shame on all of us

[luke]

Under "its a small world scenario" one of my employees in Virginia has a grandson that has recently been diagnosed with CF. I recieved an e-mail today from the manager at that location letting me know she could really use some support. He was wanting info on a good CF center and actually wanted to know a good forum she could join for support. Ironically enough he actually made mention that he wanted to find her one that was friendly because many message boards can really scare new families. I gave her a call and tried to ease her mind, apprehensively I served up our site for support. I was quick to break down the "rules" for parents of children with CF, never go into the adult site, only go to the family section, etc....Here I am telling a petrified grandmother of a "sick" 18 month old child she can use our site for support so long as she dosen't stray out of "her area". Is that really what we are going for in our honesty?




luke

 

[Faust]

You know the answer to this. It's not an honesty thing. Tell her to also ask a certain person if she can have certain opinions, so she isn't told to leave or threatened in other ways. BTW, it's really hard to move the mouse cursor with a high DPI mouse while doing the vest.


I fully see your point with this, and while I agree with you in some ways, I also feel that (and this site might not be the best example for this discussion), there are many many many places on the internet not appropriate for a grandson or a grandmother. If she is not comfortable with many different opinions amongst a group of terminally ill adults, some of those opinions and attitudes hinge strongly on how bad of a day they are having, or if their brain is being inundated with pregnancy hormones, they need to take those things into consideration. Having ONE place on here where we are free to discuss things how we please (like adults are allowed to do), and deal with the positives and negatives of that, is a good thing. Unlike how some might feel, noone is immediately beating other newbies with sticks when they show up. We are nice, but we are realistic also.

/end of opinion

 

[Allie]

Please let the venom drop. WE know how you feel, Luke, but it's time to put it behind us. I am asking you, with respect, and pleading with you, let the hate that is separating this board stop. Let this go. Free yourself from it. I know it's hard, but just let things be as they are. Some of us will always be different from you, and that is okay, and I think the families section is great for a newbie, and I am glad you pointed her there. It is hard to always be positive dealing with a terminal illness. PLease, let this go. It's my one request of you.

 

[Emily65Roses]

I didn't say anything about people SHOULD stick to a certain area. I said it might benefit them. Beneficial to them. Good stuff like that.

As for the scared grandmother, that's sad, and needs to be addressed. She will find support somewhere, I'm sure, whether it be here or elsewhere. But keep in mind... one grandmother, one parent, one spouse, one sibling, one CFer, are not the only people on the planet.

This many people in one place, disagreements (including those with strong emotion) are <i>going</i> to come out. Whether I'm here or not, disagreements will still come out of the woodworks. No matter what you do, this many people in one place, there will be disagreements. Period, the end. And there's really nothing anyone can do to change that.

 

[JazzysMom]

IMHO I believe when people come to a forum that they forget its still the world wide web. Very often (myself included) I tend to not remember that anyone, anywhere can come on here. If we forget that & go into something (this forum or other sites) thinking its a safe little haven that we are use to & want that it can be a rude awakening. I am not saying that people shouldnt feel safe & uninhibited. What I am saying is just as much as we should try & remember what its like to start out in the world of CF, those same people need to remember its not the local community hall where things are "normal". It reminds me of people just being responsible & informed of whats out there. Just like you are advised not to take everything you read to heart. I try very hard not to scare any newby without being unrealistic. I dont think anyone here ever wants to intentionally hurt or scare someone that is just learning. Our approaches might be different, but the goal is still the same!

 

[julie]

Can't people just refrain from the smart a*s comments/jokes when the time is clearly not appropriate (this isn't directed only at you Sean)? Can't we just help the new mothers and fathers, and grandparents and CFers? I don't think there's a problem with doing whatever in a thread that YOU start, but there is a line to be drawn when someone else asks a question and people "run their numbers" so to speak. There's got to be a clear understanding of when it's ok and when it's not. And if it's NOT your post, or someone you know closley, it's NOT appropriate. Nobody is the behavior moderator, nobody is the Queen/King Bee. It's just common sense and it isn't being used very well on this site-in MY opinion.

