Old 04-16-2016, 11:13 AM #1 (permalink)
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Default Needed to share

The below post is MY opinion of why we are all here and losing anyone who is kind and supporting is another loss we all suffer. May I also add that I hope to read all posts of support and not be singled out in any group.

Janelle, while I understand why you need to leave, I want you to know that it saddens me deeply for so many reasons to see one more loving and compassionate person leave because of your faith. You are compassionate, kind, loving and have always been uplifting. That faith, love and spirit should not be modified or moved to a separate post because of how you believe. I admit that I don't go to the house (fear of mod) anymore and I struggle at times with faith. I certainly believe and it does not bother me in the least that posters here share few words here and there, that others do not agree with or understand. That happens with a lot of subjects here and they are not moved or mod. OUR WORDS HERE OF ANY KIND IS HOW WE HELP EACH OTHER.

This forum is not just about dealing with the medical side of ALS. There are so many emotional issues that are shared and supported on this forum and quite frankly is why I come here each day. What we do here is exactly what we all should do. it should all be about compassion, love and support no matter how it's shared. There are posts we all don't agree with but we are not told that we are being moved to a post that singles out anyone.


I do understand the reason for modification at times but really disagree with what happened in your case. I read your post a couple of days ago and was upset that anything at all was said about it. I did not see anything that was shared that shouldn't be READ by all. We have been told time and time again if we don't like something don't read it. Why should we be banned to a thread that singles us out by the way we believe.

My husband and best friend do not share my thoughts of afterlife and do not share my faith (are we allowed to use the word faith). We have managed to share our life for over 16 years. Why? Because like the wonderful people here we love, respect and support each other. I haven't tried do or say anything to ever make him uncomfortable and he has never once disrespected my faith.

I hope you do sign in one more time as well as the others I have watched bow out. I want you to know that I am proud of you. I just wish you did not feel you have to leave. I never once thought there was any reason to move anything you have shared. I can also say that if my post is sent to mod or moved, I will be right behind you. I would hate for that to happen because I truly admire and love everyone on here and could care less about their personal choices. I am not here to defend mine or to preach (bad word) to anyone else. I am here because ALS entered my life and forever changed me. We entered a select club that bites big time and I need the support of everyone just as others do.

To have to fear saying one or two words that someone does not agree with is disappointing. Sorry for the rant and if this offends anyone I am also sorry. I just cannot tolerate any form of discrimination in posts that are mean't to be supportive. I also agree that we never should try to change ANYONE'S beliefs. I agree with moderation but think you should take your personal beliefs out of the picture if you are a moderator. One or two words of (F), cant use that word to much, should bother anyone here. We have a lot bigger things to worry about and at this point should be strong and caring enough to ignore that parts of posts we do not believe in.

I have copied this post just in case it goes to mod land and doesn't come back. I can cut and past in private messages to all the wonderful people I met on here. I do care about each and everyone of you but I also have to support my convictions as I have lost enough the past few months and I have needed the support of all the CALS and PALS here. I

f you are a moderator please think about this fairly and don't single anyone out by moving the for one or two words. It is disheartening and embarrassing to have to read your words and be called out for a couple of inspirational words. Every time I tell someone they are in my thoughts on here I fear offending by adding the other word. I have enough fear in my life.
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Old 04-16-2016, 12:22 PM #2 (permalink)
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Default Re: Needed to share

Thanks for a most beautiful post.

I, too, have encouraged Janelle to come back soon. She certainly did nothing wrong. The thread that was moved was someone else’s. Janelle’s post had nothing to do with the thread getting moved.

Technical point: When things “go to mod” that’s the computer’s decision, not the mods. The criteria were set years ago to prevent commercial spamming and cursing.

Don’t be afraid to express yourself. I suppose entire sermons and prayers and lengthy or authoritative admonitions should go into the Religion area, but in my mind, a simple “Bless you” or “Follow your faith” is certainly not controversial.

The only people who should be “afraid of mod” are those who threaten the supportive environment, like scammers and trolls.

I hope everyone knows that the owner of the website, David, is very much an inclusive and supportive guy. So, as a mod, I feel it’s my duty to try to make this an inclusive and supportive environment. You and Janelle certainly help out a lot. So I thank you.
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Old 04-16-2016, 12:37 PM #3 (permalink)
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Default Re: Needed to share

Janelle and I are on the same page, and she has confirmed that it was not moving the post per se that led to her decision, but rather a long journey, as stated in her last post. No one's beliefs were censored or discriminated against -- quite the contrary. And no post saying "bless you" or "follow your faith" has been moved, ever, as far as I'm aware.

