Can someone give me some reasons

[WinAce]

<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
you ever seen that one skit they do on saturday night live called "debbie downer"? you remind me of her. <hr></blockquote>

How so? Acknowledging all the trials we face isn't being unnecessarily pessimistic; it's being realistic. Comparing your average CF patient's life to that of a rock star is, IMO, just condescending. (Not least because if the latter have a shorter lifespan, it's most often due to recklessness, not the luck of the genetic die.)

I view the idea that people with CF enjoy life more, or are somehow more appreciative, largely as an expression of sour grapes. Those people "running to and fro without ever looking to the sky" are busy doing what's necessary, just as we aren't necessarily that appreciative-looking while doing the 50,000th Vest treatment necessary just to keep from dying. When they're not busy, they can play with their puppies, read bedtime stories to their kids, and so on with the same delight as any of us.

Personally, I'd <i>much</i> rather miss an opportunity because I was too busy living it up in other areas to notice it, than because I wasn't able to breathe deeply enough to seize it by the throat. There is not a single redeeming aspect to this disease; not ONE. I view it this way: If you're a strong enough individual that <i>even CF</i> can't kill your spirit, imagine what heights you could reach without it!

As for the original poster,

Sigh, I feel your pain. Especially the part about the good days being the only times when you can really appreciate life, and sadness at their being fewer and more sporadic. I've been there, and it's gonna get to you to the point where you're suicidal--in an entirely rational fashion--if nothing changes; I recognized I was rapidly getting there, and was fortunate enough to have changed my life enough that it's no longer an issue. I sincerely wish you do the same. In my case, it was love; in yours, I'm not sure what it might be, but you really need it!

 

[cheynne]

I never stated that we shouldn't acknowledge our condition, and what is involved in preserving our health. I just think you guys have your lifestyle all wrong. I have gone through this website and, frankly, found the majority of people to be waiting to die. My point was just that we should go out and live life to the full. However, if this is a concept too hard to comprehend, perhaps you should continue to complain about the calamities in our lives, and we will see who lives the fuller life. And besides, what is wrong with trying to glorify our disease? After reading these posts, had I not lived the way I have, I would be ready to call it a day.

What you have to realize is that 'living life to the full' is not specific to those with the milder cases of the disease either. I've seen a beautiful picture of a child strapped into a wheel chair, with oxygen tubes protruding from his nose - but he was grinning proudly with several trout around his feet. That is how we should live our lives.

If you have a different life philosophy, or don't think we should grab unique opportunities offered to diseased folk, I would love to hear why.

<a target=new class=ftalternatingbarlinklarge href="http://www.cflivin.com/stories/cheynne/IMG_0157.JPG">http://www.cflivin.com/stories/cheynne/IMG_0157.JPG</a>

and, in my humble opinion, if you honestly believe that getting out and enjoying opportunities should be replaced by everday mundane activites (by principal), then your disease has already affected your decision-making or 'spirit', as any normal person would grab these opportunities by the balls, disregarding whatever they should be doing that day (ie, work).

I'm gonna go do something fun now.

 

[Mockingbird]

ha ha, you have to admit WinAce, you <i>are</i> quite negative. =-) I wouldn't go as far as debbie downer, though.

As for the redeeming qualities of CF, it does give us a different perspective on life. I'd say that's a redeeming quality. I'm not talking about your sour grapes, I'm talking about any different perspective.

"If you're a strong enough individual that even CF can't kill your spirit, imagine what heights you could reach without it!"

I say, if the person didn't have CF in the first place, he wouldn't have had anything to make his spirit that strong in the first place. =-) That's the point I'm getting at.

 

[anonymous]

<blockquote>Quote<br><hr>Those people "running to and fro without ever looking to the sky" are busy doing what's necessary<hr></blockquote>

many are doing what is necessary to make a lot of money, a lot of money is not necessary in my book. if i can work a few less hours a week and make a little less money so that i can enjoy more time with friends and family or myself then i will certainly take that option. our society, especially here in newport beach, is based on the accumulation of objects and money for the most part and it's sad.

