Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Donna you sure have a way with words. But for the record: If I started the " no closure " posts going on let me just say I am not dieing nor do I feel like I will die from this. In fact i consider myself healthier than most non nf people I know (I'm serious)I just meant " it sucks that we can't get rid of it and will have to live our lives with the uncertainty -- and pray it is not too unmerciful with whatever path nf2 takes. Even though no one is guaranteed good health, our odds are not quiet as good as a non nf2 person. " Donna, do you know what triggred the seizure? scary! hope you are driving soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Donna you sure have a way with words. But for the record: If I started the " no closure " posts going on let me just say I am not dieing nor do I feel like I will die from this. In fact i consider myself healthier than most non nf people I know (I'm serious)I just meant " it sucks that we can't get rid of it and will have to live our lives with the uncertainty -- and pray it is not too unmerciful with whatever path nf2 takes. Even though no one is guaranteed good health, our odds are not quiet as good as a non nf2 person. " Donna, do you know what triggred the seizure? scary! hope you are driving soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Donna you sure have a way with words. But for the record: If I started the " no closure " posts going on let me just say I am not dieing nor do I feel like I will die from this. In fact i consider myself healthier than most non nf people I know (I'm serious)I just meant " it sucks that we can't get rid of it and will have to live our lives with the uncertainty -- and pray it is not too unmerciful with whatever path nf2 takes. Even though no one is guaranteed good health, our odds are not quiet as good as a non nf2 person. " Donna, do you know what triggred the seizure? scary! hope you are driving soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 , I changed both neurologists and neurosurgeons at the first of this year, and between the two of them they had me on a LOT of meds! I believe that not taking my Neurotin is what set this off, but there were many factors. I had not slept in about 48 hours, hadn't ate and therefore was not taking my medicine correctly. I was also in a bad emotional state. My neurologist said that I had tumors in the area that could trigger this, but I have never had trouble with it before. She also said that we would never know exactly what caused it. Ha! Ha! Jimmy!! I happened to be driving MY car which I totaled!! Donna > Donna you sure have a way with words. But for the record: > > If I started the " no closure " posts going on let me just say I am not dieing > nor do I feel like I will die from this. In fact i consider myself healthier > than most non nf people I know (I'm serious)I just meant " it sucks that we > can't get rid of it and will have to live our lives with the uncertainty -- > and pray it is not too unmerciful with whatever path nf2 takes. Even though > no one is guaranteed good health, our odds are not quiet as good as a non > nf2 person. " > > > Donna, do you know what triggred the seizure? scary! hope you are driving > soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 , I changed both neurologists and neurosurgeons at the first of this year, and between the two of them they had me on a LOT of meds! I believe that not taking my Neurotin is what set this off, but there were many factors. I had not slept in about 48 hours, hadn't ate and therefore was not taking my medicine correctly. I was also in a bad emotional state. My neurologist said that I had tumors in the area that could trigger this, but I have never had trouble with it before. She also said that we would never know exactly what caused it. Ha! Ha! Jimmy!! I happened to be driving MY car which I totaled!! Donna > Donna you sure have a way with words. But for the record: > > If I started the " no closure " posts going on let me just say I am not dieing > nor do I feel like I will die from this. In fact i consider myself healthier > than most non nf people I know (I'm serious)I just meant " it sucks that we > can't get rid of it and will have to live our lives with the uncertainty -- > and pray it is not too unmerciful with whatever path nf2 takes. Even though > no one is guaranteed good health, our odds are not quiet as good as a non > nf2 person. " > > > Donna, do you know what triggred the seizure? scary! hope you are driving > soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Very well put . So let me admit the obvious, living with NF2 made me a cynical about being an optimist. Sure I could put on a smile and a happy, optimistic little face and say, " gee, it sure isn't that bad " but is it? " Closure " to me also is not having to live with " uncertainty " . I'll give you an example that best suits me, I was/am ready and willing to accept that NF2 would take away my hearing so I learned Signed, worked on my lip reading, and bought all the assistive devices for the deaf so I was finding " closure " with deafness. BUT, I wasn't expecting NF2 to take away my balance as well. Which meant I couldn't do certain activities without worrying about falling and breaking my neck or cracking my head open. I wasn't expecting NF2 to produce tumors anywhere along my brain or spinal cord. So