16 replies to this topic

[Nichole]

I have decided to cancel my account on this forum. I honestly don't feel comfortable anymore with all the "pretenders, wannabees" and whatever else people who come on here and lie call themselves. I understand that you can never tell who you are actually talking to on the internet, and I have never joined anything like this before for that reason. I never dreamed that people would be sick enough to lie about have these sorts of terrible injuries/sickness. I have talked about very personal things to people on here that I wouldn't feel comfortable talking to my best friend about, because everyone else here is "supposedly" going through the same thing.
I do fully understand that there are a lot of honest people here who just want to talk to others in the same condition, and I really want to say thanks to all of you who have answered my many questions. I hope that along the way I've been able to answer some of yours. I wish you all great happiness in your lives!

[jakhep]

Yes Nichole you are quite right in what you say, im fairly new to this site compared to some others and i dont have the same enthusiasm for it i once had because of the s pretenders/wannabees/sickos or whatever else they are called, this kind of thing is the result of their actions, good people leaving the site, its a crying shame really, they certainly dont need sympathy they need something else which i wont mention here, i wonder if they can sleep at night knowing the damage they are doing to others with their deceptions, as i said in another posting , once you lose trust you lose everything.

[wheels5894]

Well I hope you both will give the site another chance. Simon the admin works very hard to keep the site clear of bad people and pretenders. The ore of us that are here, the more there are to spot problems and tell Simon. That's the best way to keep the site clean.

Obviously there is no way we can be sure of anyone on the internet but you are right and there are some good, honest and helpful people here all ready to help as you have seen. Stay lurking for a bit and see how things settle down.

[hockeydahc]

I agree the fiasco involving John Anderson, was more than likely exaggeration and not a complete lie. (prayers thread) I would certainly hope so anyway. I guess I still feel confident in Simon's ability to remain in control of that stuff.

I think the same as you: "I have talked about very personal things to people on here that I wouldn't feel comfortable talking to my best friend about,"
my thought is: I am certain my posts are my honest opinion or my personal experience, and though I may not want to share it with anyone except right here on a semi-private forum, if anyone were to find out, be it friend or foe, no matter how embarrassing, I can't deny it, so I must own it.

I'm sure you have more to offer new registrees with your experience. I hope you change your mind, but I could understand why if you didn't.

[smokymtn memories]

Nichole, sorry to hear you're leaving. I agree with Wheels5894, hang around a bit and see how you feel. The majority of people on here are very helpful and most sound like someone I'd enjoy meeting face to face. Simon does an excellent job and if you've discovered something going on, please send him a personal message and I'm sure he'll investigate and correct it.

[Texaswheelz]

Yea, I agree with the others, stick around. There is great advice here if nothing else. So if you want, just take it as that. Don't get involved or I should say emotional over anyone or any post here. It might sound cold, but if it keeps you here where there is a ton of others in the same situation you are in, it's always nice to know you have a place to turn for answers or advice with problems you might have and others have also had in the past.

Some one might be able to join here and tell a story about what has happened to them and it might be false, but those aren't the people that will be answering your questions, they'll just be trying to get attention by telling stories.

This is the only forum that I've joined and stayed active in for as long as I have and I normally tend to check it once a day for new post or new replies to not so new post, either way there is something worth reading here almost daily.

[juls]

I think it would be a shame if people were to start leaving..."bad people" are everywhere and it will be something that we'll always have to deal with..in real life and on the net.
Simon does the most amazing job at sniffing these people out and canceling thier accounts asap..I still feel safe on here and know that I can trust everyone, this site has helped move on in my life so much and still continues to do so....
I hope you decide to stick around Nichole...if not though, it was really lovely to meet you

[Kev-O]

I have been burnt on this kind of stuff B4 an all i did was learn form it. If some thing does not sound right then go with your gut feeling on it. Dont trust everyone on the net but dont be afrade to make friends. just read post an see if they sound fishey. there are alot of good people out there you just got to find them.

[Apparelyzed]

Hi Nichole,

I can understand your reservations about remaining a member of this forum, but as with the rest of the members, I would urge you to stay, if only to lurk.

All forums are known to have people in them who are not all they seem to be, that unfortunatly is the nature of the internet. Remember that the numbers of people who try to deceive are in a minority.

What I can assure you however, is that if someone is brought to my attention, and I find evidence to back up serious allegations, then they will be removed.

There are other spinal cord injury forums who do not take such an active role in looking into such members, but that is either because they are not properly maintained, or because they are so large that it's very difficult to manage them.

I hope this helps calm you anxieties about this forum, however, if you still wish to cancel your membership, please PM me.

Best regards

Simon.

[bigsmiles]

Can I just ask something please?. I have recently joined a couple of forums (Non SCI) and have noticed that no one is allowed to “lurk” but must log in before you can read anything, I’ve always thought it good to look in and not always have to log in but I guess every forum has there own rules etc .One forum after I logged in sent me a pm to say “Hi we know your reading so why not join in” kind of made me feel pressurised to say something. I just wanted to ask you Simon if you ever thought of doing this? I don’t think it would act as a deterrent as there will always been strange people about and you will never know who you are actually talking to. I hope you don’t cancel your account Nichole as I’m sure this site is/has been a good source of information for you. The person in question obviously has a lot of issues/problems and is most likely completely harmless and is just out to seek attention., this is an illness in itself. My advice would be to just see it as being a very sad situation that has now been resolved and also someone in need of help. I do feel very sorry for those that gave time and empathy to this person. Well lets hope you stick around even if you just pop by from time to time

[wheels5894]

Bigsmiles (love the name by the way!)