 

[anonymous]

^^
s

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>cheynne</b></i><br>we should grab unique opportunities offered to diseased folk...and, in my humble opinion, if you honestly believe that getting out and enjoying opportunities should be replaced by everday mundane activites (by principal), then your disease has already affected your decision-making or 'spirit', as any normal person would grab these opportunities by the balls, disregarding whatever they should be doing that day (ie, work). I'm gonna go do something fun now.<hr></blockquote>

You disparage workaday people for leading "mediocre" lives, yet you're happy to live off of their labors. Doesn't this strike you as a bit hypocritical? I'm glad you've found others who are willing perform mundane activities so you can have fun. Still, this is just the kind of attitude that screws it up for the rest of us -- that makes people suspect we are exploiting "victim status" when in fact we're just trying to get by. "Lifestyle all wrong"? Shame on you!

To S: I'm not into the accumulation of money and objects (unless you count books and records), but I'm not prepared to say it's "sad" in itself. I assume, in fact, it makes some people happy. At least they seem to be enjoying themselves. More power to 'em.

To Ace, on sour grapes: A thousand times yes!

Q

 

[cheynne]

You misunderstood my post.

I merely stated that there are better ways to spend time than the traditional, monotonous routine that the world follows. Our disease (at least in my case) has allowed us to truly see what is important. Happiness. However this is achieved is up to you - I was stating that just because we have a disease does not mean we should allow ourselves to sit back and rot. We should try and overcome our problems as best we can, to do as much as we can. Get out and live life - don't sit back and complain about what we cannot achieve. Instead, think of what you can.

I'm still rather surprised anyone is disputing what I'm saying. It's not particularly controversial or anything - concentrate a full life (or more) into the time you are here for.

I've also never stated that I do not work - nor that I leech off others success. I simply grasp everything that comes my way. Why should I refuse something offered to me? If anything, inactivity is more of a crime.

My original post was made with good intentions. I had not expected such a negative response, and will refrain from commenting hereforth. Or is my nagging suspicion correct that whatever is stated, this board manages to turn it into something ugly or sad?

 

[JazzysMom]

What makes me happy? Well dancing is a big thing especially with my daughter. The problem.....I cant do it like I use to. Do I sit & dwell on that or do I sit & rot letting my life slip past.....no. I make alternative plans such as singing so loud that the neighbors can hear me. I dont put my life on hold because I cant enjoy things in the same manner I use to. I personally am not one to go out & grab the world by the balls. Not because I cant due to Cf, but because that is not what I need. I am happy with my home, family & friends. I much rather entertain a few people over a b-b-q & play uno than climb Mount Everest or go scuba diving. If I was offered the chance to do those things I probably would, but I dont feel the need to seek them out myself. I have had a very fullfilling life so far. I have met & grew up with famous people, traveled to my preferred destinations (although Italy is still in the works), lived, loved & laughed. I am very family oriented & come from a large family. We werent poor, but we were far from rich in the monetary sense. We were taught to enjoy life with what you have. I teach my daughter the same. She gets as much out of a free, simple walk through the woods & seeing the wildlife up close as someone else does skiing down the Alps. Do I have bad days that I dont give a damn about things.....yes. Is it because of CF....maybe or maybe I just woke up on the wrong side of the bed. I try not to let it keep me down. If nothing else I have learned from my own experience as well as close friends/family that life is too short for everyone. Not just those with CF. I would prefer quality life or quantity, but everyone's quality is different I guess!

 

[WinAce]

<blockquote>Quote
<hr>I say, if the person didn't have CF in the first place, he wouldn't have had anything to make his spirit that strong in the first place. =-) That's the point I'm getting at.<hr></blockquote>

What evidence do you have that this is the case? Plenty of people who haven't been chronically ill their entire life are strong to survive an illness, when it suddenly hits. Conversely, plenty of CF patients are <i>anything</i> but strong spirits (we just don't hear about them much, because they retreat to the fetal position and die).

CF rumbles along and mows down everyone who isn't strong (or strong enough to adapt, at least) already; it doesn't suddenly make the strong out of the weak.