pardon me for being a little pessimistic because everytime there's a calm, a storm approaches. So for the people with the advice of " living life to the fullest " , define that for me please? ----Original Message Follows---- If I started the " no closure " posts going on let me just say I am not dieing nor do I feel like I will die from this. In fact i consider myself healthier than most non nf people I know (I'm serious)I just meant " it sucks that we can't get rid of it and will have to live our lives with the uncertainty -- and pray it is not too unmerciful with whatever path nf2 takes. Even though no one is guaranteed good health, our odds are not quiet as good as a non nf2 person. " ________________________________________________________________________ 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 August 11, 2000 Report Share Posted August 11, 2000 Very well put . So let me admit the obvious, living with NF2 made me a cynical about being an optimist. Sure I could put on a smile and a happy, optimistic little face and say, " gee, it sure isn't that bad " but is it? " Closure " to me also is not having to live with " uncertainty " . I'll give you an example that best suits me, I was/am ready and willing to accept that NF2 would take away my hearing so I learned Signed, worked on my lip reading, and bought all the assistive devices for the deaf so I was finding " closure " with deafness. BUT, I wasn't expecting NF2 to take away my balance as well. Which meant I couldn't do certain activities without worrying about falling and breaking my neck or cracking my head open. I wasn't expecting NF2 to produce tumors anywhere along my brain or spinal cord. So pardon me for being a little pessimistic because everytime there's a calm, a storm approaches. So for the people with the advice of " living life to the fullest " , define that for me please? ----Original Message Follows---- If I started the " no closure " posts going on let me just say I am not dieing nor do I feel like I will die from this. In fact i consider myself healthier than most non nf people I know (I'm serious)I just meant " it sucks that we can't get rid of it and will have to live our lives with the uncertainty -- and pray it is not too unmerciful with whatever path nf2 takes. Even though no one is guaranteed good health, our odds are not quiet as good as a non nf2 person. " ________________________________________________________________________ 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 August 11, 2000 Report Share Posted August 11, 2000 Mark, You are a VERY SAD person! I want to tell you something, right now I had to send my son to the grocery store because my legs are hurting SO BAD from my last few " busy " days. I am NOT saying that my life is a ROSE GARDEN, not at all! I am just saying that I am in NO WAY ready to die! I am one of those people that Marcus talked about that believes in God, I believe I will go to a better place, but I am not ready to quit living the life I have! I am a spontaneous mutation that had a son before I knew I had NF2, and gave this disease to my son. I have as much right as the next person to hate it, and I do! But I don't hate my life, Mark. NF2 does not control my life, it can keep me from doing some things, but I will be DAMNED if I let it control my life! Donna -- In NF2_Crewegroups, " Mark Sarmac " <mark_sarmac@h...> wrote: > Very well put . So let me admit the obvious, living with NF2 made me a > cynical about being an optimist. Sure I could put on a smile and a happy, > optimistic little face and say, " gee, it sure isn't that bad " but is it? > " Closure " to me also is not having to live with " uncertainty " . I'll give you > an example that best suits me, I was/am ready and willing to accept that NF2 > would take away my hearing so I learned Signed, worked on my lip reading, > and bought all the assistive devices for the deaf so I was finding " closure " > with deafness. BUT, I wasn't expecting NF2 to take away my balance as well. > Which meant I couldn't do certain activities without worrying about falling > and breaking my neck or cracking my head open. I wasn't expecting NF2 to > produce tumors anywhere along my brain or spinal cord. So pardon me for > being a little pessimistic because everytime there's a calm, a storm > approaches. > > So for the people with the advice of " living life to the fullest " , define > that for me please? > > > ----Original Message Follows---- > From: Henrion <cinnyd@g...> > > > If I started the " no closure " posts going on let me just say I am not dieing > nor do I feel like I will die from this. In fact i consider myself healthier > than most non nf people I know (I'm serious)I just meant " it sucks that we > can't get rid of it and will have to live our lives with the uncertainty -- > and pray it is not too unmerciful with whatever path nf2 takes. Even though > no one is guaranteed good health, our odds are not quiet as good as a non > nf2 person. " > > > > > ______________________________________________________________________ __ > 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 August 11, 2000 Report Share Posted August 11, 2000 Mark, You are a VERY SAD person! I want to tell you something, right now I had to send my son to the grocery store because my legs are hurting SO BAD from my last few " busy " days. I am NOT saying that my life is a ROSE GARDEN, not at all! I am just saying that I am in NO WAY ready to die! I am one of those people that Marcus talked about that believes in God, I believe I will go to a better place, but I am not ready to quit living the life I have! I am a spontaneous mutation that had a son before I knew I had NF2, and gave this disease to my son. I have as much right as the next person to hate it, and I do! But I don't hate my life, Mark. NF2 does not control my life, it can keep me from doing some things, but I will be DAMNED if I let it control my life! Donna -- In NF2_Crewegroups, " Mark Sarmac " <mark_sarmac@h...