Ronel,
I know that my posts were among the most strident and probably among the ones that nade you cringe more than a little. For that I am sorry--I did not mean for any of my posts to be an attack on you, I promise. Rather, I was upset by some of the more cavalier responses that followed, and then mainly because they touched a nerve due to many posts that have been made through the years that express a similar point of view.
I meant what I said when I said I was very happy that your brother was doing so much better--I am happy to hear about anyone with AS who is doing well. And what you said in this most recent post is very true: if someone has found something that works for them, be it positive thinking, believing you are more than the disease, yoga, the NSD, or anything else, then it is important that others respect that person's belief in what worked for them. And, believe it of not (I wouldn't be surprised if you choose "not" after the tone of my posts), I absolutely do respect you and your brother and respect the choices you are making in battling your AS.
The one thing that I have a very real problem with, however, did come to the surface in this thread, but that was absolutely through NO fault of your own--I want to make that totally clear, ok? You were posting your brother's statement, and simply trying to share good news with the forum, which is always a plus. The one thing I have a problem with was touched on in your brother's letter--I won't try and lie about that--but it was really hammered home by one user later in the thread. And, just to clarify again, that one thing is something that has come up time and time again through the years here at KA, and it has caused a bit of strife almost every time it pops up. Quite simply, that one thing is this: On more occasions than I care to remember, posts have been made that essentially say to all KA members: "If only you would stop being so negative, if only you would take ownership of your disease and refuse to let it rule your life, you could be cured like me!"
In other words, many people here who have suffered greatly for a long time--myself included--feel as if we are being told, in no uncertain terms, that we have no one but ourselves to blame for being sick. That if only we would stop thinking about the disease and start thinking about being well, we would be miraculously healed. You know, I can actually believe that line of thinking for the absolute mildest forms of AS that has been caught at the earliest stages . . . . maybe. But for those of us who have AS in one of the most severe ways you can get it--extreme kyphosis, fusion of not just the spine, but pretty much every major joint to one degree or another, and EXTREME pain as a result of these other items . . . well, I think you can understand why it might make me, and others like me, a little bit angry to be told that if only I had thought differently, if only I hadn't been such a negative person about my disease, I'd be fine now. Honestly, I can't even adequately express to you how incredibly hurt I was the first time I read that sentiment here in KA.
At the time, I was, like the folks we have been most worried about in this thread, a new and impressionable member of KA (I cannot remember the month or even the year, but I hadn't been here long). My disease was better then, but it was still bad, as I did not find KA until quite some time after I had had both hips replaced and a spinal osteotomy to try to straighten me out some. Here I was absolutely thrilled to find this place, and then, bingo, I read a post that tells me my illness is all my fault. That I had the power to stop my disease at any time, but I chose not to because I just couldn't overcome my negative energy and break through to the positive side of things. I'm sure I am overstating the potency of that actual wording in that post, but not by much, not by much at all.
I was devestated at first, but then anger took complete control. In my early days, I was even more of a brigand and hothead than I can sometimes be now (those of you in the peanut gallery can just shush up right now--I've owed up to my misdeeds long ago, and you must have liked the way I cleaned up since you made me an admin!
). When I read that post, I let loose with a ripping response of my own, basically telling that person, "How dare you try to blame me for this horrible disease." I'm sure I used a few words that earned the *BLEEP* notation--maybe more than a few--but boy did I feel better after I'd let loose. I wasn't the first to post, nor was I the last, and after I settled down, I took the time to read all the other posts and was very, very relieved to find that I was not alone in my anger and hurt. Quite a few others felt the same way I did, and once I saw that, I decided that I would stay here after all and give it another chance, as I had already decided that any site that had folks who felt the way the original poster did was a site I didn't need to visit.
Anyhow, I hope this lets you better understand my reaction today and does help convince you that any anger I had in this thread was not directed at you in any way. Now, if your brother had posted his letter himself, I am sure I would have posted my objections to a few of the statements he made that drifted toward that "we can all heal ourselves" idea, but because he was so polite and not in any way trying to force his views on others, my response would not have been an angry one, at least not like that post from long ago was. (I did forget to mention in my statement above that the other thing that pushes my buttons when someone makes a general "you can heal yourself just by thinking it" type post is when they also make it clear that their way is the ONLY way to truly treat your AS, and that anyone who tries something different is just wasting their time. There is little I can't stand more than when someone tries to force his/her beliefs down my throat--that is probably my A-No. 1 hot button. Clearly, your brother did nothing even close to that.)
Additionally, as you might have read in other posts, I am going through a very rough patch right now. My insurance has been incorrectly canceled, and I am fighting right now to win my appeal and get it back (which is absolutely what SHOULD have happened already), Because I have no insurance, I am five weeks overdue for my Remicade treatment, and I am basically in agony right now. I am typing this on my laptop from the comfort of my big comfy recliner, which is ok, but I am only still in my chair because I dread how much it is going to hurt when I stand up to go to bed. Well, that and my stupid insomnia, which had disappeared the last week or so but was back with a vengeance tonight. As a result of this pain, I am quite a bit grumpier than I normally am, and thus it might have appeared that I was either angry with you for posting, or very upset at what you posted, which, as I've explained, isn't really the case.
As for your assertion that you have seen posts involving success stories receive poor receptions here at KA, I have to admit that this does surprise me. In my experience, success stories--either of the long-term kind or even of the "hey, I had a great day!" kind--are usually warmly welcomed and met with posts that say, in one way or another, "good for you, that's great to hear." Now, I will admit that when those success stories drift into alternative treatments--sometimes VERY alternative treatments--they are sometimes met with skepticism or worse, but I've always thought how strong those responses were depended largely on the tone taken by the original poster. Of course, there are exceptions--we can't really know what post is going to set one person off, or predict what direction a thread might take as the number of responses builds. If you care to point out any examples of what you think were overly negative responses to a success story, why don't you send those to my mailbox here at KA--I would be more than happy to take a look at them and "talk" to you about them through our mailboxes. You certainly don't have to do this--was just extending the invitation.
OK, I think I can't delay standing up to go to bed any longer. I hope that this post has given me a chance to explain my actions in greater detail, and, as the same time, made it very clear to you that I absolutely do respect your views as you present them here at KA. I am sorry if it seemed that my grumpiness and anger at another poster was directed at you in any way, as that was certainly never my intention.
I hope you have a great day,
Brad
