Re: Volunteering (Re: hook for PR)

[Guest guest]

In a message dated 8/4/00 7:08:54 PM Pacific Daylight Time,

.L.Przybysz.3@... writes:

<< I don't know--I'm a weirdo or something... I feel like I've gained more

from living with

NF2 than what I've lost. I mean, dang! I think about all I've learned from

the

different states of being that I've found myself in as a result of

surgeries, hearing

loss, etc, and it's like, " hey, I'm really living! " I agree it's not the

path of least

resistance and it has been quite difficult to watch friends I've made

(thanks to NF2)

face their struggles and others move on to other realms... if you want to

see the view

at the top of the mountain, then you gotta be willing to do some climbing.

I've gained

some pretty cool perspectives as a result of NF2 (not in spite of it)! >>

*HIGH FIVES*

Well said, and VERY much agreed you just 8had the ability to put into words

what I have been thinking for a LONG time!

Hugs

Caren

[Guest guest]

Message: 21 Date: Fri, 04 Aug 2000 18:06:17 GMT

Subject: Re: Volunteering

> A while ago, someone in the Crew had given the idea of a " hook for PR "

well,why not NF2ers getting thier college degrees or working in a hearing

setting

despite their " limitations " .

Aaaaah! And throw-away 35 years of effort by the Disability Rights Movement to

change

people's perceptions about what it means to live with a disability while you're

at it!

Maybe I'm a major anomaly, but I feel like I've just done what I could with what

I've

had to work with and a bit of synchronicity.

FYI, way, way back Jerry Springer (when he was just out of politics and

relatively

unknown and before he had any muscular assistants on-hand) did a segment on NF2.

This

was like in '91 or '92 just after I had been diagnosed and my Mom caught it and

taped

part of it (this was when Springer was on ONLY at 3 a.m.) If I thought there

was any

possibility of finding it, I'd dig it out for Jimmy... I think it was more

informational

and, should I say...

" respectable " (again, but before ratings were an issue and before Jerry! Jerry!

was a

well-recognized phrase).

I don't know--I'm a weirdo or something... I feel like I've gained more from

living with

NF2 than what I've lost. I mean, dang! I think about all I've learned from the

different states of being that I've found myself in as a result of surgeries,

hearing

loss, etc, and it's like, " hey, I'm really living! " I agree it's not the path

of least

resistance and it has been quite difficult to watch friends I've made (thanks to

NF2)

face their struggles and others move on to other realms... if you want to see

the view

at the top of the mountain, then you gotta be willing to do some climbing. I've

gained

some pretty cool perspectives as a result of NF2 (not in spite of it)!

I'm not trying to minimize anyone's experience and I realize not everyone's at

the same

stage in thought/processing of their experience--just speaking up on where I'm

at.

Anyhow, was the t.v. thing to raise the general public's awareness about NF2 or

was it

to solicit more funds for research? (of course I have even more opinions on

both

topics, but those can wait for another time so that I don't (in the words of Mr.

ED)

" write a book " or " beat the horse after it's dead " )

Hugs,

btw, I have a friend with NF2 and he said he tried the list for a little bit and

all

that was talked about was sex in the MRI tube and he quite 'cause he was

disappointed.

I never remember that as a topic (and I am not proposing it as one now), but can

anyone

help me out here? Did he maybe join the social list by mistake??? It's weird

because I

don't even remember him being introduced to us like the new members are (or

seeing his

bio come through), so I didn't even know he tried until just recently. " Ah

well. "

[Guest guest]

Message: 21 Date: Fri, 04 Aug 2000 18:06:17 GMT

Subject: Re: Volunteering

> A while ago, someone in the Crew had given the idea of a " hook for PR "

well,why not NF2ers getting thier college degrees or working in a hearing

setting

despite their " limitations " .

Aaaaah! And throw-away 35 years of effort by the Disability Rights Movement to

change

people's perceptions about what it means to live with a disability while you're

at it!

Maybe I'm a major anomaly, but I feel like I've just done what I could with what

I've

had to work with and a bit of synchronicity.

FYI, way, way back Jerry Springer (when he was just out of politics and

relatively

unknown and before he had any muscular assistants on-hand) did a segment on NF2.

This

was like in '91 or '92 just after I had been diagnosed and my Mom caught it and

taped

part of it (this was when Springer was on ONLY at 3 a.m.) If I thought there

was any

possibility of finding it, I'd dig it out for Jimmy... I think it was more

informational

and, should I say...

