Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group "THE" KA Book Project

Some advice from a VERY long-ago administrator.

I think I remember my name being in red sometime 10 or so years ago, between Tony and Loz, but I could be wrong. As I mentioned in my last post, I am having some cognitive difficulties. I also seem to remember that the main reason I voluntarily left the Admin position was that I couldn't keep my big mouth closed when it came to issues that really meant something to me. That being said, I originally came here today to give an update on how I am doing with all those weird symptoms I have been having that I posted about last week. Upon reading "THE" KA Book Project post, though, I just had to write this. I haven't fully investigated everything that has been said about this subject, but I really don't have to see anything to know that there is some disagreement going on right now about this issue. Even so, my advice is honest and not meant to make anyone angry. If you choose to read further and then get angry, I am sorry...

My advice to the current administration:

Don’t put up a post titled "THE" KA Book Project and then proceed to say the "NSD Success Stories" are a good starting place.

Don't then add a footnote that oh, by the way, any other success stories are welcome even though the expert who is voluntarily contributing several chapters on "AS mechanisms and treatments" happens to have a very biased view of AS mechanisms and treatments.

If you want to write "A" KickAS Book, this might be appropriate, and I say 'might' if there were adequate disclaimers that the book is based on some members' success stories with certain non-traditional treatment options. An appropriate title for such a book might be, "A Book About KickAS-ers Who Have Had Success With Non-traditional Treatment Options"… a little long, perhaps, but containing the adequate requisite disclaimers previously mentioned.

Now if you persist and decide you, indeed, must write "THE" KickAs Book, then may I suggest an appropriate starting point might be Brian's story. From there you might work your way through the history of how this small dream "ASWeb" of one very determined person became the loving supportive place that so many people who are really suffering have come to depend on through the years that have followed.

You can continue by discussing how two guys from different ends of a country came together to mold "ASWeb" into the first, very fluorescent version of KickAS.org, you might want to even look into the history of that little donkey that adorns the very Admin post that started all this book talk in the first place.

You might then want to chart the growth of the group; I remember trying to just keep up with new members on a map many years ago, and it was amazing to think of all those dots being people who were in the same boat as me. KickAS led me from feeling utterly alone to knowing that others understood, and those 'others' were all over the world.

I guess I was still a little in disbelief, though, even after that map-making project, because I just had to see for myself if the dots were real people after all. That is why I traveled from one end of North America to the other meeting the real people that are "THE" real KickAS story.

Yes, that is the story "THE" KickAS Book needs to tell. It is a story of friends, support, sharing, compassion, and yes sometimes disagreement. But that should be expected, because "THE" KickAS Book is the story of a family.

John,


Well put. I can't and won't add a thing.

Dean

Wow Johnny, what a wonderful and inspiring post! Yes I remember you in red!

As a current member admin to a former one, I hope you might come back and give us the history of that little donkey that is symbolic of KA - you have totally piqued my curiosity - did you design it? If once-upon-a-time I have heard it before, I've forgotten.

I am beginning to think we need to write multiple books when we can barely imagine the work of one! Love your encouragement and enthusiasm and appreciate your taking the time to detail your thoughts for all of us. It is definitely striking a chord for so many who care about KA with such pride. The history of this place is incredibly special.

I was hoping to read your weird symptoms update too, I think in your passion for this you forgot!
Hugs of thanks,
mig

Johnny, you are a wise man and very much missed around here. Thank you for this!

Warm hugs,

No I didn't design him (the donkey, that is). The donkey has been around KA longer than yours truly. I did adapt him for use as the Administrator account's avatar (picture). In fact I'm the one who set up the Administrator account in the first place so that the Admins could post messages that they had all agreed upon, under a "united front" so to speak.

When I was working on the first re-design of KickAS.org (when we went from those old black and flourescent forums), I was given the specific instructions that the donkey had to remain on the www.kickas.org homepage no matter what other changes I made. I was told that by Pete, himself, and he really is the one who you would need to ask more about the donkey's history.

I must admit that when I first saw the latest edition of www.kickas.org and the donkey was not there on the homepage, I was shocked.

Thanks Johnny
You have such a way with words.
Couldn't possibly have said it better.

Johnny,spectacular and simple call pointing out the enormity at times of a subtle distinction.

