Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

[Guest guest]

I can't believe the latest post which I received from on this morning, telling ALL his troubles.

He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses.

After reading this I was reminded of something I recently read....maybe needs a friend like this following story ....

One day, when I was a freshman in high school, I saw a kid from my class

was walking home from school. His name was . It looked like he was

carrying all of his books. I thought to myself, "Why would anyone bring home all his books on a Friday? He must really be a nerd."

I had quite a weekend planned (parties and a football game with my friends

tomorrow afternoon), so I shrugged my shoulders and went on.

As I was walking, I saw a bunch of kids running toward him. They ran at

him, knocking all his books out of his arms and tripping him so he landed in

the dirt. His glasses went flying, and I saw them land in the grass about ten

feet from him. He looked up and I saw this terrible sadness in his eyes.

My heart went out to him. So, I jogged over to him and as he crawled around

looking for his glasses, and I saw a tear in his eye.

As I handed him his glasses, I said, "Those guys are jerks. They really

should get lives." He looked at me and said, "Hey thanks!" There was a

big smile on his face. It was one of those smiles that showed real

gratitude. I helped him pick up his books, and asked him where he lived.

As it turned out, he lived near me, so I asked him why I had never seen

him before. He said he had gone to private school before now. I would have

never hung out with a private school kid before.

We talked all the way home, and I carried his books. He turned out to be

a pretty cool kid. I asked him if he wanted to play football on Saturday

with me and my friends. He said yes. We hung all weekend and the more I got to know , the more I liked him, and my friends thought the same of him.

Monday morning came, and there was with the huge stack of books again. I stopped him and said, "Boy, you are gonna really build some serious muscles with this pile of books everyday!" He just laughed and handed me

half the books. Over the next four years, and I became best friends.

When we were seniors, we began to think about college. decided on town, and I was going to Duke. I knew that we would always be

friends, that the miles would never be a problem. He was going to be a doctor, and

I was going for business on a football scholarship.

was valedictorian of our class. I teased him all the time about

being a nerd. He had to prepare a speech for graduation. I was so glad it

wasn't me having to get up there and speak. Graduation day, I saw . He

looked great. He was one of those guys that really found himself during

high school. He filled out and actually looked good in glasses. He had

more dates than I had and all the girls loved him. Boy, sometimes I was

jealous. Today was one of those days. I could see that he was nervous

about his speech. So, I smacked him on the back and said, "Hey, big guy, you'll

be great!" He looked at me with one of those looks (the really grateful

one) and smiled. "Thanks," he said.

As he started his speech, he cleared his throat, and began. "Graduation

is a time to thank those who helped you make it through those tough years.

Your parents, your teachers, your siblings, maybe a coach...but mostly

your friends. I am here to tell all of you that being a friend to someone is

the best gift you can give them. I am going to tell you a story."

I just looked at my friend with disbelief as he told the story of the

first day we met. He had planned to kill himself over the weekend. He talked

of how he had cleaned out his locker so his Mom wouldn't have to do it later

and was carrying his stuff home. He looked hard at me and gave me a

little smile. "Thankfully, I was saved. My friend saved me from doing the

unspeakable." I heard the gasp go through the crowd as this handsome,

popular boy told us all about his weakest moment. I saw his mom and dad

looking at me and smiling that same grateful smile. Not until that moment

did I realize it's depth.

Never underestimate the power of your actions. With one small gesture you

can change a person's life. For better or for worse. God puts us all in

each other's lives to impact one another in some way. Look for God in

others.

[Guest guest]

I also wanted to express my own opinion....

I know I have had days where I am so down and sad, the negative thoughts of why go on living creep up into my head, and I turn to friends on the crew for love and support, I'd be outraged to get a note that read like ine wrote, I'm sorry, no matter how bad your life is right now, there is ALWAYS someone who is having an even harder life....keep that in mind.

I'm not preaching and I'm not shoving these opinions in your face but I hope that when I have a bad day I can post about it and not be afraid that I will recieve criticism for sharing how lousy things are going.

Caren

[Guest guest]

How was on able to access our our email addresses? I got the same message this morning, as wekk. I thought he has NF1 and operates the NF1 site on Yahoo, or is this a different ?

I can't believe the latest post which I received from on this morning, telling ALL his troubles. He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses.

[Guest guest]

MMMM, I can only cheerlead for someone part of the time. It sounds like he needs professional help, not an NF2er. I heard that he has NF1?? If he has NF2 he should join this group, it is tremendous in the support area, but I agree with ine. The trials of mental and physical that go with having this disease are too severe to try to counsel others as well. My two cents-Lowi:) anyone with change for a dime??

