I'm No Scrooge, But Here's What Irks Me

[Emily65Roses]

Like I said before, I am the last person to try and take hope from someone. But here what really makes me angry:

When people say things like "just have hope" or "just smile, have a positive attitude" or "believe in god" and "you'll live a long time, a normal life."
I am not against having hope, or being positive. I am personally, for myself, against believing in god (in that I don't), but for others who decide it's for them, rock on!

What really infuriates me is when people seem to insinuate that when a CFer dies young (like Allie's Ry, for instance), that it's somehow their fault. Like Ry didn't fight hard enough, or wasn't positive enough, or didn't have enough hope, or didn't care enough to live for Allie or Ahava, or he was only a Jew, so he didn't believe in Jesus, and therefore died. For those of you that don't know how I feel about Allie/Ahava/Ry, that's NOT at all how I feel. I think Ry must have been frickin awesome.

But this is a question that seriously does make me wonder. Is there anyone who actually thinks any of the things I said above? Certainly hope, a positive attitude, religion, and whatever else can help you in your life... But is there anyone who actually truly believes that lack of any of those things is what killed those of us who died young??? I seriously do get that feeling from some people sometimes, and quite frankly, it makes me irate (given my belief that it is never - unless a CFer does something ridiculous like smoke a pack a day - a CFer's fault that they have died). So I'm curious.

 

[Emily65Roses]

Like I said before, I am the last person to try and take hope from someone. But here what really makes me angry:

When people say things like "just have hope" or "just smile, have a positive attitude" or "believe in god" and "you'll live a long time, a normal life."
I am not against having hope, or being positive. I am personally, for myself, against believing in god (in that I don't), but for others who decide it's for them, rock on!

What really infuriates me is when people seem to insinuate that when a CFer dies young (like Allie's Ry, for instance), that it's somehow their fault. Like Ry didn't fight hard enough, or wasn't positive enough, or didn't have enough hope, or didn't care enough to live for Allie or Ahava, or he was only a Jew, so he didn't believe in Jesus, and therefore died. For those of you that don't know how I feel about Allie/Ahava/Ry, that's NOT at all how I feel. I think Ry must have been frickin awesome.

But this is a question that seriously does make me wonder. Is there anyone who actually thinks any of the things I said above? Certainly hope, a positive attitude, religion, and whatever else can help you in your life... But is there anyone who actually truly believes that lack of any of those things is what killed those of us who died young??? I seriously do get that feeling from some people sometimes, and quite frankly, it makes me irate (given my belief that it is never - unless a CFer does something ridiculous like smoke a pack a day - a CFer's fault that they have died). So I'm curious.

 

[Allie]

You and I have talked about this before, how when Ry caught cepacia, he told me "No problem babe, people live for YEARS with it" , totally upbeat about the whole thing, dead 2.5 years later. So I don't think being happy saves you. I do believe in God, but I don't believe that saves you either. I think a lot of what saves you is luck. *shrugs* my .02

 

[Allie]

You and I have talked about this before, how when Ry caught cepacia, he told me "No problem babe, people live for YEARS with it" , totally upbeat about the whole thing, dead 2.5 years later. So I don't think being happy saves you. I do believe in God, but I don't believe that saves you either. I think a lot of what saves you is luck. *shrugs* my .02

 

[coltsfan715]

Hey Emily,
I personally believe in God, try to keep a positive attitude and think that positive thinking can help you feel better in many instances. That being said I do NOT think that just because someone doesn't believe in God or think positively that they will die young or deserve it or what have you.
If you do not agree with my next statement that is fine - I am just stating what I believe -
I think that when it is your time to go it is your time to go and nothing - no belief in God, no amount of positive thinking, no amount of wanting to stay around for the people you love or to finish X, Y or Z - will keep you from dying. I also don't think that when you die you are gone forever, I think someone's presence can still be felt, their memory still held onto and that they can still hang around and look out for you after they are gone (at least I hope that is the truth - cause I am looking forward to hanging around my family when my time comes - lol I have already told them to be prepared) That is just my opinion. I think everything happens for a reason.