> wrote: > Very well put . So let me admit the obvious, living with NF2 made me a > cynical about being an optimist. Sure I could put on a smile and a happy, > optimistic little face and say, " gee, it sure isn't that bad " but is it? > " Closure " to me also is not having to live with " uncertainty " . I'll give you > an example that best suits me, I was/am ready and willing to accept that NF2 > would take away my hearing so I learned Signed, worked on my lip reading, > and bought all the assistive devices for the deaf so I was finding " closure " > with deafness. BUT, I wasn't expecting NF2 to take away my balance as well. > Which meant I couldn't do certain activities without worrying about falling > and breaking my neck or cracking my head open. I wasn't expecting NF2 to > produce tumors anywhere along my brain or spinal cord. So pardon me for > being a little pessimistic because everytime there's a calm, a storm > approaches. > > So for the people with the advice of " living life to the fullest " , define > that for me please? > > > ----Original Message Follows---- > From: Henrion <cinnyd@g...> > > > If I started the " no closure " posts going on let me just say I am not dieing > nor do I feel like I will die from this. In fact i consider myself healthier > than most non nf people I know (I'm serious)I just meant " it sucks that we > can't get rid of it and will have to live our lives with the uncertainty -- > and pray it is not too unmerciful with whatever path nf2 takes. Even though > no one is guaranteed good health, our odds are not quiet as good as a non > nf2 person. " > > > > > ______________________________________________________________________ __ > 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 August 11, 2000 Report Share Posted August 11, 2000 mark wrote: So for the people with the advice of " living life to the fullest " , define that for me please? OK as follows It means we do the best we can with what ever we have at that time. It means we want to enjoy what we have while we have it. It means we don't want to be remembered as whiners. For my own kids, I want them to learn by example. I want them to know that life is tough regardless of NF. I want them to know that no matter how tough life became for me I never gave up. Mark I was nasty to you and that was wrong of me, also may have breached crew rules. 'Stand Tall' Mark, don't wallow in what may have been. RE: WHAT is going on? > Very well put . So let me admit the obvious, living with NF2 made me a > cynical about being an optimist. Sure I could put on a smile and a happy, > optimistic little face and say, " gee, it sure isn't that bad " but is it? > " Closure " to me also is not having to live with " uncertainty " . I'll give you > an example that best suits me, I was/am ready and willing to accept that NF2 > would take away my hearing so I learned Signed, worked on my lip reading, > and bought all the assistive devices for the deaf so I was finding " closure " > with deafness. BUT, I wasn't expecting NF2 to take away my balance as well. > Which meant I couldn't do certain activities without worrying about falling > and breaking my neck or cracking my head open. I wasn't expecting NF2 to > produce tumors anywhere along my brain or spinal cord. So pardon me for > being a little pessimistic because everytime there's a calm, a storm > approaches. > > So for the people with the advice of " living life to the fullest " , define > that for me please? > > > ----Original Message Follows---- > > > > If I started the " no closure " posts going on let me just say I am not dieing > nor do I feel like I will die from this. In fact i consider myself healthier > than most non nf people I know (I'm serious)I just meant " it sucks that we > can't get rid of it and will have to live our lives with the uncertainty -- > and pray it is not too unmerciful with whatever path nf2 takes. Even though > no one is guaranteed good health, our odds are not quiet as good as a non > nf2 person. " > > > > > ________________________________________________________________________ > 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 August 11, 2000 Report Share Posted August 11, 2000 mark wrote: So for the people with the advice of " living life to the fullest " , define that for me please? OK as follows It means we do the best we can with what ever we have at that time. It means we want to enjoy what we have while we have it. It means we don't want to be remembered as whiners. For my own kids, I want them to learn by example. I want them to know that life is tough regardless of NF. I want them to know that no matter how tough life became for me I never gave up. Mark I was nasty to you and that was wrong of me, also may have breached crew rules. 