" respectable " (again, but before ratings were an issue and before Jerry! Jerry!

was a

well-recognized phrase).

I don't know--I'm a weirdo or something... I feel like I've gained more from

living with

NF2 than what I've lost. I mean, dang! I think about all I've learned from the

different states of being that I've found myself in as a result of surgeries,

hearing

loss, etc, and it's like, " hey, I'm really living! " I agree it's not the path

of least

resistance and it has been quite difficult to watch friends I've made (thanks to

NF2)

face their struggles and others move on to other realms... if you want to see

the view

at the top of the mountain, then you gotta be willing to do some climbing. I've

gained

some pretty cool perspectives as a result of NF2 (not in spite of it)!

I'm not trying to minimize anyone's experience and I realize not everyone's at

the same

stage in thought/processing of their experience--just speaking up on where I'm

at.

Anyhow, was the t.v. thing to raise the general public's awareness about NF2 or

was it

to solicit more funds for research? (of course I have even more opinions on

both

topics, but those can wait for another time so that I don't (in the words of Mr.

ED)

" write a book " or " beat the horse after it's dead " )

Hugs,

btw, I have a friend with NF2 and he said he tried the list for a little bit and

all

that was talked about was sex in the MRI tube and he quite 'cause he was

disappointed.

I never remember that as a topic (and I am not proposing it as one now), but can

anyone

help me out here? Did he maybe join the social list by mistake??? It's weird

because I

don't even remember him being introduced to us like the new members are (or

seeing his

bio come through), so I didn't even know he tried until just recently. " Ah

well. "

[Guest guest]

Hi

About your friend that joined and left the crew or social.

Surprisingly we don't talk about stuff like SEX in the MRI tube on the

social. In fact where pretty well behaved. I don't recall this subject

although darn interesting !! ) I would guess it was on the crew, things got

a little wild for a bit there.

Tell he or her to come back give it a second try.......

Marcus from down here

Re:

Volunteering

>

> > A while ago, someone in the Crew had given the idea of a " hook for PR "

well,why not NF2ers getting thier college degrees or working in a hearing

setting

> despite their " limitations " .

>

> Aaaaah! And throw-away 35 years of effort by the Disability Rights

Movement to change

> people's perceptions about what it means to live with a disability while

you're at it!

> Maybe I'm a major anomaly, but I feel like I've just done what I could

with what I've

> had to work with and a bit of synchronicity.

>

> FYI, way, way back Jerry Springer (when he was just out of politics and

relatively

> unknown and before he had any muscular assistants on-hand) did a segment

on NF2. This

> was like in '91 or '92 just after I had been diagnosed and my Mom caught

it and taped

> part of it (this was when Springer was on ONLY at 3 a.m.) If I thought

there was any

> possibility of finding it, I'd dig it out for Jimmy... I think it was more

informational

> and, should I say...

> " respectable " (again, but before ratings were an issue and before Jerry!

Jerry! was a

> well-recognized phrase).

>

> I don't know--I'm a weirdo or something... I feel like I've gained more

from living with

> NF2 than what I've lost. I mean, dang! I think about all I've learned

from the

> different states of being that I've found myself in as a result of

surgeries, hearing

> loss, etc, and it's like, " hey, I'm really living! " I agree it's not the

path of least

> resistance and it has been quite difficult to watch friends I've made

(thanks to NF2)

> face their struggles and others move on to other realms... if you want to

see the view

> at the top of the mountain, then you gotta be willing to do some climbing.

I've gained

> some pretty cool perspectives as a result of NF2 (not in spite of it)!

>

> I'm not trying to minimize anyone's experience and I realize not

everyone's at the same

> stage in thought/processing of their experience--just speaking up on where

I'm at.

>

> Anyhow, was the t.v. thing to raise the general public's awareness about

NF2 or was it

> to solicit more funds for research? (of course I have even more opinions

on both

> topics, but those can wait for another time so that I don't (in the words

of Mr. ED)

> " write a book " or " beat the horse after it's dead " )

>

> Hugs,

>

>

> btw, I have a friend with NF2 and he said he tried the list for a little

bit and all

> that was talked about was sex in the MRI tube and he quite 'cause he was

disappointed.

> I never remember that as a topic (and I am not proposing it as one now),

but can anyone

> help me out here? Did he maybe join the social list by mistake??? It's

weird because I

> don't even remember him being introduced to us like the new members are

(or seeing his

> bio come through), so I didn't even know he tried until just recently.