RE: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

I got it too ine.

Is he a member of the crew? If not he should join us. I never get any mail from that group,

As for his post....... I dont know what to say, but I agree with you, Im getting outa that group.Service.

[Guest guest]

I got it too ine.

Is he a member of the crew? If not he should join us. I never get any mail from that group,

As for his post....... I dont know what to say, but I agree with you, Im getting outa that group.

Jeff W.

-----Original Message-----From: ine Stanton Sent: Monday, March 12, 2001 3:19 PMTo: NF2_Crew Subject: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

Hello Crew

Did anyone join the Yahoo Club - Neurobrimatosis before joining the Crew, well I did. In fact, I think that's where Greg saw my post and told me about the Crew.

I can't believe the latest post which I received from on this morning, telling ALL his troubles.

He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses. I for one am going to be asked to be removed from the Yahoo Club mailing list.

Maybe it's me, but the fact that he could be sending this to people who, maybe at this particular time are down and feeling in like mind, then it's irresponsible. I wanted to reply to direct, but wasn't sure if he was willing to accept criticism at this time.

ine

[Guest guest]

How was on able to access our our email addresses? I got the same message this morning,

Hmm...now I think I know what you're talking about! I got an email msg from someone this morning. Judging from the address, I had no idea who it was from. So, I didn't even open it. I just deleted it. Why??? All this talk about viruses makes me antsy. So it's gone.

I guess this acts as a msg to Crew members who don't post, but lurk in the shadows. Please post every once in a while. If you're address doesn't look familiar, chances are that I'm going to automatically delete your message (

June

[Guest guest]

Caren

Sorry if I sounded HARD and UNSYMPATHETIC because I'm not. I feel the hurt and sorrow in every e-mail I read, but he need psychological help, more than any e-mail Yahoo Club can give. Mind you, I joined the Yahoo Club, which has NF1 & NF2 members, not an e-mail group like this Crew.

ine

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

I also wanted to express my own opinion.... I know I have had days where I am so down and sad, the negative thoughts of why go on living creep up into my head, and I turn to friends on the crew for love and support, I'd be outraged to get a note that read like ine wrote, I'm sorry, no matter how bad your life is right now, there is ALWAYS someone who is having an even harder life....keep that in mind. I'm not preaching and I'm not shoving these opinions in your face but I hope that when I have a bad day I can post about it and not be afraid that I will recieve criticism for sharing how lousy things are going. Caren

[Guest guest]

Greg

It's the same and he has been able to use our Yahoo Club - Neurobrimatosis addresses to form his e-mail list. I'm a bit annoyed about the whole thing. He doesn't have access to the NF2 Crew.

ine

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

How was on able to access our our email addresses? I got the same message this morning, as wekk. I thought he has NF1 and operates the NF1 site on Yahoo, or is this a different ?

I can't believe the latest post which I received from on this morning, telling ALL his troubles. He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses.

[Guest guest]

Hi Jeff how are you. Long time no talk. I don't have time to go into the Chat Room now. My computer time has to be limited, otherwise I end up aggravating my problem.

only uses the Yahoo Club e-mail address, but uses our personal e-mails. I have had a few mails from him, but the last one........... I have my reservations and I'm pretty sure he has NF1.

As I'm only relatively new to NF Crew, perhaps you could find out and invite him if that's would be appropriate.

ine

RE: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

I got it too ine.

Is he a member of the crew? If not he should join us. I never get any mail from that group,

As for his post....... I dont know what to say, but I agree with you, Im getting outa that group.

Jeff W.

-----Original Message-----From: ine Stanton Sent: Monday, March 12, 2001 3:19 PMTo: NF2_Crew Subject: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

Hello Crew

Did anyone join the Yahoo Club - Neurobrimatosis before joining the Crew, well I did. In fact, I think that's where Greg saw my post and told me about the Crew.

I can't believe the latest post which I received from on this morning, telling ALL his troubles.

He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses. I for one am going to be asked to be removed from the Yahoo Club mailing list.

Maybe it's me, but the fact that he could be sending this to people who, maybe at this particular time are down and feeling in like mind, then it's irresponsible. I wanted to reply to direct, but wasn't sure if he was willing to accept criticism at this time.

ine

[Guest guest]

I joined their club about...6 months ago just to see what the NF1 people were talking about and maybe catch a few stray NF2 people as well. Needless to say, I was gone from there fast! It's a different world and they interact very differently than we do. From what I read, they appeared to be very angry at each other. It was a different world.

greg

It's the same and he has been able to use our Yahoo Club - Neurobrimatosis addresses to form his e-mail list. I'm a bit annoyed about the whole thing. He doesn't have access to the NF2 Crew.

ine

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

How was on able to access our our email addresses? I got the same message this morning, as wekk. I thought he has NF1 and operates the NF1 site on Yahoo, or is this a different ?

