RE: HELP FOR MY DAUGHTER

May 26, 2000

,

Upon reading your response to Carolyn, I couldn't help but think " awesome "

sums you up. Your boys have learned tremendous character from you. What a

spirit! You are truly an admirable role model for this Crew and so many

others in " normal " life who find so much to complain about when they have so

little in comparison to complain about. Hope to meet you one day. Vicki

May 26, 2000

,

You are only 25 and so mature as evidence by reading your personal thoughts

and observations. Your family has to be very proud of you. You've reached

the acceptance that took me, a much older adult, 10 years to reach. Keep up

the positive spirit. Vicki (Anne's Mom)

May 26, 2000

Dear Carolyn,

I understand many of the thoughts and feelings you are going through

right now. I was diagnosed with NF at age 20 in 1977. I had my first AN

removed plus two other brain tumors at that time. I came out of this surgery

deaf in one ear and with total facial paralysis on my left side. Back then

the doctors didn't know near as much as they do now. I was the first in my

family diagnosed with NF. We didn't know I would probably have an AN on the

other side. So when it happened 9 1/2 years later, it was a total surprise.

I had the AN on my other side removed when I was 29 years old just

about 2 months shy of my and my husband's 7th wedding anniversary. By then

we had three sons. Our sons were ages 6, 4, 2, when I became deaf. As you

can surmise I had woken up from this surgery deaf but my right facial nerve

had been saved.

It is now 13 1/2 years later. I've had numerous other tumor removals.

However, it IS possible to live a full, wonderful life in spite of this NF2.

I have been a sunday school teacher, am a freelance writer, co-edit a

newsletter, write a column for another newsletter, and for the past 10 years

since 1990, my husband and I have home schooled our three sons. I have done

98 % of the teaching in our school. I use my voice to teach and my sons sign

to me if they have a question or comment. Our oldest son just finished his

first year of college. Our middle son will be a high school senior next

year, and our youngest son just received his first driver's license and will

be a junior next year in our home school.

I told you all of this because I know this is a frightening, confusing

time for you. It's one thing to know about something but it's quite another

thing to experience it. We deal with my NF as things come up. I am up on the

latest research and such because I like to know what may happen. The key

word there is MAY , not WILL. Don't let NF overwhelm you. Your husband,

children, family, and friends will love you not matter what you look like or

what happens to you. God is with you and will always love you.

If you dwell on NF and what it might do to you, you will miss life. I

would hate for that to happen to you. Your family needs you too much for you

to do this. You owe it to yourself not to do it. When you start to feel

overwhelmed, go to the bathroom, fill up the bathtub with hot water and lots

of bubbles, light a few candles, and soak for awhile. Nothing will go away

but I think you'll feel better.

If you wish to correspond with me, that's fine. I've been going down

this NF road for just about 23 years now and will be more than happy to

share with you what I've learned along the way. I do know one thing....YOU

ARE BIGGER THAN NF2 -- Don't let it define who you are !

God bless you ---- K.

HELP FOR MY DAUGHTER

> DEAR FELLOW CREWBIES,

> THIS IS CATHERINE ABI #22 ASKING FOR HELP, MOST OF YOU WILL REMEMBER

>READING MY POST THAT MY YOUNGEST DAUGHTER CAROLYN WAS JUST DIAGNOSED WITH

>NF2 FIVE WEEKS AGO.

> SHE HAD SURGERY AT HEI ON MAY 9tH FOR THE LARGEST AN ON THE RIGHT SIDE AND

>THEY WERE ABLE TO SAVE HER HEARING WHICH IS A MIRACLE. SHE WILL HAVE

SURGERY

>FOR THE AN ON THE LEFT THIS FALL.

> SHE IS HAVING A LOT OF DEPRESSION NOW

> IT IS SINKING IN WHAT THIS MEANS HAVING NF AND FEELS LIKE WHY ME?

> SHE HAS A GREAT HUSBAND AND 3 BEAUTIFUL CHILDREN AGES 6,3 AND 1.