'Stand Tall' Mark, don't wallow in what may have been. RE: WHAT is going on? > Very well put . So let me admit the obvious, living with NF2 made me a > cynical about being an optimist. Sure I could put on a smile and a happy, > optimistic little face and say, " gee, it sure isn't that bad " but is it? > " Closure " to me also is not having to live with " uncertainty " . I'll give you > an example that best suits me, I was/am ready and willing to accept that NF2 > would take away my hearing so I learned Signed, worked on my lip reading, > and bought all the assistive devices for the deaf so I was finding " closure " > with deafness. BUT, I wasn't expecting NF2 to take away my balance as well. > Which meant I couldn't do certain activities without worrying about falling > and breaking my neck or cracking my head open. I wasn't expecting NF2 to > produce tumors anywhere along my brain or spinal cord. So pardon me for > being a little pessimistic because everytime there's a calm, a storm > approaches. > > So for the people with the advice of " living life to the fullest " , define > that for me please? > > > ----Original Message Follows---- > > > > If I started the " no closure " posts going on let me just say I am not dieing > nor do I feel like I will die from this. In fact i consider myself healthier > than most non nf people I know (I'm serious)I just meant " it sucks that we > can't get rid of it and will have to live our lives with the uncertainty -- > and pray it is not too unmerciful with whatever path nf2 takes. Even though > no one is guaranteed good health, our odds are not quiet as good as a non > nf2 person. " > > > > > ________________________________________________________________________ > 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 August 11, 2000 Report Share Posted August 11, 2000 Crew, If there's anyone on her who has never been down in the dumps over NF2 and what it puts you/your loved ones through, raise your hand. I'm not suggesting that we should all go around like Winnie the Pooh's Eeyore (is that spelled right?) but don't we need to recognize that occasionally someone will need to express the frustration and the absolute depression that NF2 can cause? Maybe I didn't see the Crew rule that said we had to be Little Sunshine all the time. Today, Fred was in the exact same place Mark seems to have been in for the last couple of days. NF2 is hard and is depressing and is a struggle. If all the fighting it would make it better, then I can't think of anyone here who wouldn't step into the ring. But sometimes it feels like you fight and fight and you're getting worn out while the other team brings in fresh players and you don't have a replacement. What's wrong with saying that? If we can't express our frustration here, where can we express it? People jump up and down over notes like Mark's. I wonder why. Every time we lose another Crew member to NF2, most of the Crew shuts down and goes underground for a week or two. Dying is part of living. We don't like to see it that way, but we will all get there eventually. Some sooner, some later. Maybe NF2 will be the cause, maybe it won't. After the last breath, it won't make any difference, will it? Sadness is also part of living. We take turns at it. If we are only allowed to express our happy feelings here, that is sad. To everything there is a season. Look it up, huh? Mark has been around for awhile. He doesn't seem to be an Eeyore type to me. If he's hit a hard stretch, can't he come to his friends here to express that? We all know what happens when we express those feelings to people who are clueless about NF2. Their eyes glaze over, or they start walking on the other side of the street because they can't even hear the word tumor without freaking out. They can't relate and don't want to hear it. If this makes you mad at me, well, that's life. You still have a delete button. Last time I checked this was a support group. Let's see support in action. An occasional expression of empathy wouldn't hurt. Mark, I hope things get better for you and for Fred, and for all the people who are feeling the way you guys are but may be afraid to express it and even for the ones who haven't seen that day but will soon understand it. Your honesty takes guts. Hang in there. God Bless. ...Donna (Still hoping to collect hearing aids for Crew members who need them from Crew members who no longer can use them.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 In a message dated 8/11/00 9:17:39 PM Pacific Daylight Time, hmschoolma@... writes: << Me so >> Donna, What a great post to the whole Crew. Yes, we are here to be supportive like those without the disorder could never be. When Anne had her last surgery, it felt so good to hear from some members because I know they cared with first hand understanding. I have printed your post to keep in my favorite sayings section of a book. Donna, how are you doing? Long time, no hear. Vicki in So. CAL. Redondo Beach. Thanks again for the boost to keep us all on track. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 I think that was a good description . Marie RE: WHAT is going on? > > " Closure " to me also is not having to live with " uncertainty " . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Ya'll are gonna scare ine to death! Bri is the nickname that Marnie and I gave to ! He is a mess, ine, but a GOOD friend! And as for that other Aussie, Marcus, he is NOT, let me see what 's words were...a terrible man! He IS a good father and a great friend. I hear he is a decent contractor too! :-D Thanks Donna BUT do you know anyone who would do this?????? He He He He He ~|)))))))) On the Gold Coast of Australia a hip young 40 year old man goes out and buys a 1998 Ferrari GTO . It is the best and most expensive car available in the world, costing about $500,000. He takes it out for a spin and while stopping for a red light, an old man on a moped (both looking about 90 years old)() pulls up next to him. The old man looks over the sleek, shiny surface of the car and asks, " What kind of car ya' got there, sonny? " The young man replies, " A 1998 Ferrari GTO. They cost about a half million dollars! " That's a lot of money, " says the old man, shocked. " Why does it cost so much? " Because this car can do up to 320 miles an hour! " states the cool dude proudly. The moped driver asks, " Can I take a look inside? " Sure, " replies the owner. So the old man pokes his head in the window and looks around. Leaning back on his moped, the old man says, " That's a pretty nice car, all right! " Just then the light changes so the guy decides to show the old man what his car can do. He floors it, and within 30 seconds the speedometer reads 320 mph. Suddenly, he notices a dot in his rear view mirror. it seems to be getting closer! He slows down to see what it could be and suddenly, whhhoooossshhh! Something whips by him, going much faster! What on earth could be going faster than my Ferrari?! " the young man asks himself. Then, ahead of him, he sees a dot coming toward him. Whoooooosh! It goes by again, heading the opposite direction! And it almost looked like the old man on the moped! " Couldn't be, " thinks the guy. How could a moped outrun a Ferrari?! " Again, he sees a dot in his rear view mirror! Whooooosh!! Ka-BbblaMMM! It plows into the back of his car, demolishing the rear end. The young man jumps out, and it IS the old man!!! Of course, the moped and the old man are hurting for certain. He runs up to the dying old man and says, " You're badly hurt! Is there anything I can do for you? " The old man moans and replies, " Yes, Unhook my suspenders from your side-view mirror! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Eventhough, I may not be the best person to say it, but allow me to say it anyways: I LOVE YA DONNA, WELL PUT!!! WOO HOOO!! =D Mark " If you want the sunshine, you gotta put up with the rain " --Dolly Parton ----Original Message Follows---- From: hmschoolma@... Reply-To: NF2_Crewegroups To: NF2_Crewegroups Subject: RE: WHAT is going on? Date: Sat, 12 Aug 2000 00:15:21 EDT Crew, If there's anyone on her who has never been down in the dumps over NF2 and what it puts you/your loved ones through, raise your hand. I'm not suggesting that we should all go around like Winnie the Pooh's Eeyore (is that spelled right?) but don't we need to recognize that occasionally someone will need to express the frustration and the absolute depression that NF2 can cause? Maybe I didn't see the Crew rule that said we had to be Little Sunshine all the time. Today, Fred was in the exact same place Mark seems to have been in for the last couple of days. NF2 is hard and is depressing and is a struggle. If all the fighting it would make it better, then I can't think of anyone here who wouldn't step into the ring. But sometimes it feels like you fight and fight and you're getting worn out while the other team brings in fresh players and you don't have a replacement. What's wrong with saying that? If we can't express our frustration here, where can we express it? People jump up and down over notes like Mark's. I wonder why. Every time we lose another Crew member to NF2, most of the Crew shuts down and goes underground for a week or two. Dying is part of living. We don't like to see it that way, but we will all get there eventually. Some sooner, some later. Maybe NF2 will be the cause, maybe it won't. After the last breath, it won't make any difference, will it? Sadness is also part of living. We take turns at it. If we are only allowed to express our happy feelings here, that is sad. To everything there is a season. Look it up, huh? Mark has been around for awhile. He doesn't seem to be an Eeyore type to me. If he's hit a hard stretch, can't he come to his friends here to express that? We all know what happens when we express those feelings to people who are clueless about NF2. Their eyes glaze over, or they start walking on the other side of the street because they can't even hear the word tumor without freaking out. They can't relate and don't want to hear it. If this makes you mad at me, well, that's life. You still have a delete button. Last time I checked this was a support group. Let's see support in action. An occasional expression of empathy wouldn't hurt. Mark, I hope things get better for you and for Fred, and for all the people who are feeling the way you guys are but may be afraid to express it and even for the ones who haven't seen that day but will soon understand it. Your honesty takes guts. Hang in there. God Bless. ...Donna (Still hoping to collect hearing aids for Crew members who need them from Crew members who no longer can use them.) ________________________________________________________________________ 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 August 12, 2000 Report Share Posted August 12, 2000 Eventhough, I may not be the