of the only times I have cried about

it...everything we faced was with courage and LOTS of laughter....never

anger.....even now, I wish sometimes i could hear, or i could run around, and

things like that but I am not angry...

oh well .....just had to share

Caren

August 19, 1999

In a message dated 8/19/99 11:55:56 AM Pacific Daylight Time,

mark_sarmac@... writes:

<< But seriuosly, before I even knew or heard that I had NF2 I wasn't as

angry

as I am now. It seems that every little thing sets me off at times. >>

I can certainly relate to that---BTW does yelling and screaming make the

tumor(s) worse???--Hope not

TR

August 19, 1999

Mark

" i have to...............look up now anyway "

good save buddy:)

Jimmy

August 19, 1999

> I dunno, I guess I just need to calm down. Before I saw everyone as the

> enemy. I used to see things black and white: either a person is your

friend

> or your worse enemy, but now I'm starting to see that everything is a

shade

> of gray.

>

> Well, I don't know what the hell I'm talking so, I'll just say, I have the

> same experience with anger.

remember fox mulders password tho- trustno1- speedy

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August 19, 1999

Ah Mark and Crew, If only it was just the fact that we have NF2,

therefore we find our emotion " anger " always must below the surface. I

want to throw in one more factor, NF2 related but not totally. That is

the fact that we no longer can communicate with our fellowman as easily

as we did before we bacame deaf. From past experiences both on the Crew

and in the hearing world, I have found that those who sign accept their

deafness better. (I'm still not a signer!) Those who become deaf before

finishing school and who thru *necessity* had to learn sign to continue

with their education have become signers who both read and can sign what

they say. Those of us who did not need to learn to sign in order to

finish our educations--read older when we became deafened, tend to find

learning sign too time consuming and difficult for the *bennies* gained.

We're more angry, too. I don't like my NF2, but I HATE my deafness.

After almost 19 yrs, I no longer see red most of the time--I've learned

a little better how to channel my frustrations--I'm constantly

advocating about something these days.

My pennies and hope that all this anger gets channeled into things that

can help all of us cope better in the hearing world of which we will

always be a part.

Hugs, ie

> I understand what you're saying, but it's the fact that I and that many

> other people get angry easier now (post NF2 as opposed to pre-NF2) that I

> find interesting.

> Mark

> Am I the only one that was and will never be angry about my NF2???

.....never

> anger.....even now, I wish sometimes i could hear, or i could run around,

> and

> things like that but I am not angry...

> Caren

August 20, 1999

Do I get angry? Sure do. Is it NF related? I'd love to believe that was the

root of my anger but the fact is, I'm a human being (or so I've been told)

and ALL humans get angry at times.Unless I see some actual proof from

research that NF causes me to be angry I will put the blame where it

belongs.Squarely on me. I'm not saying that NF is a joy to live with, but I

think we all (I know I do) tend to blame the unpleasant characteristics of

ourselves on NF.

Don

Re: It's nice to know that I'm not alone...

Date: Thu, 19 Aug 1999 15:02:15 EDT

From: NYPeAcHGrL@...

Am I the only one that was and will never be angry about my NF2???

I mean, I was diagnosed at around 13 or 14 and the word was like someone

speaking chinease to me.....but I and mom just said, okay now what?? sure

I

cried, and i think that was one of the only times I have cried about

it...everything we faced was with courage and LOTS of laughter....never

anger.....even now, I wish sometimes i could hear, or i could run around,

and

things like that but I am not angry...

oh well .....just had to share

Caren

August 20, 1999

Mark,

I know exactly what you mean. But instead of telling that rude doctor who

refuses to write to me that he is a Neanderthal, I fuss about him to my

husband! Or that sales clerk that gets three different women to try to talk

to me when I tell her " I am Deaf, would you please write to me? " that she is

the one that is DUMB! I complain to my husband! I need to start taking up

for myself, huh?