> SHE HAS LIVED WITH THE FACT THAT HER MOM HAS NF FOR CLOSE TO 20 YEARS.

> SHE IS COMING TO MY HOUSE TOMORROW AFTERNOON AND WILL SPEND THE NIGHT

>HERE.

> I THINK IT WOULD BE HELPFUL IF SOME OF YOU WOULD POST NOTES ON HOW YOU

>FELT IN THE BEGINNING AND HOW YOU DEAL WITH LIVING WITH NF2. I TALKED TO

HER

>SOME TODAY AND SHE SAID IT HELPED.

> SHE WILL BE 29 NEXT MONTH AND I FEEL SHE NEEDS TO TALK TO YOU YOUNG

>PEOPLE ON THE CREW.

> I AM COUNTING ON YOUR HELP AND SUPPORT FOR CAROLYN WHO WILL PROBABLY

>SOON JOIN THE CREW.

> YOU ALL ARE THE GREATEST...THANKS

> AND MAY GOD CONTINUE TO BLESS EACH OF YOU.

> CATHERINE

> ABI#22

>

May 26, 2000

/Carolyn,

I just recently turned 30, and have been deaf for 9

years. When I was diagnosed at the age of 20, I felt

like all of my life's plans would never bear fruit. I

was depressed, felt like a freak, and drank like a

fish- an alcoholic fish, at that.

Now, I have never been happier than I am now. Use the

relationships you have, with friends and family.

Don't go through this alone! Tell your family how you

feel about everything, and what you need from them.

Above all, don't let this get in the way of chasinbg

your dreams. NF2 may be an obstacle, but it doesn't

have to be a way of life.

You are in our prayers,

--- catherine wrote:

> DEAR FELLOW CREWBIES,

> THIS IS CATHERINE ABI #22 ASKING FOR HELP,

> MOST OF YOU WILL REMEMBER

> READING MY POST THAT MY YOUNGEST DAUGHTER CAROLYN

> WAS JUST DIAGNOSED WITH

> NF2 FIVE WEEKS AGO.

> SHE HAD SURGERY AT HEI ON MAY 9tH FOR THE LARGEST

> AN ON THE RIGHT SIDE AND

> THEY WERE ABLE TO SAVE HER HEARING WHICH IS A

> MIRACLE. SHE WILL HAVE SURGERY

> FOR THE AN ON THE LEFT THIS FALL.

> SHE IS HAVING A LOT OF DEPRESSION NOW

> IT IS SINKING IN WHAT THIS MEANS HAVING NF AND

> FEELS LIKE WHY ME?

> SHE HAS A GREAT HUSBAND AND 3 BEAUTIFUL CHILDREN

> AGES 6,3 AND 1.

> SHE HAS LIVED WITH THE FACT THAT HER MOM HAS NF

> FOR CLOSE TO 20 YEARS.

> SHE IS COMING TO MY HOUSE TOMORROW AFTERNOON AND

> WILL SPEND THE NIGHT

> HERE.

> I THINK IT WOULD BE HELPFUL IF SOME OF YOU WOULD

> POST NOTES ON HOW YOU

> FELT IN THE BEGINNING AND HOW YOU DEAL WITH LIVING

> WITH NF2. I TALKED TO HER

> SOME TODAY AND SHE SAID IT HELPED.

> SHE WILL BE 29 NEXT MONTH AND I FEEL SHE NEEDS TO

> TALK TO YOU YOUNG

> PEOPLE ON THE CREW.

> I AM COUNTING ON YOUR HELP AND SUPPORT FOR

> CAROLYN WHO WILL PROBABLY

> SOON JOIN THE CREW.

> YOU ALL ARE THE GREATEST...THANKS

> AND MAY GOD CONTINUE TO BLESS EACH OF YOU.

> CATHERINE

> ABI#22

>

__________________________________________________

May 27, 2000

Well,

I'm coming up on my first anniversary here in a week or so. I'm 25

now, and I was diagnosed in June of '99. For me it was a relief,

because everyone that found out I had a brain tumour before I was

diagnosed (including myself) thought it was a terminal brain cancer

(this was after only a CT scan). I hugged my Neurosurgeon when he

told me it was " only " NF2, and the tumours were benign, and " easily "

removed.