I think alot of people don't know what to say (not that they have to say anything, but many people feel it is necessary) when they are in situations with people that have chronic/life threatening illnesses, and many times say things like what you mentioned thinking they are being kind/helpful/encouraging or what have you. I used to have a teacher that would tell me with my attitude and my outlook on life that I would beat CF. I always wanted to believe that, but deep down it hurt because I knew no matter how positive I think and how much I believe in God, unless there is some cure for CF that can help me I will not beat CF in the long run, some battles I can win but in the long term ya know. I know the guy was just trying to be encouraging and didn't know the gravity of what he was saying and I had to let it go.

I definitely see what you are saying though. Alot depends too on the attitude people have when saying those things. You can tell alot by that.

Lindsey

 

[coltsfan715]

Hey Emily,
I personally believe in God, try to keep a positive attitude and think that positive thinking can help you feel better in many instances. That being said I do NOT think that just because someone doesn't believe in God or think positively that they will die young or deserve it or what have you.
If you do not agree with my next statement that is fine - I am just stating what I believe -
I think that when it is your time to go it is your time to go and nothing - no belief in God, no amount of positive thinking, no amount of wanting to stay around for the people you love or to finish X, Y or Z - will keep you from dying. I also don't think that when you die you are gone forever, I think someone's presence can still be felt, their memory still held onto and that they can still hang around and look out for you after they are gone (at least I hope that is the truth - cause I am looking forward to hanging around my family when my time comes - lol I have already told them to be prepared) That is just my opinion. I think everything happens for a reason.

I think alot of people don't know what to say (not that they have to say anything, but many people feel it is necessary) when they are in situations with people that have chronic/life threatening illnesses, and many times say things like what you mentioned thinking they are being kind/helpful/encouraging or what have you. I used to have a teacher that would tell me with my attitude and my outlook on life that I would beat CF. I always wanted to believe that, but deep down it hurt because I knew no matter how positive I think and how much I believe in God, unless there is some cure for CF that can help me I will not beat CF in the long run, some battles I can win but in the long term ya know. I know the guy was just trying to be encouraging and didn't know the gravity of what he was saying and I had to let it go.

I definitely see what you are saying though. Alot depends too on the attitude people have when saying those things. You can tell alot by that.

Lindsey

 

[Faust]

It's a double edges sword really. On one hand, it's ultimately the disease you didn't ask for that of course kills you, and more importantly from that side, it's your particular mutations that have the most influence on longevity. On the other hand, even with the worst mutations, if you decide to take as good care of yourself as humanely possible and not get apathetic about the whole thing, you can live longer doing that, than not doing that. Just because you take the best care of yourself as humanely possible doesn't mean you won't "die young", because we all generally die young. But you can add heart beats to your life due to taking really good care of yourself.


For me personally, I'm agnostic, but I am fairly spiritual. To me people need religion to cope with life and keep them strong through so much crap even normal people have to deal with, yet alone terminally ill people. I view whatever helps someone get by in life as a good thing, even if I personally think something is silly.

 

[Faust]

It's a double edges sword really. On one hand, it's ultimately the disease you didn't ask for that of course kills you, and more importantly from that side, it's your particular mutations that have the most influence on longevity. On the other hand, even with the worst mutations, if you decide to take as good care of yourself as humanely possible and not get apathetic about the whole thing, you can live longer doing that, than not doing that. Just because you take the best care of yourself as humanely possible doesn't mean you won't "die young", because we all generally die young. But you can add heart beats to your life due to taking really good care of yourself.


For me personally, I'm agnostic, but I am fairly spiritual. To me people need religion to cope with life and keep them strong through so much crap even normal people have to deal with, yet alone terminally ill people. I view whatever helps someone get by in life as a good thing, even if I personally think something is silly.

 

[luke]

That is a tricky question. Do I think that positive attitude and faith plays a very important part in our disease, yes. Do I think that lack of these things cause an early death, it could. Sometimes people just get sick and no matter what there is nothing anyone can do. And others may not be "sick" but by wollowing in self pity and negativity they literally make themselves sick. I have seen patients(not CF of course) that were relatively healthy but wanted to be sick, they wanted to be in the hospital and I am certain they died years before their time because of this. Most cystics are fighters and we fight so hard to live, but sometimes there isn't anything anyone can do short of a miracle.



Luke

 

[luke]

That is a tricky question. Do I think that positive attitude and faith plays a very important part in our disease, yes. Do I think that lack of these things cause an early death, it could. Sometimes people just get sick and no matter what there is nothing anyone can do. And others may not be "sick" but by wollowing in self pity and negativity they literally make themselves sick. I have seen patients(not CF of course) that were relatively healthy but wanted to be sick, they wanted to be in the hospital and I am certain they died years before their time because of this. Most cystics are fighters and we fight so hard to live, but sometimes there isn't anything anyone can do short of a miracle.