I've moved on today from what I said yesterday, as have a number of others, but I think it's sad that what Luke is talking about is so true of this site lately.

I can't tell you how many emails and PM's I get everyday, (and please, I know what you are going to say, people should speak for themselves but they are SCARED OF HOW THEY ARE GOING TO BE TREATED on this site) from people, some new, some old, some older about what is going on. People are leaving/want to leave. And I KNOW, some of you don't care. But I do and so do a number of others. And out of respect for them wanting confidentiality, I will not post names or comments here. But I wish people could just listen for a moment and think, maybe we could tone it down a bit when responding to OTHERS.

And Sean, for clairification, what I posted yesterday had nothing to do with pregnancy hormones and nothing to do with not liking someone. It had to do with what I was feeling (which I am entitled, as are you) and the need I felt to finally say something about it.

There is such a double standard on this board it's amazing. People say if you can't handle harshness, brutality, the truth.... maybe you don't belong here. But then when somebody is honest and truthful about something, you make them wrong for what they say. and I'm not speaking only of what occured yesterday, this is part of what I see going on everyday and what I people contact me about everyday.

I've started referring people to complain to Bill, because aside from me speaking up and saying something, there is nothing I can do. But can't you just stop for a moment and consider how most of your posts to others make them feel?

There is nothing wrong with being realistic. But lets try to address the persons questions instead of dumping CF 101 on them immediately. Give people a chance to breathe, they'll come around with more questions, or hop on other posts and start exploring. But it's not happening right now because people are so scared.

 

[thelizardqueen]

Just like any other place on the internet, there will always be a difference of opinion. We haven't told anyone to "stick" to certain areas of the forum, we are simply saying that if there are certain things you don't want to hear, you might feel better posing your question in a different section that is more geared to that area, such as a parent with a question about their child, might find a better response from other parents, instead of some old CFers. Its only a suggestion, I'm not telling anyone to stay away from any other area of this forum. Post a thread where you feel comfortable. We've all got to stop this fighting and hating. We all just have to realize and DEAL with the fact that we all will not always get along, we all will have different opinions. Some opinions you may not want to hear, but non the less they are opinions. I do have to agree with Allie, that the family section is great for testing the waters. Read the adult forums before you post your question just to get a feel of how people are like in that section. I'm just tried of all the bickering, and the repeatativeness of bringing it up. We just need to let it go, and care on.

 

[Allie]

I restate my comment for EVERYONE, whether you are more like me, or like luke, or more extreme than either of us. I am extending the olive branch to everyone. Let us all be bigger people then we have been. We are all fighting the same thing, in our own way, and let us band together, we are falling apart! If I have learned nothing from Cf, it is that life is short, and you never know what it will throw. Please, everyone, let the hate go. Be free from it. I am pleading for peace.

Yes, shame on us, all of us, for the hate we have shown each other, all of us are guilty of it.

 

[julie]

Allie, I'm willing to move on, as others have been too, even conversing today. I don't hold grudges, I said what I needed to yesterday but wanted to say in general, to everyone (myself included) we've all got to be a little more careful about how we say things in respose to others postings/questions.

Just as you are begging, I am asking others to remember WHY we are here when we respond to posts. You want to start your own silly one, OK, You want to start your own thread to vent, bi*ch, complain...go for it and nobody should have a problem with it. But if you are going to respond to others, make sure you are doing it to help them.

 

[LisaV]

Sounds like a good idea.
Also, if you have a problem with someone's post (emotional problem with that person's tone or such) best to privately PM them rather than criticize in the thread. The comments on how someone is saying something takes away from the content.

[Note to self: must follow my own advice.]

 

[Faust]

Julie both your opinion and ours is VERY well known by this point, considering both angles have been thoroughly beaten into a bloody pulp of a dead horse through atleast three threads now, and countless blog comments and private conversations. We get it, you get it. Things won't change in the avenue of differing opinions and how all individuals use their words when discussing things. It's a beautiful thing, it's called a message forum that thankfully, is only loosely moderated for content (which I am very thankful for to our admin and bill). We need a place to fully exchange all opinions and states of mind. Some might feel a comment wasn't necessary, and others will. There doesn't need to be, nor should there be anyone running around who feels their way/perspective is the RIGHT way.