I can't believe the latest post which I received from on this morning, telling ALL his troubles. He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses.

[Guest guest]

Same here Greg. I belonged to an NF group also that was mostly 1ers. They seemed very angry. One fight, two mothers were bickering about the birth defects of their children "and I still love them". It really was very depressing. A whole lot different then here, the crew is kinda like a family.-Lowi:) VERY glad to be here

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

How was on able to access our our email addresses? I got the same message this morning, as wekk. I thought he has NF1 and operates the NF1 site on Yahoo, or is this a different ?

I can't believe the latest post which I received from on this morning, telling ALL his troubles. He made mention of "committing suicide". He certainly isn't suitable to have access to many people's e-mail addresses.

[Guest guest]

In a message dated 3/15/01 6:04:54 AM Pacific Standard Time, ashley@...

writes:

<< t seems that most NF2 people kept their " have a good time " gene. Maybe

NF1'ers lost theirs. Anger gets you no where but to a quick ulcer and a

shitty time.

Mikey A >>

I agree on this about the NF2 people. I have seen no bickering here just much

positive thought and interaction. If I went around ticked off all the time

like some people I know I would have a huge hole in my stomach and be in even

worse shape than I am now. Even though I have been having a rough time

mentally, I am still going to keep trying and not become a bitter shell of a

human being. Just my two cents worth........Lori Jo

[Guest guest]

.. Even though I have been having a rough time mentally, I am still going to keep trying and not become a bitter shell of a human being. Just my two cents worth........Lori Jo

I couldn't have said it any better, I would say that was

worth at least three cents .........lol,

[Guest guest]

It seems that most NF2 people kept their " have a good time "

gene. Maybe NF1'ers lost theirs. Anger gets you no where but

to a quick ulcer and a shitty time.

Mikey A

At 04:54 PM 3/13/01 -0500, you wrote:

I

joined their club about...6 months ago just to see what the NF1 people

were talking about and maybe catch a few stray NF2 people as well.

Needless to say, I was gone from there fast! It's a different world

and they interact very differently than we do. From what I read,

they appeared to be very angry at each other. It was a different

world.

greg

It's the same and he has been

able to use our Yahoo Club - Neurobrimatosis addresses to form his e-mail

list. I'm a bit annoyed about the whole thing. He doesn't

have access to the NF2 Crew.

ine

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

How was on able to access our our email addresses? I got the same message this morning, as wekk. I thought he has NF1 and operates the NF1 site on Yahoo, or is this a different ?

I can't believe the latest post which I received from on this

morning, telling ALL his troubles.

He made mention of " committing suicide " . He certainly isn't suitable to

have access to many people's e-mail addresses.

[Guest guest]

Lori Jo.

" Just my two cents worth........Lori Jo " . Well your two cents worth is

always well thought out, valuable reading. I've had my regrets for passing

on my comments about the original e-mail I received, but it was such a shock

to receive something like that. Thanks for your support.

ine

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

> In a message dated 3/15/01 6:04:54 AM Pacific Standard Time,

ashley@...

> writes:

>

> << t seems that most NF2 people kept their " have a good time " gene. Maybe

> NF1'ers lost theirs. Anger gets you no where but to a quick ulcer and a

> shitty time.

> Mikey A >>

> I agree on this about the NF2 people. I have seen no bickering here just

much

> positive thought and interaction. If I went around ticked off all the time

> like some people I know I would have a huge hole in my stomach and be in

even

> worse shape than I am now. Even though I have been having a rough time

> mentally, I am still going to keep trying and not become a bitter shell of

a

> human being. Just my two cents worth........Lori Jo

>

>

>

>

[Guest guest]

I couldn't have said it any better, I would say that was worth at least three cents .........lol,

Ditto, !

Boy, this is kind of weird with so few on line, isn't it?

[Guest guest]

In a message dated 3/15/01 8:09:34 PM Pacific Standard Time, bentoak4@...

writes:

<< Boy, this is kind of weird with so few on line, isn't it?

>>

It sure is:)It's so quiet

Lana

[Guest guest]

Boy, this is kind of weird with so few on line, isn't it?

Good Morning, !