I remember hoping they could fix my hearing, but then I found out I

was going to be deaf (eventually) because of the surgeries, and the

tumours. Then I did research on NF2, and saw that it truly sucked

a**. I found the crew at that time, and for me that helped a lot.

Some very caring people took me under their wings (you know who you

are) that week between when I joined the crew and had my surgery.

That was also tremendously helpful. (thank you)

I spent a whole weekend crying and mourning for myself, and nobody

seemed to understand why. That was good for me, but I really missed

the personal comfort and support a parent, sibling, or significant

other could have provided. (I had a dog at the time) I wasn't sure

I was even going to survive the surgery (perhaps that was a Freudian

slip, IOW, perhaps I didn't want to survive the surgery).

I know though, that for some people the whole NF2 thing is seriously

overwhelming, and it's easier for them to just distance themselves

from everything to do with NF2 -- ie, no research, no crew. Whatever

works for you.

I don't live with NF2, per se. As far as I'm concerned right now, I

don't have it. There's nothing I can do about NF2, so I try not to

worry about it. However, I am more than half deaf, and that is

something I deal with directly day-to-day. We each have our own

personal struggles that NF2 imposes on us, be it swallowing, walking,

hearing, seeing, or breathing. And I deal with what comes along as

best I can, asking others with similar problems how they have found

ways to make their lives easier.

So in short, your daughter will find a way to cope with all that is

happening to her, her feelings -- anxiety, fear, anger, sadness --

however that may be. Support her where she is, and if she needs a

little push, give a LITTLE push, don't force anything. Everyone

needs to move on in their lives past the feeling sorry for yourself

stage (I think), but it's OK to feel sorry for yourself. (if you

don't feel sorry for yourself, who else will?)

These are my personal thoughts and observations.

> I THINK IT WOULD BE HELPFUL IF SOME OF YOU WOULD POST NOTES ON

HOW YOU

> FELT IN THE BEGINNING AND HOW YOU DEAL WITH LIVING WITH NF2. I

TALKED TO HER

> SOME TODAY AND SHE SAID IT HELPED.

> SHE WILL BE 29 NEXT MONTH AND I FEEL SHE NEEDS TO TALK TO YOU

YOUNG

> PEOPLE ON THE CREW.

> I AM COUNTING ON YOUR HELP AND SUPPORT FOR CAROLYN WHO WILL

PROBABLY

> SOON JOIN THE CREW.

> YOU ALL ARE THE GREATEST...THANKS

> AND MAY GOD CONTINUE TO BLESS EACH OF YOU.

> CATHERINE

> ABI#22

May 27, 2000

Catherne/Carolyn,

I turned 30 in January. When I was first diagnosed with Bilateral Acoustic

Neuromas, NF II in 1985, I was hitting my prime in highschool. I was so

devastated but sought comfort in denial, that was awful to do. My family and

friends sorely wanted to help me, but I reassured them that I was 'OK', which

I was not ok doing it alone.

My first surgery was in 1986 and I cried twice: once when they shaved half my

head (remember I was 16), the second when I saw my sister (she had just had

surgery -- mine was one week after hers). My hearing in my left ear was

deafened and I had paralysis, it is only slight now.

By the time 1988 rolled around for my second surgery, I was drinking just

like (like a fish), I was a mean alcoholic! That surgery was done on

my right inner ear and the hearing was saved.

I wish to God I would have been apart of the Crew long ago. I was married in

Nov. of 1991 and everything: marriage, baby, NF were so overwhelming to me.

We divorced in the middle of 1992.

In 1994 I had my third surgery and that one completely deafened me.

What is going to save you: Your faith, family, friends, Crewbies .... call on

any of us for help. I joined the Crew just about 2 months ago maybe (after 15

years) and my life is so sweet now. I'm not saying NF is gone, I'm saying I

can talk with others who are going through the same darn thing.

