In Defense of Posting

In Defense of Posting
I just want to say that I think posting on this forum is a good thing. This forum is a good thing, and I am deeply grateful for it. Something positive comes out of nearly every post and thread for one or more people. Even just expressing one's feelings is a valid and vaulable activity. That's what we pay therapist's for, and they don't even have firsthand knowledge of what we're suffering. Giving and receiving support is a valuable thing. Beyond that, nearly every time someone posts about feelings--or anything-- the discusssion leads into areas of practical advice, referrals to information in other threads, and information sharing, in general. I feel the recent posts about people sitting in front of their computers and posting here and whining and not taking practical steps to improve their lives is off base. I can't imagine that there is one person who posts here that is doing nothing else. I am doing hundreds of other things related to my nasal problems--and hundreds more that aren't related to it. I have gotten the the bulk of my information about what is going on with my physiology, and how to care for myself and survive, from this forum. I cannot identify one negative thing about people spending time on the forum, reading it and posting. I am also sure that most of us are "trying God." As they say, there aren't any atheist's in foxholes. Again, spending time on a forum doesn't mean you are doing nothing else. It isn't either/or. I don't think any of us here needs any criticizing or judging, especially not for coming here and posting. We are all just doing the best we can, and may we all just give each other the best we've got.

Nice post, Kris. Thanks.

welll said Kris, what I only thought, but you put it into words

I would say i agree for the most part. I feel telling people to try GOD is a good thing.

Kris, I totally agree with what you said, as the forum is a great support for us all. I also think it's fine if people just wish to post and not take part in other ENS advocacy, as that is their perogative. If you're new to this forum, which is the time when suffering tends to be the steepest (in my experience), then that's the time you will most likely be posting and gaining from the support/advice of others. And that's how it should be. I've met many wonderful people through personal correspondence, and my heart goes out to every one of you for the suffering we endure. The correspondence has been a blessing to me and them. However, I also think it's not off key to suggest that more people should take action on behalf of ENS, the suggestion of which in no way meant to imply they have nothing else going on in their lives. I know many lead hectic or busy lives, as do I. But if you have the time to post on the forum, then I'd also think you might be willing to donate a small amount of your time to contribute to the ENS video or site. Unfortunately, what I have found is that too many people leave this forum after they start feeling better or do not wish to get involved beyond a post, and honestly that is disappointing and disheartening to me. I particularly felt this way after spending many hours compiling all the ENS member emails (>300), sending an email that encouraged people to contact me if they want to get involved in assisting with the site, and not one single person offered to help...although one person did respond saying they were involved with research initiatives, which is of course great, too. Then I also spent some hours corresponding with Tonia from PolarWrap, telling her about our website, and to my knowledge, only 2 people bought a warm air mask in the first 2 days. Her offer was very generous and I had hoped more would take advantage of it. Frankly, the lack of interest was embarrassing. I know the former webmaster was similarly disappointed by ENS patient apathy and lack of willingness to step up to the plate - although that's not why he stopped being webmaster. He simply was ready to pass the torch. And all that has also led me to wonder if we really are an active group of people who want to become involved with any kind of ENS advocacy to help others. The bottom line: More ENS advocacy is really needed to help move ENS awareness forward. I'm going to leave it at that thought. If you have just some time you wish to donate, please consider helping in small ways to help ENS awareness further along. A video on ENS is a small sacrifice of time and would go a long way to raise ENS awareness quickly. On that thought, I'd really like to acknowledge TE for all his hard work in spending many hours over the past few days updating the website. It's looking great, TE!!!

cm, I plan to help with ENS advocacy. I am only 4 1/2 months post op. I am in the stage where my suffering is the steepest (I hope.) I may be confused, but in the posts to which I was referring, I do not recall the issue of working on advocacy being mentioned. I can’t find those posts, now. My memory of it is people being criticized for not suing rather than complaining about what was done to them. The criticism, I think, was about not taking action in their own lives—and how they were conducting their own lives. I feel that is anti-productive. I am sorry about the lukewarm response to warm air masks. I don’t feel I need one. I have spent a thousand dollars on products for this, which leads me to believe that if people need the mask, they will buy it. I would consider a video, but I don’t have a camera. I could never forget the suffering of ENS and all of you, even if I did get better--which I don’t think is going to happen—so I will be working for your cause even if my contribution is nothing more than prayer. We can only offer what we have to give. I have been writing my story since Christmas Eve—the last third is about my experience with ENS. The book is almost finished. I have been leaning into the writing, sometimes feeling I would not live long enough to finish. Maybe my story will help to advance the cause of ENS. I hope it will. This is an absolute horror, and deserves much greater attention. I still can hardly believe these surgeries are being done with very little rationalization. I deeply appreciate your work, and TE’s work, and the work of everyone who makes this forum happen. I hope to return the blessing. kris