Luke

 

[JennifersHope]

My personal belief is NO WAYYYYYYYYYYYYY.... People die young of CF cause CF is a crappy disease. period. I personally believe in God as well, but I always say I have Crappy Genes not a Crappy GOD. I feel that anyone who thinks that people die young because they don't believe in GOd are so dyfunctional in their thinking..and if GOd did that made ppl die young He would not Be the God that I know him to be.

I don't have time to write more now cause I have to leave for work 5 minutes ago...

Jennifer

 

[JennifersHope]

My personal belief is NO WAYYYYYYYYYYYYY.... People die young of CF cause CF is a crappy disease. period. I personally believe in God as well, but I always say I have Crappy Genes not a Crappy GOD. I feel that anyone who thinks that people die young because they don't believe in GOd are so dyfunctional in their thinking..and if GOd did that made ppl die young He would not Be the God that I know him to be.

I don't have time to write more now cause I have to leave for work 5 minutes ago...

Jennifer

 

[JazzysMom]

I think a healty attitude helps us plug away each day & overall it helps with our long term well being. For those with strong faith I think it helps them. I personally dont believe the strongest faith will save you when its all said & done. Like Jenn said having sucky genes kills you not a sucky God (or lack of). On that note tho, there are people that believe (as its been discussed previously) that only the faithful live or that only those who take good care of themselves deserve to live. I see so many variations of this idea with people outside of the CF world. Many people around me died of Cancer who never smoked a day in there life & had a good faith. ON the other hand I know many people that have "defied" the odds of death even tho they continuously abused their bodies and spirits. When someone pisses me off by saying some "typical" response I TRY (doesnt always work) to chalk it up to they dont know what else to say. For example....my chats with Allie, I try not to act like I know how she feels because I dont. The closest I can associate that type of pain with is my Dad's death. I have shared stories about him and how situations with Jazmine were handled. I try not to say those typical phrases & I know there have been many times that I have actually said--"I dont know what to say". Honestly I much rather hear those words then the BS that comes so often from people. At least then I know they seem concerned, but arent sure what to actually say because there isnt anything they can to help!

 

[JazzysMom]

I think a healty attitude helps us plug away each day & overall it helps with our long term well being. For those with strong faith I think it helps them. I personally dont believe the strongest faith will save you when its all said & done. Like Jenn said having sucky genes kills you not a sucky God (or lack of). On that note tho, there are people that believe (as its been discussed previously) that only the faithful live or that only those who take good care of themselves deserve to live. I see so many variations of this idea with people outside of the CF world. Many people around me died of Cancer who never smoked a day in there life & had a good faith. ON the other hand I know many people that have "defied" the odds of death even tho they continuously abused their bodies and spirits. When someone pisses me off by saying some "typical" response I TRY (doesnt always work) to chalk it up to they dont know what else to say. For example....my chats with Allie, I try not to act like I know how she feels because I dont. The closest I can associate that type of pain with is my Dad's death. I have shared stories about him and how situations with Jazmine were handled. I try not to say those typical phrases & I know there have been many times that I have actually said--"I dont know what to say". Honestly I much rather hear those words then the BS that comes so often from people. At least then I know they seem concerned, but arent sure what to actually say because there isnt anything they can to help!

 

[anonymous]

I've thought about this stuff a lot since my husband died from sepsis secondary to MRSA & pseudomonas-colonized bronchiectasis secondary to Marfan (a genetic disorder).
It seems to me that having Marfan's or CF or any other genetic disorder is a "roll of the dice" thing.
He had no control over that. He had some control over staying as healthy as he could by being active in managing the bronchiectasis (getting rid of the mucus, taking the TOBI, exercising, avoiding obvious sources of infections, etc) and managing depression. But not total control. He didn't get colonized with the MRSA through any fault of his own, for example. He couldn't keep his mother (a real source of support to him) alive. He couldn't (and didn't want to) keep his daughter (whose smile always helped him through a day) from growing up and moving out and living alone. He couldn't win megabucks so I could stay home and play with him.