Donna

August 20, 1999

Caren,

I AM SO ENVIOUS OF YOU!! Of couse, it makes it harder when your only son has

NF2 also! Do you have any kids?

Donna

August 20, 1999

In a message dated 8/20/99 9:49:31 PM Eastern Daylight Time, DonnaHut@...

writes:

<< Do you have any kids? >>

NO! I do not want children for various reasons, my mom is on the crew if you

want to talk with her sometime, i can only imagine how hard it is for you to

see your son go through so much....(mom is clarab3123@...)

caren

August 21, 1999

Hey Tony,

I'm not sure if yelling or screaming makes the tumors worse or regrow, but

yelling and screaming do give me a heinous head ache.

Mark

----Original Message Follows----

BTW does yelling and screaming make the

tumor(s) worse???--Hope not

TR

August 21, 1999

Hey Don,

Well, we cam blame stupidity and ignorance about late deafness on some

people though. I mean I had a Deaf person ask me one time, " do you miss

hearing?? " When I kind of blew up and asked him if he lost a leg, would he

miss it? I think he got the message that it was the most stupidiest

question I've ever " heard " . =) I also get a little peeved when I voice, to

the school cashier and when I ask " excuse me?? " she would rudely look at me

and voice very slowly, " iiissss thhisss all youuuuuu waaaaant?! " . Making me

feel like a total idiot. Or when a group of hearing people would " forget "

that I'm deaf and would start speaking to each other and leave me out of the

conversation eventhough one of them Signs.

Or my all time favorite is when I go to a doctors check up and the doctor

talks more with my father than with me. I got so angry one time that I

snapped, " My dad isn't the one with the problem, I am!! " I agree it was

rather rude and obnixous (which would be out of character for me believe it

or not) but after that, he requested an interpreter for our meetings.

You guys are right. I can't totally blame everything on NF2...

Thanks....

Mark

----Original Message Follows----

I'm not saying that NF is a joy to live with, but I

think we all (I know I do) tend to blame the unpleasant characteristics of

ourselves on NF.

Don

August 21, 1999

Hey Donna,

I wish I had a husband, but does a therapist count? Oh and as a side note to

anyone, as a friend once said, " insanity is only a state of mind. " =)

Mark

Okay, I'd settle for a girlfriend that would be nice wouldn't it? =o)

Mark

----Original Message Follows----

I fuss about him to my

husband!

August 21, 1999

The situtation below also happened to me, what did I do? I didnt get mad, I

went into the doctors office alone, just me and a pad and pencil......this

was recently i did thart too cuz i got sick of having to have paul interpret

at my neuro i always have an interpreter there

family is there for support not to interpret for you and you n eed to make

that known to your doctor.........its not worth getting angry over

and yes many doctors do not have experience dealing with deaf, but you cant

expect them to learn over night, thus yuo must become the teacher, show them

what you want, what you can do, what you need, and what you need them to

do...

caren

In a message dated 8/21/99 11:39:42 PM Eastern Daylight Time,

dongrim@... writes:

<< can identify with everything you are saying Mark. You could easily

substitute my name into the scenarios you described. I 'll add another one

to your list. I finally convince a doc or whoever to speak directly to me

instead of my mother (who usually goes along to my doctor's appointments )

and they do so until I misunderstand something and ask them to repeat what

they said. Then it's back to being treated like I'm an idiot again! For

some reason being deaf = stupidity to a lot of people. I guess it's because

they don't have experience in dealing with us. That's a pretty lame excuse

though. >>

August 22, 1999

I can identify with everything you are saying Mark. You could easily

substitute my name into the scenarios you described. I 'll add another one

to your list. I finally convince a doc or whoever to speak directly to me

instead of my mother (who usually goes along to my doctor's appointments )

and they do so until I misunderstand something and ask them to repeat what

they said. Then it's back to being treated like I'm an idiot again! For

some reason being deaf = stupidity to a lot of people. I guess it's because

they don't have experience in dealing with us. That's a pretty lame excuse

though.