Stop visiting Yuku (formerly Ezboard) forum Visual snow or static

Willy Luke

"Final statement. I won't be posting or reading this board anymore. Discussing visual snow is like being on a road trip and all your doing is complaining about the bugs on the windshield... IanKC (or whoever runs this board) I do not mind if you put me on some mailing list in the off chance that science has a definitive answer one day. I can only wish you all love and great sucess, in every endeavor. I've resolved to spend the rest of my days appreciating the windshield between the bugs.

Will
(thebreezerruinedmylife@hotmail.com)"

(Willy Luke, Yuku forum Visual snow or static - General discussions - Final statement, May 17, 2008)

eebabe

"I'm with WillyLuke. I read this forum all the time when I first starting having symptoms (two years ago next month). After a while I gave up because each time I read the posts I thought, 'yeah, me too.' It depressed me more to realize that I'll probably be like this forever than just dealing day to day with the symptoms. So, I stopped reading the forum and started appreciating the windshield. I accept that it probably will never get better. It has actually gotten worse. I like to check from time to time and that is why I'm reading right now just to see if there is something new and useful. But life is too short to obsess over something you have no control over and can't change. Good luck, WillyLuke!"

(eebabe, Yuku forum Visual snow or static - General discussions - Final statement, May 17, 2008)

juliedeeinthesnow

"I feel like everyone has made some good and valid points. I think that the frantic urge to find out more or get at least some sense of validation for us kind of wanes after we've been on the website for awhile. I think that's because we understand we're not alone and we are, in fact, not making this up and not somatic and not nervous and this is important. Over time we have to decide what role we want the website to fill. It's natural that newcomers to the website are going to be more in that scared or hypervigilant place, and they're trying to figure out if their symptoms do in fact match the site, or are there important differences they need to pay attention to. That might look like a cycle of griping or repetition, but I think it's important for some. I guess we've all been there and in some ways still are there. If folks elect to opt out, I'm glad they're letting us know formally so we won't wonder. But as for myself I find the site really useful and interesting. It may not lead to a cure, but at least there's hope for progress when we communicate the facts. How else is it going to happen?"

(juliedeeinthesnow, Yuku forum Visual snow or static - General discussions - Final statement, June 6, 2008)

Don't forget, though, that no progress will be made if people just stop contributing

"Don't forget, though, that no progress will be made if people just stop contributing. I know it seems pointless sometimes, but I've seen the way this board and other websites have grown over the last few years, and it's largely because of people like us who continue to offer updates and answer questions. That doesn't mean you have to 'obsess' over anything, but there is a balance where you can learn to live with the condition but also stay up-to-date with the discussion..."

(SpeedStick [subject #468], Yuku forum Visual snow or static - General discussions - Final statement, May 30, 2008)

"Can't we do both? Can't we continue to support the cause and in the meantime live as best we can during the 99% of the time that we aren't on this board? Why does accepting this mean we no longer visit this forum and we basically resolve ourselves to not bothering with visual snow research, etc. What, you think normal visioned people and most doctors out there give a f@$ about us? We are blessed to have ksomething, but I think the cold, hard reality of our situation is we have to take care of ourselves. Funding and support for research will have to come from us.

So, thanks for giving up on us pal."

(starrant [subject #138], Yuku forum Visual snow or static - General discussions - Final statement, May 30, 2008)

"I feel a bit like starrant. There have been a string of people who feel that accepting their VS means they won't participate on the board. We've gotten a number of farewell announcements along these lines. I guess I respect that decision, but I've not really had a problem accepting my VS and still hanging out here. But, I can only walk in my own shoes, so to speak.

I suppose if you are having trouble with obsessing over an issue, and a board like this feeds your obsession, then that isn't the healthiest thing to subject yourself to.

However, knowing some of the truths about health conditions, like a probability that things may stay the same rather than improve, is an important step on the road to acceptance. I went ahead and vastly changed aspects of my life under the assumption that I would have annoying vision for a long time, and now I have a well-organized, functioning career that fits within the bounds of my 'limitations.' I have different hobbies. I know that giant action movies are just out of the question because allt hat crap going across the screen just doesn't work for me. I had to be in physical therapy to be able to walk a straight line and not hold onto the walls. In't went through a couple rounds of therapy to deal with this crap. All of that painful effort has been worthwhile, and wouldn't have happened unless I forced myself to come to terms with what was happening to me.

Another part of that acceptance process, and a nice benefit of the board, could be finding out that every new little symptom you have when an illness first hits is 'normal' for that illness, and doesn't mean you have a brain tumor, for instance. It has been reassuring to me to know that at least a few other people out there have the same constellation of symptoms that I do.

The VS and the PMA is my normal way of experiencing the world now. It has been that way for 2 years, 2 months, and 22 days. At the point where I am now, this board is something that helps enrich my experience of this wacky view of the world. "

(SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussions - Final statement, May 30, 2008)

"Well said Susie. I would also add that if you're totally obsessed with your condition, then leaving this board isn't really going to help you in the long run. I'd say learning to live with it means you can discuss it frankly without letting it hold you back too much..."

(SpeedStick [subject #468], Yuku forum Visual snow or static - General discussions - Final statement, May 30, 2008)

"I absolutely respect the fact that people find solace and reassurance from this forum. I didn't intend to imply that they couldn't. I tend to find it less than useful because the same topics tend to come up time and time again. Call it obsession or a constant influx of new people or need for constant reassurance that you're not alone. Whatever the reason, I personally just find the repetitiveness grating at times and deal with that by reading it everyone once in a while. In any case, it isn't my intention to offend because everyone is different. But I think that because everyone is different and knows what is best for himself or herself, we shouldn't be attacking WillyLuke for making a decision which he obviously feels to be in his best interest. Not every sufferer of VS has to be a crusader."

(eebabe, Yuku forum Visual snow or static - General discussions - Final statement, May 30, 2008)

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