And those comments I made were not sarcastic in nature, they were my feelings that were directly extracted from the previous threads on going banter between both sides. I personally feel the perspective I and others share would be more viewed as the logical rational way of looking at a message forum and the internet. You feel otherwise. Nothing will change that. As I said before, noone beats newbies who come here with sticks. If they are that incredibly sensitive to find a comment as benign as what allie said as a hateful attack upon them, they REALLY haven't been far on the internet. It's not up to us to feel we must treat each ADULT that comes here like they are a fragile porcelain vase. We should generally assume that each ADULT that comes here is indeed an adult, and has been around in real life atleast somewhat, and on the internet.


We can sit here and continue to split hairs all day and night, both sides have been expressed and taken in. Both sides still feel the other side is incorrect. Nothing will change that. I can honestly only speak for myself when I say I 100% never, EVER, knowingly make venomous comments towards others unless I am attacked first. Now if you want to consider silly, sometimes sarcastic comments as venomous attacks, well, we will just have to agree to disagree on that. It's my personality, just like yours seems to be not to appreciate it. I get it, we wouldn't last long on a deserted island together like in the movie Blue Lagoon. I've known that about you since a little after I first got here, just as i'm sure you have known that about me. Life will go on, neither of us should lose sleep of it. Theres no point in continuing to illustrate our differences any longer. The reason I made the comments in the first post here, is because it appeared one side of the post was only highlighting how bad one side of the factions were, and not the other.

 

[NoExcuses]

Give me a break.

This isn't a pretty disease, so discussion isn't going to be pretty.

If someone can't handle it, don't go on the site.

The reverse isn't for me, or anyone else, to "lighten up" our posts so that someone else can come on here.

Am I taking crazy pills?

 

[julie]

Sean, this is what I am talking about the double standard. You wish to remind me that my opinion and yours is very well known at this point... beaten to a bloody pulp and seem to infer that we should stop discussing it... but it's ok for you to post your opinion one last time. That's the double standard that I am talking about.

I haven't told anyone else to stop talking about it, I just keep letting that post roll on and on, who am I to tell people they can't have an opinion when I openly asked "are there any more questions or comments". Especially if I am sharing mine. But you lay before us, all the time, a double standard.

I'll talk about it until I'm good and through thank you very much. And you and everyone else can do the same. And I posted this above, I've moved on, posted and made myself useful to this board today, as many others have too. But Luke's post gave me one more opportunity to post, maybe in a more appropriate mannor, a reminder for MYSELF and others.

And things can change just a bit sometimes, you undermine the capability of people. Already I see some minor changes, more civility, discussions but no personal attacks...

And I think what LisaV said is a good idea, from now on, I'll be heeding her suggestion because although I intended to create awareness of a problem that I and others felt, the outcome was not something I had hoped for. And I too agree that I must follow my own advice too. Can you be so humble as to admit that you ought to follow yours?

 

[Emily65Roses]

Just because people have seemed to look this over no matter how many times I've said it, I'm going to repeat myself one more time before I step back:

<b>I don't have a problem with honesty. I've said that, I mean that. What I had a problem with was Julie's "I own the world and I'm going to tell everyone what they should do like I'm forum monitor" attitude. There is a difference there, whether or not you people think so.</b>

Now, be as stupid or petty as you like. Pretend to read my post, but skip over the parts that shoot your points to hell. Do whatever you want, I'm done with all this crap. If the rest of you keep going, it just speaks volumes about you. You want us to stop, but you all keep going. Yeah. Productive.

 

[JazzysMom]

I have refrained from all the other threads that ended up like this in the past 48 hours........no one is going to be the better person by getting the last word in. Neither sides will get any farther ahead. It went from funny to sad to ridiculous! Thats all I have to say about that!