kris, you don't need a video camera to record a short -*test*-('")imonial video of yourself with ENS, although I'm sure you can borough one from somewhere. Likewise you can use a digital camera which everyone has, or simply buy or borough a ten dollar web-cam and you can record a video directly into your computer. If you are not very technical I'm sure you can find someone to help you with that. Every video is most important. If we have enough material on video, we'll eventually be able to make some short pilot documentary to sent to the discovery channel and programs like 20/20. This post is meant for everyone here, not only kris.

Kris, I didn't realize you were referring to comments about suing and personal conduct. I must have misinterpreted. I thought maybe your post was referring to mine where I discussed more people should take action rather than be on the sidelines for ENS, which was an analogy to try to stimualte some action for ENS. In either case, I really hope you are over the worst of your suffering and that you can take care of yourself and get better first; that's what is most important now for you, not other issues/advocacy/etc. TE gave some ideas regarding video cameras, so I'll leave that at that. I'm so sorry you are suffering so much and the financial expenses with ENS can be daunting. I hope you find some relief from talking with others on the forum. I remember my first half year with ENS and it was awful; it has gotten better for me, though, over the years so I hope you can take heart in knowing that there is hope for improvement. Sincerely, Chris

Kris, I just re-read your post and realized I overlooked your comment about you writing your own story in book form. That's terrific and, if you would like ideas or suggestions on how to move forward with your book, drop me a line at webmaster@emptynosesyndrome.org. I'd love to chat about that. In the meantime, please get better soon! My prayers will be with you shortly. Chris

TE, Ill try. I actually do have a camcorder but it is an old style, and not sure I can make it work with the new technology. I don't have a digital camera. I'll see what I can do. It will be a month or so.

Chris, Oh, classic miscommunication. That happens so easily. I hope I am getting to a better place. It is encouraging to hear that you have had much improvement over the years. Thank you for your prayers. I will return the favor. And yes, I will will drop you a line about my book Thank you. Kris

To Kris and everyone else: As I said in my post about the video -*test*-('")imonials: The dead-line is the 31st of March - 11 days from today! Please participate and make a substantial contribution to this forum and to yourself. This is perhaps the most important thing we can do to attract doctors and further interest in our disability. There is a reason for setting a dead-line: Those of you who have been here more than a year know that we have tried a few times to get people to send video -*test*-('")imonials, but nobody, except myself and Chris bothered to ever actually make one. The response was zero. There is no reason to wait for a month. Everyone today, rich or poor can get hold of a digital or video camera and make a short video of themselves. Please do not make a big deal about this and start delaying it. Up to now, the only one who promised to make one was "3" (thank you 3!). I'd like to know where are all the veterans of this forum? Where are all those who speak about how terrible ENS is and how we must get it on Oprah and Dr Phil, etc'... Am I expected to approach each of you individually and beg. Those of you who fear from exposure... - you can film yourself wearing a wig or sun glasses or something, or only from the profile, or sitting in a dim room, whatever, JUST DO THE RIGHT THING ONCE AND FOR ALL - GET YOUR STORY ON VIDEO. THE 31ST OF MARCH IS THE DEAD-LINE. IF BY THEN I DO NOT RECIEVE AT LEAST 10 VIDEO TESTIMONIALS, i WILL NOT BOTHER TO EVER DO THIS AGAIN AND WILL SERIOUSLY CONTEMPLATE QUITTING ALL MY WORK FOR THIS FORUM AND TOWARDS INCREASING AWARENESS AND FINDING SOLUTIONS FOR ENS! i DON'T WANT TO SOUND DRAMATIC, BUT ENOUGH IS ENOUGH. 3 YEARS - AND NOBODY HERE EXCEPT ME AND CHRIS EVER BOTHERED TO MAKE A VIDEO TESTIMONIAL - THAT IS ABSURD !!! 31st of March, not a day later!

A quick way to hid your identity is to tape yourself in front of a window. The video iris cannot adjust for both indoor lighting and outdoor lighting at the same time. You'll notice you almost never see interviews infront of a window for this reason. If you dont have access to a window 8). Any bright lighting behind a person with no front lighting will work. For hiding your voice I have heard that if you put tissue paper (paper not actual tissues) over the mic it changes the pitch enough that the recording is unidentifiable...although I'll admit I never tried this method myself the theroy appears sound (no pun intended)

View Full Version: In Defense of Posting