Everyone follows a monotonous routine, in some ways. Just because the healthy person's will often differ from yours is little reason to condemn theirs, or think of yours as especially worthwhile. Bet you dollars to cents very few of them would be willing to accept your "special" view on life (with the needle pricks, PICC lines, getting short of breath from walking a block out of the car, etc.) in lieu of their own, while most CF patients <i>dream</i> of having theirs. And everyone, except the truly pathetic (and then, only by most people's view--your life is ultimately up to you alone) has things they enjoy, whether it be family or pets or video games or stamp collecting.

That some patients are able to smile while permanently chained to an oxygen tank is not an argument for oxygen tanks being worthwhile--it just shows they're courageous people.

 

[cheynne]

I know I wasn't gonna post again..but damn.

Firstly, I never said CF had a better lifestyle. I know no healthy person would trade places with me. I stated that the PERSPECTIVE which is derived from the disease is BETTER than that of the average healthy persons, which can allow us to concentrate our lives into a series of immense highs and lows as we jump from hospital to holiday to hospital again. It also allows us to receive WONDERFUL opportunities, which many people envy. This makes our lives worth living.

Also, I have really tried to be patient about this, but when you consider the original purpose of this topic, I can't help but feel you are a complete moron. Julie was trying to find some encouragement, and you have successfully managed to either reduce or eliminate the good of many people's inspiration posts. Whether our views are correct is irrelevant, they could have helped her. You have just revealed what a pseudo intellectual you are - If you had anything between your ears, you would have held off your incredibly negative views, or placed them in a different thread (which could have been entitled something appropriate like 'Life Sucks'). You really don't think very far - this topic started because someone was depressed, and all I and few others did, was try and encourage her. So far, you have said nothing positive at all. Congratulations, you have successfully reinforced all of her concerns about Cystic Fibrosis life.

And, by the way, do you really believe someone who moans about the effects of the disease is stronger than someone who tries to shrug them off and live life to the full? Those people who died (as all of us inevitabley do) should never be called weak. Have some respect, man. For all we know they could have had a mutation far stronger than mine or yours, and in fact had a far stronger spirit than any of us here. It's always good to think before you post. Fortunately they invented the edit button for people like you.

<blockquote>Quote
<hr>plenty of CF patients are anything but strong spirits (we just don't hear about them much, because they retreat to the fetal position and die). <hr></blockquote>

How would you feel if people said that about you when you're dead?

 

[WinAce]

You can repeat it 5, 10 or a hundred times, but that won't change that the perspective you speak of isn't "derived" from CF in any meaningful way. Plenty of those without CF (or any chronic illness) have it, and from my experience, only a minority of CF patients have it, too. At most, you hear about it more in the cases of CF because it's more inspirational coming from someone persevering despite a disease that horrible.

If you need to resort to pathetic out-of-context misquoting to demonize me, you may as well just bow out of this topic, yourself. I never implied those that die from CF are weak--just that those who <i>are</i> weak will, when confronted with CF, disproportionately die. It's not a disease that you will survive with unless you're one of the stronger people, in the first place. And if you don't read that quote of mine divorced from the surrounding paragraphs (as you've dishonestly presented it), that is PAINFULLY obvious.

You may want to read over the topic before accusing me of taking it off-course. You're the one who personally attacked me, suggested that people should disregard "whatever they should be doing that day (ie, work)," in favor of fun (reinforcing harmful stereotypes about those who can't work, as someone aptly pointed out), and <b>actually asked those "who have a different life philosophy," or who had any additional comments, to expand on their reasoning.</b> So cry yourself a river if you've now decided those are no longer welcome; this isn't your topic, after all.

You may want to calm down, yourself, and leave the original poster to decide what course their topic will take. I'm sure they're more than capable of a (politely) asking me not to comment, should they be uninterested.

Finally, in my view, those who neither let this disease unduly detract from their enjoyment of life, NOR stick their head in the sand and downplay its effects, implying others shouldn't "moan" about them, ARE stronger (or at least, more honest about it all).