A KickAS story. A collection of KickAS Stories. KickAS success. Just not THe KickAS story. I don't think when the admins made the original post there was or is at present any intent to be telling THE KicAS story or that Dr.Ebrnger was trying to highjack ASKicker success.

In all candor it didn't bother me a bit because I love the idea of broadening the KickAS message or to e specific to broden the message about AS i general whether through KickAS or not. SO great for the admins to find a way and offer the membership if they chose to contribute.

Yet I could also forsee the reason for disomfort. This place means and serve so many people so differently. I am vry possessive and protective of it and what it means to me. I am sure most of us are so somehow the notion of The KickAS story and then being told that NSD would be an intrinsic part of it. It seemed like a good idea with a lot of obtacles on its way. I am far more comfortable with the story or stories to be told to be those of ASKickers or not who have had suffered differently, attempted cure differently and had success or failure in different proportions.

There is no guarantee that any such project will be even handed and clearly some will be dissatisfied no matter what. But if its A KickAS story then can't those disatisfied souls have their own KickAS story. Maybe what we have here is a full blown series of books.

If that is the case I'll sign up right now for the comedy installment called Meet the ASKickers. MOvie rights and all in the vein of Meet the Parents. In fact I can see DeNiro's gpd father cohort Al Pacino doing a sorta ganstered up Dragonslayer. "NSD, yeah Stevec is all over it now, I gave him an offer he couldn't refused and I served it up with a side of Roadkill Pizza." Camera cuts to me awakening to peek under my blanket and screaming upon the discovery of boxes and boxes of pizza tainted with BBJ freshly provided roadkill. The sheets ae soaked with tomato sauce that is now clearly inedible.

SORRY for the digression into drivel. My heart iserios on ths matter and this place.

My keyboard is busted and every other letter skips. Typos galore and this is taking forever to type but as you said the story of KickAS is the story of family. ANd as in every family someone is in charge and deserves our trust and respect. When it was Loz or you anyone else trusted your disretion and that of those helping you. My trust is with Mig and the folks now serving as the admins. I love the work they do as I loved the work you did. I love the notion of this new venture and realize it has potential pitfalls but there are lots of wise helpful people here like you to help the idea get refocused.

I know I only met you for a few days in NJ but I miss seeing you around here and always felt I'd see you and some of those folks like Michelle in MD and Sassy and Cheryl again. Be well my wise friend and let us know what's going on with you when ever you can. A lot of us here care very much.

John

I guess like me you think this might all be a bit of a storm in a teacup. Even ten years ago when I first joined these forums I was critical of the way subjective and empirical stuff was mixed up willy nilly with the scientific in the NSD information, often to peoples confusion. Nothing has ever changed but the forums have marched on robustly. There has been talk of books before, but nothing came of it. The new plans seem pretty unfocused as well and even if a publication does come from them I am sure it will have no impact on the forums. The admins have always been sensible, now even the new admin called John. Though he still won't listen to me either - but I am content nothing changes.

I had no idea Dragonslayer now actually owns KA.

That explains much.

Bilko you say you're content nothing changes, I think given the above news, and the appearance of threads like 'Fasting' in the #1 forum and the propsed biased book means change is inevitable.

Not sure why you put words in Johnny's mouth as to him thinking it's a storm in a teacup, but hopefully not in any kind of manipulative fashion, you've always seemed so reasonable.

Bill,

I really wish I could believe this is just "a storm in a teacup." Unfortunately, though, I read statements like this, "I was ready to gamble on the people here, and committed my own resources for another three years: After that, KickAS would be on its own and if it goes out of business--so what?," from our new owner.

Yes, I have now fully versed myself in the complete controversy. I know I haven't been very active here in a long while, but that does not mean that I don't care about what happens here. I cannot believe that the "owner" of KickAS would actually say "so what?" I'm livid. How can he also say that the people here are a "gamble." He obviously hasn't met the same people from here that I have.

To Owner: If I need to donate, tell me how much the site needs to operate for the next three years, and I will give. After three years, if you want someone else to take over, because you have "run out of caring," I'm sure you will be able to find someone else who will be glad to take the keys.

To be honest, though, I have been the past President of a non-profit library consortium, and I know that all it takes to get non-profit status is to have a formal "Articles of Incorporation" and then to file the correct papers with the IRS. I still think this is what needs to happen here. There should be a Board of Directors that makes all decisions for KickAS, not a single "owner."