You're right, it is so quiet with everyone gone! I wanted to go, but

just wasn't sure if I was ready. I just found out about my NF2 in

November last year, so I'm still trying to adjust to all the changes

in my life, it can sure overwhelm a person, know what I mean?

Thanks for the offer of some extra support, I don't think any of us

could ever get too much! Gotta go, I'll talk to you some more later!

Take Care,

[Guest guest]

Sure is. I have been quite bombarded being new to all this

Good Morning, Larry!

How have you doing? I haven't heard from you in a while, hope

everything is going well!

Take Care,

[Guest guest]

Sure is. I have been quite bombarded being new to all this

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

Boy, this is kind of weird with so few on line, isn't it? Good Morning, ! You're right, it is so quiet with everyone gone! I wanted to go, but just wasn't sure if I was ready. I just found out about my NF2 in November last year, so I'm still trying to adjust to all the changes in my life, it can sure overwhelm a person, know what I mean? Thanks for the offer of some extra support, I don't think any of us could ever get too much! Gotta go, I'll talk to you some more later! Take Care,

[Guest guest]

We should have a party here while the Vegas people are gone....don't we have a chat room we can go to? Anyone have a good night that might work for most everyone..? Hugs to you all! Carol

I'm with you, Carol, see what kind of response

you get and let me know. Count me in! I'm sure

Lori Jo will join us .........

[Guest guest]

Well guys...you are still stuck with me..hee hee hee!!

Lori Jo...how are you doing?? E-mail me if you want to talk okay?

horizons@...

I just came from my doctor today and have another tumor behind my right

eye. It is in between the muscle and 6th nerve. He will not touch it as

blindness will occur so is just watching it......if it starts growing I

am sunk!!

I see my neuro-opthomolgist next week about my left eye and the double

vision.....hopefully they can do "something" with that.

YEP...I want some sympathy...pathetic huh? LOL LOL!!!!

I am so tired.

We should have a party here while the Vegas people are gone....don't

we have a chat room we can go to? Anyone have a good night that might work

for most everyone..?

Hugs to you all!

Carol

Kizzycom@... wrote:

In a message dated 3/15/01 8:09:34 PM Pacific Standard

Time, bentoak4@...

writes:

<< Boy, this is kind of weird with so few on line, isn't it?

>>

It sure is:)It's so quiet

Lana

[Guest guest]

If you go to chat, please let me know and tell me how to get there. Thanks

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

We should have a party here while the Vegas people are gone....don't we have a chat room we can go to? Anyone have a good night that might work for most everyone..? Hugs to you all! Carol I'm with you, Carol, see what kind of response you get and let me know. Count me in! I'm sure Lori Jo will join us .........

[Guest guest]

Carol

Sorry to hear about your eye problems, sight is so precious.

I agree it would be wonderful if we could chat somewhere. I understand your feeling "tired". It just never stops. When you think you have climbed the mountain, you find it's only a hill and there are more to climb.

Carol, being stuck with you is OK with me. I'm not sure if you remember, but you were one of the positive replies I received when I was contemplating my C2 surgery. That surgery has enable me to be here to keep climbing.

LET'S PARTY.

ine

Re: (NON NF2 CREW mail) Yahoo! Clubs Neurofibromatosis

Well guys...you are still stuck with me..hee hee hee!! Lori Jo...how are you doing?? E-mail me if you want to talk okay? horizons@... I just came from my doctor today and have another tumor behind my right eye. It is in between the muscle and 6th nerve. He will not touch it as blindness will occur so is just watching it......if it starts growing I am sunk!! I see my neuro-opthomolgist next week about my left eye and the double vision.....hopefully they can do "something" with that. YEP...I want some sympathy...pathetic huh? LOL LOL!!!! I am so tired. We should have a party here while the Vegas people are gone....don't we have a chat room we can go to? Anyone have a good night that might work for most everyone..? Hugs to you all! Carol Kizzycom@... wrote: << Boy, this is kind of weird with so few on line, isn't it? >> It sure is:)It's so quiet Lana

[Guest guest]

ine...thank-you so much. Everything I do is with my sight as far as

my dolls, sewing, crafty things.....it depresses me....

I will see you on line!!!

Hugs, Carol

ine Stanton wrote:

CarolSorry

to hear about your eye problems, sight is so precious.I

agree it would be wonderful if we could chat somewhere. I understand

your feeling "tired". It just never stops. When you think you

have climbed the mountain, you find it's only a hill and there are more

to climb.Carol,

being stuck with you is OK with me. I'm not sure if you remember,

but you were one of the positive replies I received when I was contemplating

my C2 surgery. That surgery has enable me to be here to keep climbing.LET'S

PARTY.ine