 

[Mockingbird]

<blockquote>Quote
<hr><i>Originally posted by: <b>WinAce</b></i>
<blockquote>Quote

<hr>I say, if the person didn't have CF in the first place, he wouldn't have had anything to make his spirit that strong in the first place. =-) That's the point I'm getting at.<hr></blockquote>

What evidence do you have that this is the case? <hr></blockquote>

Oh, for goodness sakes. Fine, whatever. you think people are born strong, obviously. I beleive people grow into it.

You know, it really doesn't hurt to consider a different point of view every once in a while, instead of automaticallly demanding evidence. What the hell kind of evidence am I supposed to provide? I could be like you, and spew conjecture all over the place, but that isn't really conclusive evidence, now is it? A belief is a <i>belief</i> meaning an opinon, meaning not a fact that can be proven or disproven.

 

[anonymous]

Cheynne
I found your reply to this topic really inspiring, you have a very good outlook and i did not find anything that you said to be negative. I hope that my child reaches for the stars and lives her life to the fullest despite CF and i love your quote. " I will die with CF not because of it" and i agree it does seem alot of times when someone on this board is depressed and needs positive feedback all that one gets is negative replies. Quite Depressing!!!!

Good to see one that has a good outlook on life!!!! Keep going!!!

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>cheynne</b></i><br>To take advantage of our condition, rather than have it take advantage of us...I have applied this philosophy for most of my life, and have found that many people are more than willing to give people such as ourselves a 'good time'. Our disease is debilitating - we all know it - so why shouldn't we take advantage of EVERYTHING we can, while we can? I've done some stuff that normal people have never even dreamed of doing - simply because people know that I want to live life to the full.<hr></blockquote>

I don't think I misunderstand you. And I never said you didn't work. I did suggest that it's perverse to boast that you "shine over" the very people who enable you to have such a "good time." Be honest. To say you "take advantage of (your) condition" is really to say you take advantage of others who feel sorry for you. There is, after all, no "advantage" in the condition itself. Don't fall back on the "unique perspective" line of bull. It's disingenuous. Everyone has a unique perspective, and after all that's not what you're really taking about here. What you are saying is you think CF ought to be some kind of free pass to the circus. And that shines a bad light on those of us who are careful not to take advantage of others' sympathies, as tempting as it might be, but instead are just looking for a fair shake. No, I understand quite well -- because I have to deal with the suspicions and misconceptions people like you cause.

Q

 

[Mockingbird]

Oh, come now, Cheyenne isn't talking about taking advantage of other people's sypmathy. You did misunderstand her. It's not like she's telling people she has CF so she can get a free ride.

What you're talking about, Q, is being too proud to accept anything that's offered to you. Cheyene is saying she doesn't let a bunch of useless pride get in the way of letting her enjoy a good life. All in all, she seems to be a pretty happy person to me, while you just seem to be... um bitter. =-)



Cheyenne, don't let this stuff get to you. I know from experience, even if WinAce or Q did suddenly realize the sense behind your words, they're both way too proud to admit it. I know how frustrating it is, believe me. =-)

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Mockingbird</b></i><brWhat you're talking about, Q, is being too proud to accept anything that's offered to you. Cheyene is saying she doesn't let a bunch of useless pride get in the way of letting her enjoy a good life. All in all, she seems to be a pretty happy person to me, while you just seem to be... um bitter. =-)
<hr></blockquote>

Ha! I resemble that remark! Pride, as you know Mockingbird, is a mortal sin, and I wash my hands and feet of it. But you also know that "taking advantage of EVERYTHING we can, while we can," as the poster urged, ain't exactly the golden path either. I accept many things that are offered to me, but i don't accept your false dichotomy! There's a lot of ground between stubborn pride and unapologetic opportunism. Maybe the poster is exaggerating about the latter, but it still gets my goat. If that's my bitterness talking, it's only because of the -- er, bitters. Cheers.

Q

 

[Mockingbird]

Right, i guess you're not the Q I was thinking about, then. I apologize. I think when Cheyene said taking advantage of EVERYTHING, though, I'm not sure she really meant <i>everything</i>. I don't really get that feeling, anyway.