No one ever said anything about Janelle doing wrong, whatsoever. I'm amazed what a game of "telephone" this thread has become.
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Old 04-16-2016, 02:41 PM #4 (permalink)
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Default Re: Needed to share

Hi Mike,I understand the need for moderation and most of the time I think it is a good idea. I totally respect everything Laurie, yourself and the rest of the mods do but I think that sometimes Laurie is a little to quick to say something even if the computer is doing the modification we don't need to say why it was moved if it was a sensitive subject.

This case, HE did not say anything that I took as religious tone or suggestion and I am pretty sure a lot of other people would not have either. What this caused by mod or words from Laurie was worse than the one word HE USED. He bashed out and took offense to being called religious and those of us that have any faith were offended INCLUDING Janelle. None of that would have happened if nothing would have been said. Those who do have faith in the afterlife know that we should never worry about blessing, praying or talking of our faith.

I do want to say how much I appreciate what Laurie and everyone else does here and says and it is invaluable even when I do not agree.. I just can't not stand up with it comes to my belief and others belief. Our rights are taken away everyday and this forum should not be the place for it.
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Old 04-16-2016, 02:46 PM #5 (permalink)
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Default Re: Needed to share

Oh and if this thread has become a telephone than I am quite the happy camper. I think if we have something to say we should say it and any subject that gets people talking is good with me. If you don't want to join in than don't. I do not talk religion here because I don't practice religion for many reasons. I do practice faith in someone bigger than myself, and I do pray for everyone here and I am proud to be a telephone if I can share with people of faith or non faith. Doesn't matter to me!
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Old 04-16-2016, 04:28 PM #6 (permalink)
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Default Re: Needed to share

Thanks Deb - you do have the right to put your view forward.

You should also not be 'talked down' at for doing that, which seemed to me to be the point of this whole thread, but it didn't work I see.

But what I like is that you have not tucked your tail, nor are you baring teeth, you are just calmly standing your ground.

I will say just one last thing - I would have read the OP behind all this without blinking and thinking religion too. It would have slid by with people simply responding to the post. Now the post has been ripped apart and the OP can never get it back to where it was. I wonder how he feels when he actually opened up and bared his inner feelings, probably thinking he was in a safe place. This is so important to remember - every one of us here are fragile, and when we bare our feelings we need to be supported, even when we don't agree.
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Old 04-16-2016, 05:11 PM #7 (permalink)
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Default Re: Needed to share

Thanks for the support Tillie. What's important to remember that he had a wonderful post that was so important to many of us. He rated the way he did because as far as he knew he was talking about life end choices and listening to our PALS. I believed then and certainly now that it had nothing to do with religion. He was fragile and because of that it turned negative to others of faith. Belief, religion, or non religion we are all here to be heard and supported without being told we are posting in the wrong section when it was a innocent use of one word. I love this forum and have received support and love in a time I really need it. I want that for every one without them being afraid that one word will be noted out loud for all to hear and then be moved to a thread they don't belong in. I get that I should not post my religious or in my case spiritual beliefs. We all agree that we can go to that thread if we want to talk with others that believe like we do. I don't remember ever seeing anyone here trying to convert someone beliefs. All I remember is supporting each other even when we don't see eye to eye. I also don't need to be chastised for pointing this all out. I don't want to see people who need us bowing out.
So enough said and now I am hanging up the phone. Lol
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Old 04-16-2016, 05:18 PM #8 (permalink)
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Damn I hate it when that dial tone just buzzes in your ear because the other side of the connection is gone .....
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Old 04-18-2016, 09:25 PM #9 (permalink)
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Boy, I haven't been on as much lately. But, this forum is starting to have more drama then I get by watching my daily Jerry Springer. lol
Love to you all, Kim
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Old 04-19-2016, 11:30 AM #10 (permalink)
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Default Re: Needed to share

As someone who is very new to the forum, I was somewhat taken aback by the whole deal. I am a person of faith and it did make me wonder just where the boundaries of "appropriate" lie. (Still not quite sure.) That said, I am not easily offended and read all posts with "take what you like and leave the rest" in mind.
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