I admin a forum dedicated to a single operation, Septoplasty. We are open for anyone to look at in fact it is about the only forum in thwe world for Septoplasty. I get a lot of odd people and have considered all sorts of things to keep bad people out. In the end I decided that the work of deleting bad people was worth it if genuine people could read all the posts. Mind you, I don't go with lurkers; until someone posts there is no way of knowing what they are there for so lurkers get a few days only.

Now here in the UK there are basically 3 SCI forums. There is the Spinal Injuries Association Forum which can only be seen by registered members and which has moderation in place such that only a mod can actually put up posts. Apart from another small on, this is the biggest and best in the UK. now if someone has an injury or someone has a relative injured, then being able to see this posts on this forum might well help them considerably and just for that I would hate to see any restriction on viewing the board. Bearing in mind that, no one needs to join except to post. So, lurkers have no need to be there.

I hope this forum stays as it is and that the people thinking of leaving stay. We have a good community here so let's stay together to help each other.

Robert

[Apparelyzed]

Hi Bigsmiles

This whole website is here to help impart information about living with a spinal cord injury.

If this site was restricted to only those who registered, then it would also stop the search engines from indexing the site, and no one would be able to find the information they were looking for. The vast majority of visitors who come to this site do so from search engines, as these days, the first thing someone does when looking for information is to go to a search engine.

There are restrictions in place to stop non members viewing certain information, such as certain sub forums, members lists, profiles etc. At the moment, if you want to see such details, or contact a member through their profile, you need to register.

The way I have the system set up at the moment, allows freedom of viewing the popular SCI topics, with the security, as far as I am able, to protecting members privacy.

Regards

Simon.

p.s. is that Robert aka Kanga?

[bigsmiles]

Thanks for putting me straight on that Simon and wheels .Its true what they say, we learn something new every day. I must admit these dog forums are a bit strange I’ve recently joined must get myself out more often. Cheers guys !

Yes is that you kanga?

[Nichole]

Wow, I had no idea so many people would ask me to stay. I really don't want to leave, so maybe I'll just stay and "lurk" for a while as suggested. I know there are some great people on here, and I'm positive they outnumber the...others for lack of a better word. Its just made me feel uncomfortable talking on here, especially with the last person whose story wasn't adding up, who I had talked to through messages several times and I felt great sympathy for. I guess it doesn't make since to stop coming here because of people like that, because then in a way they've won haven't they? I know Simon does a great job looking to things, as I've reported a few "strange" things myself that turned out to be pretenders/wannabees. That's the only reason I joined this site because I know someone is moderating it to the best of their ability and I'm very grateful for that.
Anyway I guess I'll stick around for a while since so many people think I should. Thanks for caring enough to suggest I stay.

[itsjustme]

I don't even really know what happened because I stopped reading the post several days ago that I can only suppose is the object of Nichole's disallusionment. I have seen that someone has been banned in connection with that post so I'm actually just putting 2 and 2 together.

I saw some red flags quite some time ago and I just almost emailed Simon to ask if this person was really on the up and up but then in light of some of the responses back at that time and knowing that Simon is so on top of things I thought who am I to question. Maybe had I spoken up, Simon could have done some investigating to see if maybe there was activity by this person on other forums and whether or not the stories were really adding up. But I hated looking like such a skeptic in light of his popularity.

I love this forum and ALL of the people here. They are inspiring with support and stimulating when we don't agree. I think that Simon does a great job of making this a safe and welcoming place to be.

Please don't leave us Nichole!

[wheeliebear75]

I know we're all feeling some level of betrayal here, but this was ONE person. I know a lot of us are now feeling unsure of who is who or what the real intentions of someone are. I also think though that along with seeing the betrayal of our trust we should also be patting ourselves on the back. We figured out that something didn't smell right......and he like all the other pretenders and wannabes are 86'd and gone. If each of us in the forum looks for discrepancies and such.......we'll be rid of them.

I have an incomplete injury........and as such I'd always felt like I was in some kind of private limbo;not AB not completely paraplegic either. My doctors swore to me "you're not the only incomplete" and "there ARE other people like you who have some sensation". I had NEVER met anyone else like me before this forum. There are others out there that have the same issues I do. I've tried joining groups for SCI before, but because I didn't have a complete injury and I still had some sensation and use of my legs I was NOT accepted. In this forum I've seen people who are able to walk with canes and yet they still find acceptance. Once I came here I felt like because my life has been seriously impacted by a spinal cord injury, it isn't at what level (C,T, or L) or how much ability I retained or lost; but just that I did! I don't know if anyone else has felt this way about apparelyzed or if it's just me.......but I for one liked the feeling of belonging and acceptance and mutual question and info gathering. I don't want to see members leave due to a select problem few. Nichole I don't exactly know you......but I still hope you'll give this another try and together we can all make sure that these people don't ruin it for the rest of us. It's amazing how good it feels just to know you're not alone.

[hockeydahc]

I felt the exact same way wheelie. not quite disabled, not really AB. where do I seek acceptance. the site has done wonders for me by just being there. I'm still unsure how to explain it to Ab people. Those with a disability know the spinal cord is a wonderfully complex and uniqe thing. Ab's still don't get it no matter how I explain. a shame really.

I think it's great you're giving us a second chance nichole. smiles from me.