A message delivery
[FONT=”Microsoft Sans Serif”]NGG is a friend of mine. He’s actually visited me in San Francisco and we stay in touch. He has been following this thread and the forum in general and he felt compelled to express himself. He asked me to help him do that and I agreed. This is what he had to say:[/FONT]
[FONT=”Comic Sans MS”]Hello to my GBS/CIDP family!
I hope you are all persevering through recovery and savoring whatever joys of life you can sink your teeth into!
I’m working towards getting back to work and have been fortunate to have colleagues who are helping me with this next battle. So far, so good.
I’m also having fun producing another ‘Free the Children’ charity concert involving youth performers. This will be a prelude to our annual charity rock concert that we hold in late May. It will be a unique experience for us, as this concert, slated to go December 21 will be an ‘unplugged’ event (no electric guitars-sacrilege!), something we have never ventured to do. We are all excited to take on this challenge. On top of all this, the music program is to be featured in an article on the charity’s popular blog.
My family life is better than ever. The boys are getting big, doing very well at school and we go to the pool at least three times a week. Lisa has been getting freelance work and this allows her to be at home. Bills are paid-what me worry?
I want to apologize to the folks who found it necessary to have me banned from the site. What can I say? I’m a PUNK! and if there’s one thing that remains unchanged about me post GBS is that I will butt heads with folks from time-to-time, something that the moderators do not want to tolerate, which is fair-it’s their site.
But if this is to truly remain an OPEN forum, then the membership must be ready for the next PUNK to come along as GBS/CIDP is not a sickness that only strikes the tolerant and congenial. I will also note that depression is a major factor in recovery and is often exacerbated by medications and painful residuals. To think that all of the members will always be posting and responding in a balanced frame of mind is difficult.
I tried to keep a lot of what was bothering me to myself and instead tried to focus on what I found positive. In doing so, I got to know many people on this forum who also wanted to share positive stories. My other goal was to speak to people in the post-acute phase of recovery in a voice that pointed towards a possible positive outcome. Doing this was a great help to me as well.
However, I also received responses and PMs that accused me of not having residuals, pain or other issues common in recovery. I was told I was a pest and that I was being TOO positive. I had to point out to some people that I DO have pain, both physically and emotionally. I had to illustrate my frustration of having young children and my fears of being able to have the physical capacity to finish raising them. Or I wrote of how my hands were largely ruined for guitar playing and my ability to lead a band stolen because of extreme fatigue. Might not seem like much to some, but to me it was a crucial part of my life.
I kept a lot of this to myself, but what did really got me going were responses by some members to people’s posts, telling them they were wrong in how they felt or understood THEIR recovery. Differing views on how to approach healing were being challenged along with comments that people were ‘foolish’ and had subscribed to ‘quackery’. People were speaking as though they had authority over others understandings of their own illness despite the FACT that there are still many GBS/CIDP ENIGMAS to be cracked.
Thus I felt the need to debate those who felt they had the ‘authority’ to tell others and myself that we were wrong in our understandings. And while the debates did become heated the notion that I was writing in hostility is only partially correct. I don’t feel as though anybody was ‘in my crosshairs’, but tell me that I don’t understand my own experiences with how MY illness was handled by some of MY medical team and yes-watch out, because I will bite back.
I appreciate the posts here by members that became close friends. I don’t know if the mods will let me back, presently my status is listed as reason for being banned-‘none’ and date the ban is to be lifted as ‘never’. That’s a pretty long time. However, I would love to hear from ANYBODY that wants to contact me. Send me an e-mail to [email]firstname.lastname@example.org[/email] and I promise to reply!
Looking back, the arguments were not worth it and in hindsight PMs would have been a better way to reply to my detractors. I would suggest that for the harmony of the forum that ALL disagreements with people’s thoughts and ideas be handled this way. Members here are going to have their ‘down’ days and open challenges on thoughts are inevitably going to lead to open conflict.
As always, please find something to put a smile on your face today and please continue to help those who are new and afraid. But try to listen and avoid public judgments. I know I look like a PUNK for my part in the argument that ended my membership. I believe there are a couple of passive-aggressive ‘punks’ as well-‘trolls’ they’re known as on internet forums. There should be no need to correct members here, only to inform as well as care for and listen to what others are saying.
Peace, love and groovy tunes!!