This is our first awareness video. It only takes 5 minutes to watch. Please watch it, make a comment and share it with anyone who you think will watch it. This is OUR video and can hopefully raise awareness for TN. You'll see that I've uploaded it onto CNN iReports who have e-mailed me with some interest. It would be brilliant if we could get a lot of people to watch and get a few people to make comments about the important of raising awareness of TN. I hope, if anything, you find the video highlights the feelings and the mood of sufferers of TN and Facial Pain.
I sat with a friend and watched this yesterday. He really finally got it. He really finally started to understand something about TN even though I have tried to tell him countless times. He has never been able to see past the fact that most of the time I look so good. He knows I’m going to have surgery soon. But he never really got an idea of the magnitude of the pain until he saw this video. I am humbly grateful to the makers of this moving piece of work.
I will sit and share the video with others but its hard in a way. Hard to be so uncloaked.
Hi Bellalarke,
I made this video because I wanted something to show the magnitude of the pain and I tried to capture the feelings and the losses. I could only hope that it would help someone, somewhere and your message has made it all worth while. Thank you.
Incidentally, I have sent the video to CNN and once they saw it they sent me an email asking for my personal TN story. They are talking about doing a TN story, and are showing an interest in using my video.
I will update on here as soon as I know the plan and give you as much notice as possible if they are going to do a story.
Thank you again for your comment, I wasn’t even sure if anyone would take the time to watch it, but I’m very, very glad you did, if it helped you to be understood a little more.
Good luck with your surgery!
Nikki
Hi Nikki
That is such good news that you got the interest of CNN. Not only does your video get the TN message across, it has excellent an artistic quality and that’s partly why I think it is so effective. Very subtle but strong. I studied video making way back in the days before PCs and IMacs. Also have had a couple of novels published and make art on a consistent basis. I’ve been working on an image that is not an illustration of TN, but rather a visceral example of what it might feel like.
Thanks again. And yes, please keep us posted!
Keep Heart
Bellalarke
Nikki said:
Hi Bellalarke, I made this video because I wanted something to show the magnitude of the pain and I tried to capture the feelings and the losses. I could only hope that it would help someone, somewhere and your message has made it all worth while. Thank you.
Incidentally, I have sent the video to CNN and once they saw it they sent me an email asking for my personal TN story. They are talking about doing a TN story, and are showing an interest in using my video.
I will update on here as soon as I know the plan and give you as much notice as possible if they are going to do a story.
Thank you again for your comment, I wasn’t even sure if anyone would take the time to watch it, but I’m very, very glad you did, if it helped you to be understood a little more.
Thanks Nikki! You really di a wonderful job with this. I was just discussing the awareness with Richard and Mimi. I am so glad our members can now use this to share. As Mimi I never shared it with my FB friends until a month ago and a received an out pour of support. I have had TN for 7 years now and I am not going to let it get me down. I wanted to take my anger and put some action behind it. So thanks again for all you have done!!
Facebook has been my lifeline for a few years now. I found, what was then, a small support group and met a few people who I really bonded with. I’ve made some excellent friends, I’ve found support day or night and thankfully I’ve been able to support others.
CNN has asked me to write my personal story. Yesterday it was approved for CNN and if they given the to ahead today, there will be a story on CNN about TN and the need for awareness. Here is a link to the iReport that CNN asked for. I’m posting it, because the more people who view it, the greater the chance of the producer of the Healt Department at CNN saying yes. Please don’t feel like you have to read it, I am just trying to boost the views!
Thank you for your really kind messages of support. I made the video in the hopes that it might help one person. I am so pleased that our TN community has found it useful.
Here’s the link the CNN story
I have not shared anything about my TN on Facebook either. I find it hard enough dealing with the disbelieving, misconceiving “faces” in my day-to-day physical world. Now perhaps I’ll share this video when I announce my MVD date.
Thank you for being a voice out there. I have been trying to get across to others just what I have to deal with and now maybe this vidoe will get that point across for me. Keep us posted.
I certainly will. If there are any updates, about the video or news regarding events on the awareness day I willl post them on here. Good luck with the video, I really hope it helps.