" Ah well. "

>

>

>

[Guest guest]

Ahh yes I remember this..I think it was from Chicago Hope...

Pete

<resisting witty comment>

[Guest guest]

,

You've done it again! You are a master of words. I can see this played out

on the big screen. Thanks. Vicki

[Guest guest]

I read everything, and I am sure " sex in the MRI tube " was not o n this

list! You would have to check with someone on the social list whether it

was a topic of discussion. I would be interested in the reply. Marie

Re: Volunteering

>

>> A while ago, someone in the Crew had given the idea of a " hook for PR "

well,why not NF2ers getting thier college degrees or working in a hearing

setting

>despite their " limitations " .

>

>Aaaaah! And throw-away 35 years of effort by the Disability Rights

Movement to change

>people's perceptions about what it means to live with a disability while

you're at it!

>Maybe I'm a major anomaly, but I feel like I've just done what I could with

what I've

>had to work with and a bit of synchronicity.

>

>FYI, way, way back Jerry Springer (when he was just out of politics and

relatively

>unknown and before he had any muscular assistants on-hand) did a segment on

NF2. This

>was like in '91 or '92 just after I had been diagnosed and my Mom caught it

and taped

>part of it (this was when Springer was on ONLY at 3 a.m.) If I thought

there was any

>possibility of finding it, I'd dig it out for Jimmy... I think it was more

informational

>and, should I say...

> " respectable " (again, but before ratings were an issue and before Jerry!

Jerry! was a

>well-recognized phrase).

>

>I don't know--I'm a weirdo or something... I feel like I've gained more

from living with

>NF2 than what I've lost. I mean, dang! I think about all I've learned

from the

>different states of being that I've found myself in as a result of

surgeries, hearing

>loss, etc, and it's like, " hey, I'm really living! " I agree it's not the

path of least

>resistance and it has been quite difficult to watch friends I've made

(thanks to NF2)

>face their struggles and others move on to other realms... if you want to

see the view

>at the top of the mountain, then you gotta be willing to do some climbing.

I've gained

>some pretty cool perspectives as a result of NF2 (not in spite of it)!

>

>I'm not trying to minimize anyone's experience and I realize not everyone's

at the same

>stage in thought/processing of their experience--just speaking up on where

I'm at.

>

>Anyhow, was the t.v. thing to raise the general public's awareness about

NF2 or was it

>to solicit more funds for research? (of course I have even more opinions

on both

>topics, but those can wait for another time so that I don't (in the words

of Mr. ED)

> " write a book " or " beat the horse after it's dead " )

>

>Hugs,

>

>

>btw, I have a friend with NF2 and he said he tried the list for a little

bit and all

>that was talked about was sex in the MRI tube and he quite 'cause he was

disappointed.

>I never remember that as a topic (and I am not proposing it as one now),

but can anyone

>help me out here? Did he maybe join the social list by mistake??? It's

weird because I

>don't even remember him being introduced to us like the new members are (or

seeing his

>bio come through), so I didn't even know he tried until just recently. " Ah

well. "

>

>

>

>

[Guest guest]

Actually..... (and sometimes my elephant memory is NOT a good thing to have)...

I *do* remember the sex-in-the-tube topic. I can't remember who started it but

I think it had something to do with a tv show. Might have been when we were

talking about Robin appearing on that " Doctor's " show as a NF1 patient,

I don't know, a year or so ago. I know it had to do with someone seeing that on

a hospital show. (Ppl were commenting on how dumb that show was.)

lol, what a tacky first thread for a new Crew member to see. , tell them

we ain't so bad and to try us again!

Carla

Marie Drew wrote:

> I read everything, and I am sure " sex in the MRI tube " was not o n this

> list! You would have to check with someone on the social list whether it

> was a topic of discussion. I would be interested in the reply. Marie

>

> >Hugs,

> >

> >

> >btw, I have a friend with NF2 and he said he tried the list for a little

> bit and all

> >that was talked about was sex in the MRI tube and he quite 'cause he was

> disappointed.

> >I never remember that as a topic (and I am not proposing it as one now),

> but can anyone

> >help me out here? Did he maybe join the social list by mistake??? It's

> weird because I

> >don't even remember him being introduced to us like the new members are (or

> seeing his

> >bio come through), so I didn't even know he tried until just recently. " Ah

> well. "

> >

> >

> >

> >

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