 

[thelizardqueen]

Good grief is all I have to say.

 

[Faust]

No julie it's not. Luke was doing the "shame on us all" thing, highlighting only his point on why this is such a bad place for newbies because of how bad we act towards them. He agress with you in your stance. I felt it was only fair to mention the other side of the coin, to those who would stumble in here and read and immediate agree with a one sided perspective. It wasn't a jab just for jabs sake. The other side of the coin wasn't mentioned, as best as my extremely fast vibrating vision could detect. If I wanted to whip out the verbal barb gun, I could have, and it would have been rough like my last long reply in the other thread. I am sincere when I say let us drop it, but I feel both sides should be illustrated when thinking about this issue, and not just the one that one person makes that agrees with their side. I gave you plenty of credit in my reply with regards to everything else besides a barb.

 

[luke]

Not trying to argue...just stating a very true example of the effect we have might have on others. I think this forum has many great aspects I just feel we have gotten away from the one that is most important, supporting others in the same boat as us.

And yes "we" includes me.


luke

 

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luke</b></i>

Not trying to argue...just stating a very true example of the effect we have might have on others. I think this forum has many great aspects I just feel we have gotten away from the one that is most important, supporting others in the same boat as us.



And yes "we" includes me.





luke</end quote></div>


I agree support is very important, I think we still do that on a daily basis. Look how often someone will say "Ya know my PFT's have just dropped 20%", or even me mentioning I have to have a cat scan and could have brain cancer. Support is here in droves. It's the perspective of others that is different, and support is offered in different ways than the simple "I wish you the best, I hope you get better" type of support. I have offered support countless times in the form of information regarding oregano oil and other essential oils and what I know about some supplements, and tons of direct health related opinions. Quite a few people due to the things I have told them, have a better life CF wise now. I'm just trying to illustrate in that vein, I have paid for myself in droves.

If someone feels that "support" only exists in the form of the typical "Ouch that sucks, I wish you the best, you are in my prayers", and not in say playfull silly comments that make others laugh (and i'm not refering just to myself, there are quite a few others on here who do it as well and make me laugh quite a bit), or other ways in which you communicate with others and have a digital social structure, well there isn't anything else I can say but I disagree.


Remember guys, we will disagree strongly, and often if we deviate from the "Ouch that sucks, I wish you the best" responses. Do we want this forum to be a place where there are only 3 possible responses in a form letter format? I know I personally don't. To me, all comments are welcome as long as you aren't posting not work safe or extremely offensive things like porn or dead baby pics or other universally understood no-no's. You can beat on me with sticks, and depending on my mood and what I have got to do, I might beat back, and beat back severely, regardless if you are anon or not. Unless i'm attacked, the worst thing you are going to get out of me is a silly comment.

By all means, if you can't stand me, please ignore me. I'd rather someone not struggle with such an extreme horrible quandry like how not to read me say something about the three stooges.

I only had one person on ignore a long time ago, and it takes A LOT for me to ignore someone, because I feel even the biggest idiot can occasionally see a different perspective. I can be a pretty big idiot at times, i'm not immune from it, but I do atleast listen to others and swirl their point of view around in my mouth. Of course it could be totally off the wall and illogical, but I will still swirl it.

 

[Lilith]

OMFG, people, drop this already! This is the third thread about the same old song and dance! We've all said what we needed to say, have we not!? This is bordering on total retardation, here! Why strain ourselves trying to beat a dead horse? Look, as I've said time and time again...people will say what they want, and they'll always have a different opinion. People stick to their ways. Hell, some people don't even change for their spouses, let alone a forum! Why do some people on here expect them to?!

I think that's part of the problem. People today (me included) need to learn to just let things roll off their shoulders. No one's difference of opinion directly effects anyone else, so why let it get to you?

If newbies are afraid to join, I'm sure this repetative bickering is contributing to their hesitation. Let it go, drop it. Its dead. End of story.

And so I don't sound hypocritical, this will be the last post I make reguarding anything having to do with the past few days. This whole thing is so stupid...