You can live a full life as well as many of us are doing. I go to a private

liberal arts college in Chicago Majoring in Magazine Journalism with a Minor

in Fiction Writing. Yes, I go on site to interview people for articles. I

have my interpreter, small recorder and all. I tutor in the summer to inner

city children, am socially involved with the born/early deaf (very different

culture from late deaf). My son is a straight 'A' student, active in football

- baseball - basketball, many extra educational school activities.

I've been sober for 10 years and help other alcoholics stay sober.

NF can seem to be this looming inescapable beast, but that is only an

illusion. It has it's nasty challenges, but I foresee improvements in

technology.

If you ever want to e-mail me I would welcome hearing from you.

Love and blessings, Sally

Gospelblessings@...

May 27, 2000

Dear ,

Please send me your daughter's Email address, I would be more than happy to

send her a note.

Thanks,

Mikeabi42

May 27, 2000

Dear ,

Please send me your daughter's Email address, I would be more than happy to

send her a note.

Thanks,

Mikeabi42

May 27, 2000

Carolyn,

I don't have any magic words for you to make everything like it was before

you found out that you have NF2. I can, however, tell you about my

experiences since finding out that I have NF2. It's not as bad as you think!

I was diagnosed in early October,1983. I was into my sophomore year at a

local University and one day, I picked up the phone and put it to my left ear

(which is not normal for me since I'm right handed) and could not hear a

thing. So, I went to the ear doctor and had some tests. I withdrew from the

school and was sent to New York and I had my first AN surgery on the left

side in late October of 1983 (since I was already deaf in that ear, there was

no hearing to lose).

I went home, and within one month, I had lost all hearing on the right side

(trauma, I guess). During this time, I began learning sign language at the

nearby Deaf school. I went back to New York and had surgery on the right

side. So, now, I was totally deaf and kind of depressed. I cried and cried

for about 2 weeks. Then I thought, this is me! This is who I am! So, I

vowed to make some changes.

I went back to my old University and took some classes. I wasn't fluid in

sign language, so there was no point in having an interpreter for classes.

But, what I did was tape the lectures and my Dad (Bless him) would type the

notes out on his computer for me. I got the best grades in the class. Why?

Because I read the text book and " took " notes. But something was missing. I

needed to meet people. I drove to class, took the class, then went home.

So, I needed to make some more changes.

I looked into and transferred to Gallaudet University in Washington, DC. It

was the best decision I ever made! Although I didn't exactly fit in with any

of the cliques, I found my place. I majored in Business and Communication

Arts. Since I wasn't into sports (and they have just about everything!), I

was copywriter for the campus newspaper. I also did internships in

California, Texas, and in Washington, DC. I graduated (Cum Laude:o) and got

a temporary job at one of my old internship sites. Then a permanent one

arose in the Development Office at Gallaudet. I applied and got it! My

business and communications background really paid off!

Then tragedy stuck again! I needed another operation. Well, I'll let you

know that, since 1983, I have had 1 brain operation on the left side and 6 on

the right side. I had some of those 6 operations in Massachusetts, but most

of them were in Washington DC. I guess those tumors are stubborn buggers! I

am still Deaf. And expect that I always will be. But I wouldn't change any

of my experiences since becoming Deaf. I am tons more outgoing now than

before. I think that maybe I knew something was going on when I was in HS.

But I didn't pay any attention to it. There were alot of things going on.

But that's another story )

I'll let you in on a secret...sometimes I get rather envious of all the

fellow Crew members who can still hear. But, then I think...I would not be

who I am today if I did not have NF2 and the resulting hearing loss. I know

it's CRAZY!!! But, if there was a way to make me hearing again, I think I'd

have to think about it (and probably " pass " on it). I've spent half my life

as a hearing person and the other half as a Deaf person. I am a Deaf person

now. I can't change that. It is who I am. It is who I will be for the rest

of my life.

Cheers, Carolyn. It does get better! Trust me!

June

May 27, 2000