best person to say it, but allow me to say it anyways: I LOVE YA DONNA, WELL PUT!!! WOO HOOO!! =D Mark " If you want the rainbow, you gotta put up with the rain " --Dolly Parton ----Original Message Follows---- From: hmschoolma@... Reply-To: NF2_Crewegroups To: NF2_Crewegroups Subject: RE: WHAT is going on? Date: Sat, 12 Aug 2000 00:15:21 EDT Crew, If there's anyone on her who has never been down in the dumps over NF2 and what it puts you/your loved ones through, raise your hand. I'm not suggesting that we should all go around like Winnie the Pooh's Eeyore (is that spelled right?) but don't we need to recognize that occasionally someone will need to express the frustration and the absolute depression that NF2 can cause? Maybe I didn't see the Crew rule that said we had to be Little Sunshine all the time. Today, Fred was in the exact same place Mark seems to have been in for the last couple of days. NF2 is hard and is depressing and is a struggle. If all the fighting it would make it better, then I can't think of anyone here who wouldn't step into the ring. But sometimes it feels like you fight and fight and you're getting worn out while the other team brings in fresh players and you don't have a replacement. What's wrong with saying that? If we can't express our frustration here, where can we express it? People jump up and down over notes like Mark's. I wonder why. Every time we lose another Crew member to NF2, most of the Crew shuts down and goes underground for a week or two. Dying is part of living. We don't like to see it that way, but we will all get there eventually. Some sooner, some later. Maybe NF2 will be the cause, maybe it won't. After the last breath, it won't make any difference, will it? Sadness is also part of living. We take turns at it. If we are only allowed to express our happy feelings here, that is sad. To everything there is a season. Look it up, huh? Mark has been around for awhile. He doesn't seem to be an Eeyore type to me. If he's hit a hard stretch, can't he come to his friends here to express that? We all know what happens when we express those feelings to people who are clueless about NF2. Their eyes glaze over, or they start walking on the other side of the street because they can't even hear the word tumor without freaking out. They can't relate and don't want to hear it. If this makes you mad at me, well, that's life. You still have a delete button. Last time I checked this was a support group. Let's see support in action. An occasional expression of empathy wouldn't hurt. Mark, I hope things get better for you and for Fred, and for all the people who are feeling the way you guys are but may be afraid to express it and even for the ones who haven't seen that day but will soon understand it. Your honesty takes guts. Hang in there. God Bless. ...Donna (Still hoping to collect hearing aids for Crew members who need them from Crew members who no longer can use them.) ________________________________________________________________________ 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 August 12, 2000 Report Share Posted August 12, 2000 Donna, That was a great post, I couldn't agree with you anymore, nor could I add to it. Let Fred know I was asking for him, hoping he's doing as well as can be expected. Mark I hope things get better for you, hang in there man! Hugs, Mikeabi42 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Hurray Donna! You said what I hesitated to say because I wasn't up to people jumping all over me! But I sent Mark a private e mail to tell him I agreed with him! I think there is a difference between the panhandlers at the airport who want to sell you pencils because they are deaf, and someone like Mark who is fighting his way thru college and try ing to have a career. You know me, Donna, and I like to think I am an optimist. But I have always said I preferred quality over quantity. My kids are raised, I have no husband, and I don't want " quantity " that makes me dependent on loved ones, and that sure looks like where I'm at! Count me in with Fred and Mark. Marie RE: WHAT is going on? >Crew, > If there's anyone on her who has never been down in the dumps over NF2 and >what it puts you/your loved ones through, raise your hand. I'm not >suggesting that we should all go around like Winnie the Pooh's Eeyore (is >that spelled right?) but don't we need to recognize that occasionally someone >will need to express the frustration and the absolute depression that NF2 can >cause? Maybe I didn't see the Crew rule that said we had to be Little >Sunshine all the time. > Today, Fred was in the exact same place Mark seems to have been in for the >last couple of days. NF2 is hard and is depressing and is a struggle. If >all the fighting it would make it better, then I can't think of anyone here >who wouldn't step into the ring. But sometimes it feels like you fight and >fight and you're getting worn out while the other team brings in fresh >players and you don't have a replacement. What's wrong with saying that? If >we can't express our frustration here, where can we express it? > People jump up and down over notes like Mark's. I wonder why. > Every time we lose another Crew member to NF2, most of the Crew shuts >down and goes underground for a week or two. > Dying is part of living. We don't like to see it that way, but we will >all get there eventually. Some sooner, some later. Maybe NF2 will