Neither of us thought we were immortal, but because I don't have anything the matter with me that's sort of actively trying to kill me, I can sort of "ignore" my mortality day by day. He had to fight for life every single day. It was him against the disease (Hopefully, he felt like he wasn't alone in that fight. that I was their by his side.) I guess every single person is sort of on a "suicide mission" - won't come out of life alive. But most people, for most of their lives, get to ignore/deny that. He never did. He fought and fought and fought for life. Clean out after cleanout. Rehab after pneumonia after rehab.

By age 59 he was exhausted from the fight. He sometimes said he'd "had enough" that he didn't know if he had another "come back" left in him. Still he kept on trying to the best of his ability and was in pulmonary rehab (though depressed as hell) when he got the sepsis that killed him.

Did he die because he was depressed and gave up fighting at the same level he had when he was 25? If he'd exercised more or moved more often to avoid the one bed sore would he be alive today? If he'd seen a better psychologist? Even person x had come to visit him and smile at him just one more time? If I had quit my job and we'd moved into public housing? If If If?
Or did the disease just finally win.

I think the disease just plain won.

So having a better attitude or fighting harder or going to church one more time couldn't have kept him alive. And when my body gets as worn out as his was, won't keep me alive either. Finally none of those things will keep any of us alive forever.

But is the fact that he fought hard for 59 years help give him the 59 years (rather than the 35 he was told by the docs when he was young were his max)? The fact that that early death sentence just plain pissed him off and made him angry ("Dead at 35? No way! I'll show you!!) Damn straight! Without fighting and without an attidude/ a point of view/ a whatever that helped him find joy in most of the days of that 59 years, he never would have made it to age 59. Never would have been around to marry wife number 2 (let alone wife number 3, me) or have kids, or teach or counsel all the folks he did, or play practical jokes on our neighbors, or.....

It's the old serenity prayer thing, I think. Accepting the things we can't change, Changing the things we can. And praying (or just plain looking if we don't pray) for the wisdom to tell the difference.

And others like to think that there's more under the control of the ill person (or under their control if they are a loved one) than is. It's a way of distancing ourselves from our own mortality. We can think "well, maybe he died young, but that because he didn't do x or y or z. Even though I have the CF (or whatever), I won't die young because I WILL or DO do x or y or z." It's a kind of "blame the victim" thing as a way of avoiding looking at the truth - which is that there is less under our control than we would like.

Still and all. I wouldn't count on dying young if you have CF. Again, remember my husband's situation. He had sort of counted on dying young (the original prognosis) and was completely pissed off when he turned 36. And then small advances made the lifespan for Marfan's go to 72. Real mid-life crisis for him at 37. And some real "pressure" to take even better care of himself and his loved ones. I mean, there's a real difference between knowing and accepting the statistics that one probably will die young and feeling that you've been "promised" that. While you're living and enjoying each and every day, some long term planning wouldn't be amiss.

Whether they find new treatments during your lifetime that will extend it is also a roll of the dice thing. Don't count on it. Don't dismiss it either.

 

[anonymous]

I've thought about this stuff a lot since my husband died from sepsis secondary to MRSA & pseudomonas-colonized bronchiectasis secondary to Marfan (a genetic disorder).
It seems to me that having Marfan's or CF or any other genetic disorder is a "roll of the dice" thing.
He had no control over that. He had some control over staying as healthy as he could by being active in managing the bronchiectasis (getting rid of the mucus, taking the TOBI, exercising, avoiding obvious sources of infections, etc) and managing depression. But not total control. He didn't get colonized with the MRSA through any fault of his own, for example. He couldn't keep his mother (a real source of support to him) alive. He couldn't (and didn't want to) keep his daughter (whose smile always helped him through a day) from growing up and moving out and living alone. He couldn't win megabucks so I could stay home and play with him.

Neither of us thought we were immortal, but because I don't have anything the matter with me that's sort of actively trying to kill me, I can sort of "ignore" my mortality day by day. He had to fight for life every single day. It was him against the disease (Hopefully, he felt like he wasn't alone in that fight. that I was their by his side.) I guess every single person is sort of on a "suicide mission" - won't come out of life alive. But most people, for most of their lives, get to ignore/deny that. He never did. He fought and fought and fought for life. Clean out after cleanout. Rehab after pneumonia after rehab.

By age 59 he was exhausted from the fight. He sometimes said he'd "had enough" that he didn't know if he had another "come back" left in him. Still he kept on trying to the best of his ability and was in pulmonary rehab (though depressed as hell) when he got the sepsis that killed him.

Did he die because he was depressed and gave up fighting at the same level he had when he was 25? If he'd exercised more or moved more often to avoid the one bed sore would he be alive today? If he'd seen a better psychologist? Even person x had come to visit him and smile at him just one more time? If I had quit my job and we'd moved into public housing? If If If?
Or did the disease just finally win.

I think the disease just plain won.

So having a better attitude or fighting harder or going to church one more time couldn't have kept him alive. And when my body gets as worn out as his was, won't keep me alive either. Finally none of those things will keep any of us alive forever.

But is the fact that he fought hard for 59 years help give him the 59 years (rather than the 35 he was told by the docs when he was young were his max)? The fact that that early death sentence just plain pissed him off and made him angry ("Dead at 35? No way! I'll show you!!) Damn straight! Without fighting and without an attidude/ a point of view/ a whatever that helped him find joy in most of the days of that 59 years, he never would have made it to age 59. Never would have been around to marry wife number 2 (let alone wife number 3, me) or have kids, or teach or counsel all the folks he did, or play practical jokes on our neighbors, or.....

It's the old serenity prayer thing, I think. Accepting the things we can't change, Changing the things we can. And praying (or just plain looking if we don't pray) for the wisdom to tell the difference.

And others like to think that there's more under the control of the ill person (or under their control if they are a loved one) than is. It's a way of distancing ourselves from our own mortality. We can think "well, maybe he died young, but that because he didn't do x or y or z. Even though I have the CF (or whatever), I won't die young because I WILL or DO do x or y or z." It's a kind of "blame the victim" thing as a way of avoiding looking at the truth - which is that there is less under our control than we would like.

Still and all. I wouldn't count on dying young if you have CF. Again, remember my husband's situation. He had sort of counted on dying young (the original prognosis) and was completely pissed off when he turned 36. And then small advances made the lifespan for Marfan's go to 72. Real mid-life crisis for him at 37. And some real "pressure" to take even better care of himself and his loved ones. I mean, there's a real difference between knowing and accepting the statistics that one probably will die young and feeling that you've been "promised" that. While you're living and enjoying each and every day, some long term planning wouldn't be amiss.

Whether they find new treatments during your lifetime that will extend it is also a roll of the dice thing. Don't count on it. Don't dismiss it either.

 

[anonymous]

Well, in rereading what I wrote I'm thinking that those of you who didn't know my husband at 35 might wonder about the seeming contradiction of saying "no way will I die at 35" and being pissed off when he made 36.

The short (semigraceful) answer to that question is the advice he once gave to someone else who was diagnosed with a progressive illness when that person was thinking of marrying.
"Don't marry anyone you don't want to grow old with. You just might find out you're going to be old."

And that is all I'm going to say about his first wife and marriage.
which is probably too much as it is....
-LisaV

 

[anonymous]

Well, in rereading what I wrote I'm thinking that those of you who didn't know my husband at 35 might wonder about the seeming contradiction of saying "no way will I die at 35" and being pissed off when he made 36.

The short (semigraceful) answer to that question is the advice he once gave to someone else who was diagnosed with a progressive illness when that person was thinking of marrying.
"Don't marry anyone you don't want to grow old with. You just might find out you're going to be old."

And that is all I'm going to say about his first wife and marriage.
which is probably too much as it is....
-LisaV

 

[anonymous]

<img src="i/expressions/oxygen.gif" border="0"> Hiya, I've just joined today so I'm new! I've been loggin in anonymously for a few months now but haven't taken the plunge to join. So I did today, and here I am! I find all your messages so uplifting! My name is Charlotte and I live in Wales. I have two daughters, the eldest is 4 yrs old and the youngest is 2 yrs. My youngest daughter has CF and was diagnosed at 6 weeks. So I am very new to all this as you can imagine!

 

[anonymous]

<img src="i/expressions/oxygen.gif" border="0"> Hiya, I've just joined today so I'm new! I've been loggin in anonymously for a few months now but haven't taken the plunge to join. So I did today, and here I am! I find all your messages so uplifting! My name is Charlotte and I live in Wales. I have two daughters, the eldest is 4 yrs old and the youngest is 2 yrs. My youngest daughter has CF and was diagnosed at 6 weeks. So I am very new to all this as you can imagine!