Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 THANKS COURTNEY, YOU ARE AN INSPIRATION. I AM SAVING YOUR LETTER FOR CAROLYN. THANK YOU SO MUCH FOR RESPONDING GIVE YOUR LITTLE BROTHER A HUG. CATHERINE > 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 > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 THANKS COURTNEY, YOU ARE AN INSPIRATION. I AM SAVING YOUR LETTER FOR CAROLYN. THANK YOU SO MUCH FOR RESPONDING GIVE YOUR LITTLE BROTHER A HUG. CATHERINE > 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 > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 THANKS COURTNEY, YOU ARE AN INSPIRATION. I AM SAVING YOUR LETTER FOR CAROLYN. THANK YOU SO MUCH FOR RESPONDING GIVE YOUR LITTLE BROTHER A HUG. CATHERINE > 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 > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 THANK YOU SALLY FOR AN ENCOURAGING LETTER I AM SO HAPPY TO HEAR HOW YOU HAVE TURNED YOUR LIFE AROUND. I KNOW HOW VERY PROUD YOU MUST BE OF YOUR SON. I AM SAVING YOUR LETTER FOR CAROLYN TO READ THIS AFTERNOON. I AM HOPEFUL SHE WILL JOIN THE CREW AND RECEIVE THE BENEFITS WE ALL GET FROM IT. A WARM HUG TO YOU AND GODS BLESSINGS. CATHERINE > Re: HELP FOR MY DAUGHTER > > > 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@... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 THANKS CINDY I SURE WILL GIVE YOUR LETTER TO HER YOU TOO ARE AN INSPIRATION. HUGS AND BLESSINGS CATHERINE > Re: HELP FOR MY DAUGHTER > > > > total, complete deafness has been the hardest for me, so tell > her that since > she has had her hearing saved in one ear, she has just gotten > over what may have > been thre biggest hurdle! good luck. > > > 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 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Oh my gosh June, I read what you said and I totally agree. I'd not be as outgoing as I am now myself, being deaf that I am. But you did a remarkable turn around right when you found out. Gallaudet? That is great I kinda wish I could visit there someday. Going there is out of the question since I have a son and I love living in the middle of the country (near Chicago). The option to hear again ? Oh boy, I'd have to think about that myself. I really like it quiet now (expect for the banging, ringing and beeping haha ). But I appreciated reading your post June it was really good. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Oh my gosh June, I read what you said and I totally agree. I'd not be as outgoing as I am now myself, being deaf that I am. But you did a remarkable turn around right when you found out. Gallaudet? That is great I kinda wish I could visit there someday. Going there is out of the question since I have a son and I love living in the middle of the country (near Chicago). The option to hear again ? Oh boy, I'd have to think about that myself. I really like it quiet now (expect for the banging, ringing and beeping haha ). But I appreciated reading your post June it was really good. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Thanks , This was a well written and thought out email. I know you had intended it for , but it affected me also. Thanks, Mark ----Original Message Follows---- 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. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Thanks , This was a well written and thought out email. I know you had intended it for , but it affected me also. Thanks, Mark ----Original Message Follows---- 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. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Thanks , This was a well written and thought out email. I know you had intended it for , but it affected me also. Thanks, Mark ----Original Message Follows---- 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. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 I agree with Vicki ! " Awesome " sums you up! You are the epitome of the saying by Cicero: " The greater the difficulty, the greater the glory. " Mark ----Original Message Follows---- From: vjpcook@... Reply-To: NF2_Crewegroups To: NF2_Crewegroups Subject: Re: HELP FOR MY DAUGHTER Date: Sat, 27 May 2000 03:34:12 EDT , 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 ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Thanks, Sally ) You know, those words were for everyone! NF2 doesn't have to rule your life forever! Enough of that!!! You said that you live in Chicago? Is that anywhere near Schaumburg? I have a friend from college living there temporarily, while they build her house in Gurnee. She used to live in Palatine. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Thanks, Sally ) You know, those words were for everyone! NF2 doesn't have to rule your life forever! Enough of that!!! You said that you live in Chicago? Is that anywhere near Schaumburg? I have a friend from college living there temporarily, while they build her house in Gurnee. She used to live in Palatine. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Thanks, Sally ) You know, those words were for everyone! NF2 doesn't have to rule your life forever! Enough of that!!! You said that you live in Chicago? Is that anywhere near Schaumburg? I have a friend from college living there temporarily, while they build her house in Gurnee. She used to live in Palatine. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Hi June, Yes I think those were wise words for everyone with NF !!! Yes, I live near Schaumburg just about 20 minutes away. Does your friend also have NF? Or just someone from college ?? I almost hadn't seen this because it was addressed to 'help for my daughter' and at present I'm scanning my mail till I'll have a lot more time to read at the end of the week. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Hi June, Yes I think those were wise words for everyone with NF !!! Yes, I live near Schaumburg just about 20 minutes away. Does your friend also have NF? Or just someone from college ?? I almost hadn't seen this because it was addressed to 'help for my daughter' and at present I'm scanning my mail till I'll have a lot more time to read at the end of the week. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 June, What a beautiful expression of your feelings and situation to Carolyn! It is clear that you excel in written expressive skills. Congrats to you and all you achieved and how you have adapted to this blasted disorder. Love, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 June, What a beautiful expression of your feelings and situation to Carolyn! It is clear that you excel in written expressive skills. Congrats to you and all you achieved and how you have adapted to this blasted disorder. Love, Vicki Quote Link to comment Share on other sites More sharing options...
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