be the >cause, maybe it won't. After the last breath, it won't make any difference, >will it? > Sadness is also part of living. We take turns at it. If we are only >allowed to express our happy feelings here, that is sad. To everything there >is a season. Look it up, huh? > Mark has been around for awhile. He doesn't seem to be an Eeyore type to >me. If he's hit a hard stretch, can't he come to his friends here to express >that? We all know what happens when we express those feelings to people who >are clueless about NF2. Their eyes glaze over, or they start walking on the >other side of the street because they can't even hear the word tumor without >freaking out. They can't relate and don't want to hear it. > If this makes you mad at me, well, that's life. You still have a delete >button. Last time I checked this was a support group. Let's see support in >action. An occasional expression of empathy wouldn't hurt. > > > Mark, I hope things get better for you and for Fred, and for all the >people who are feeling the way you guys are but may be afraid to express it >and even for the ones who haven't seen that day but will soon understand it. >Your honesty takes guts. Hang in there. > God Bless. > > ...Donna (Still hoping to collect hearing aids for Crew members who >need them from Crew members who no longer can use them.) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Hurray Donna! You said what I hesitated to say because I wasn't up to people jumping all over me! But I sent Mark a private e mail to tell him I agreed with him! I think there is a difference between the panhandlers at the airport who want to sell you pencils because they are deaf, and someone like Mark who is fighting his way thru college and try ing to have a career. You know me, Donna, and I like to think I am an optimist. But I have always said I preferred quality over quantity. My kids are raised, I have no husband, and I don't want " quantity " that makes me dependent on loved ones, and that sure looks like where I'm at! Count me in with Fred and Mark. Marie RE: WHAT is going on? >Crew, > If there's anyone on her who has never been down in the dumps over NF2 and >what it puts you/your loved ones through, raise your hand. I'm not >suggesting that we should all go around like Winnie the Pooh's Eeyore (is >that spelled right?) but don't we need to recognize that occasionally someone >will need to express the frustration and the absolute depression that NF2 can >cause? Maybe I didn't see the Crew rule that said we had to be Little >Sunshine all the time. > Today, Fred was in the exact same place Mark seems to have been in for the >last couple of days. NF2 is hard and is depressing and is a struggle. If >all the fighting it would make it better, then I can't think of anyone here >who wouldn't step into the ring. But sometimes it feels like you fight and >fight and you're getting worn out while the other team brings in fresh >players and you don't have a replacement. What's wrong with saying that? If >we can't express our frustration here, where can we express it? > People jump up and down over notes like Mark's. I wonder why. > Every time we lose another Crew member to NF2, most of the Crew shuts >down and goes underground for a week or two. > Dying is part of living. We don't like to see it that way, but we will >all get there eventually. Some sooner, some later. Maybe NF2 will be the >cause, maybe it won't. After the last breath, it won't make any difference, >will it? > Sadness is also part of living. We take turns at it. If we are only >allowed to express our happy feelings here, that is sad. To everything there >is a season. Look it up, huh? > Mark has been around for awhile. He doesn't seem to be an Eeyore type to >me. If he's hit a hard stretch, can't he come to his friends here to express >that? We all know what happens when we express those feelings to people who >are clueless about NF2. Their eyes glaze over, or they start walking on the >other side of the street because they can't even hear the word tumor without >freaking out. They can't relate and don't want to hear it. > If this makes you mad at me, well, that's life. You still have a delete >button. Last time I checked this was a support group. Let's see support in >action. An occasional expression of empathy wouldn't hurt. > > > Mark, I hope things get better for you and for Fred, and for all the >people who are feeling the way you guys are but may be afraid to express it >and even for the ones who haven't seen that day but will soon understand it. >Your honesty takes guts. Hang in there. > God Bless. > > ...Donna (Still hoping to collect hearing aids for Crew members who >need them from Crew members who no longer can use them.) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2000 Report Share Posted August 12, 2000 Hurray Donna! You said what I hesitated to say because I wasn't up to people jumping all over me! But I sent Mark a private e mail to tell him I agreed with him! I think there is a difference between the panhandlers at the airport who want to sell you pencils because they are deaf, and someone like Mark who is fighting his way thru college and try ing to have a career. You know me, Donna, and I like to think I am an optimist. But I have always said I preferred quality over quantity. My kids are raised, I have no husband, and I don't want " quantity " that makes me dependent on loved ones, and that sure looks like where I'm at! Count me in with Fred and Mark. Marie RE: WHAT is going on? >Crew, > If there's anyone on her who has never been down in the dumps over NF2 and >what it puts you/your loved ones through, raise your hand. I'm not >suggesting that we should all go around like Winnie the Pooh's Eeyore (is >that spelled right?) but don't we need to recognize that occasionally someone >will need to express the frustration and the absolute depression that NF2 can >cause? Maybe I didn't see the Crew rule that said we had to be Little >Sunshine all the time. > Today, Fred was in the exact same place Mark seems to have been in for the >last couple of days. NF2 is hard and is depressing and is a struggle. If >all the fighting it would make it better, then I can't think of anyone here >who wouldn't step into the ring. But sometimes it feels like you fight and >fight and you're getting worn out while the other team brings in fresh >players and you don't have a replacement. What's wrong with saying that? If >we can't express our frustration here, where can we express it? > People jump up and down over notes like Mark's. I wonder why. > Every time we lose another Crew member to NF2, most of the Crew shuts >down and goes underground for a week or two. > Dying is part of living. We don't like to see it that way, but we will >all get there eventually. Some sooner, some later. Maybe NF2 will be the >cause, maybe it won't. After the last breath, it won't make any difference, >will it? > Sadness is also part of living. We take turns at it. If we are only >allowed to express our happy feelings here, that is sad. To everything there >is a season. Look it up, huh? > Mark has been around for awhile. He doesn't seem to be an Eeyore type to >me. If he's hit a hard stretch, can't he come to his friends here to express >that? We all know what happens when we express those feelings to people who >are clueless about NF2. Their eyes glaze over, or they start walking on the >other side of the street because they can't even hear the word tumor without >freaking out. They can't relate and don't want to hear it. > If this makes you mad at me, well, that's life. You still have a delete >button. Last time I checked this was a support group. Let's see support in >action. An occasional expression of empathy wouldn't hurt. > > > Mark, I hope things get better for you and for Fred, and for all the >people who are feeling the way you guys are but may be afraid to express it >and even for the ones who haven't seen that day but will soon understand it. >Your honesty takes guts. Hang in there. > God Bless. > > ...Donna (Still hoping to collect hearing aids for Crew members who >need them from Crew members who no longer can use them.) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 BRAVO Marcus!!! Thats the best explanation of " life to the fullest " that I have heard yet!!!! Missy Re: WHAT is going on? >mark wrote: >So for the people with the advice of " living life to the fullest " , define >that for me please? > >OK as follows >It means we do the best we can with what ever we have at that time. > >It means we want to enjoy what we have while we have it. > >It means we don't want to be remembered as whiners. > >For my own kids, I want them to learn by example. > >I want them to know that life is tough regardless of NF. > >I want them to know that no matter how tough life became for me I never gave >up. > >Mark I was nasty to you and that was wrong of me, also may have breached >crew rules. >'Stand Tall' Mark, don't wallow in what may have been. > > RE: WHAT is going on? > > >> Very well put . So let me admit the obvious, living with NF2 made me >a >> cynical about being an optimist. Sure I could put on a smile and a happy, >> optimistic little face and say, " gee, it sure isn't that bad " but is it? >> " Closure " to me also is not having to live with " uncertainty " . I'll give >you >> an example that best suits me, I was/am ready and willing to accept that >NF2 >> would take away my hearing so I learned Signed, worked on my lip reading, >> and bought all the assistive devices for the deaf so I was finding > " closure " >> with deafness. BUT, I wasn't expecting NF2 to take away my balance as >well. >> Which meant I couldn't do certain activities without worrying about >falling >> and breaking my neck or cracking my head open. I wasn't expecting NF2 to >> produce tumors anywhere along my brain or spinal cord. So pardon me for >> being a little pessimistic because everytime there's a calm, a storm >> approaches. >> >> So for the people with the advice of " living life to the fullest " , define >> that for me please? >> >> >> ----Original Message Follows---- >> >> >> >> If I started the " no closure " posts going on let me just say I am not >dieing >> nor do I feel like I will die from this. In fact i consider myself >healthier >> than most non nf people I know (I'm serious)I just meant " it sucks that we >> can't get rid of it and will have to live our lives with the >uncertainty -- >> and pray it is not too unmerciful with whatever path nf2 takes. Even >though >> no one is guaranteed good health, our odds are not quiet as good as a non >> nf2 person. " >> >> >> >> >> ________________________________________________________________________ >> 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...
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