Hi everyone this is Neil - I had a thought the other day that I felt might be useful. Frequently when new people come on to our Facebook page "Schwannoma Surviviors and Schwannoma Fighters" I invite them to submit a blogpost on their experiences. I have said to countless people that I had never heard the word "Schwannoma" before my surgeon told me that I had one in my spinal cord in 2009. In thinking about this I know that everyone wants to "raise awareness" about everything under the sun, including rare diseases and conditions. That, of course, is a good thing. But I have always been interested in doing more than just letting people know what a Schwannoma is and what it does to you. I had the idea that because of the gap in information, that we needed to answer useful questions about Schwannomas and their effects. I thought that one of the best ways to do this would be to create a blog, affiliated with our Facebook page, that could be used to publish firsthand stories of people dealing with Schwannomas. It seemed to me that if we put as many stories online as possible, then when other people went searching - feeling lost and confused as so many of us have, then they could find these blogposts and read whatever might be relavent to their lives.
So far, I have invited only those people who are affiliated with our Facebook page - but I also wanted to extend the invitation to anyone, anywhere, who has a story to tell about the way that Schwannomas have affected their lives. (Et aussi, je parle Francais, si vous avez besion d'envoyer un blogpost, peut etre, pas trop grand - en Francais, sur le sujet des Schwannomas) A lot of the world is on Facebook, sure, but for those of you who are not, I wanted to invite you all to contact me at:
neilmyersart@gmail.com
You don't have to be a poet or master of prose to submit a piece for the blog. I have posted almost everything unedited, except for corrections on a few misspellings and tiny things. We want to hopefully get enough stories out there to provide some hope and consolation to people who are or have been struggling with these terrible tumors. And all stories will be welcome - I have had people contact me whose outcomes after surgery were not the best. The blog is not intended to highlight only the sunny results - we will tell the story completely and as honestly as possible.
So please remember that if you or a family member has been affected by a Schwannoma, you are invited to write a post for this blog. Perhaps in doing so we can alleviate some of the confusion and suffering for those who are newly diagnosed - and know that our own suffering hasn't been in vain if we try, with all our might, to turn it to something good and useful. Thanks all!
Neil
Visit the facebook page at: https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters
