AN Book (Need stories ...)

[msuscottie]

When I was first diagnosed in 2004, I searched the web for any books that were out there pertaining to AN's or Brain Surgery. There wasn't much that I could find other than "I Had Brain Surgery, What's Your Excuse?"
That was a good book, but after I knocked that out in a week, I wanted more. There was nothing. After meeting so many great people here and sharing some amazing stories, I realized that our stories are the ones that I was once searching for to help me through my AN journey. I've decide to put together a book that could be an outstanding resource for anyone living with an AN. I'd like to get about 10 writers with different stories to share their experiences. I am going to write a chapter about my 2-stage surgery, and we'll have someone write about GK, Watch & Wait, Misdiagnosis, you get the idea. At this point I'm just trying to identify the writers who would like to share their expeirience. If you think you have a pretty unique or interesting story, and would be willing to share it in about 10-15 pages, please let me know. I would love to find different experiences and different ages/parts of the world. I think this could be a really great thing. Once we have the writers in place (I know Laz, GennysMom, Sue & Chris have already expressed interest) , you'll have a few months to write and we'll hammer out the other details (any profits would be split equally). Let's start by doing this, if you're interested please reply to this below with the following info ...

Name:
My treatment option ...
I'd like to write about ...
My story/point of view is unique because ...
Something else that should be included in the book is ...

Thanks everyone!

[mykey]

Scott,
 My name is Michael Huggins
 Diagnosed 1/18/07. Currently (this week) seeking 3rd Dr.s opinion on my candidacy for translab or GK.
Being a musician possibly makes the decision for type of treatment a little more intense. Also, having had a few major surgeries before (removal and 2 resections of my ascending colon) and continuing to deal with some permanent complications of those surgeries does

[msuscottie]

Thanks Mykey,

Maybe a chapter about  "choosing the right treatment option for YOU"?

[Lorenzo]

Hi,

I wrote a blog all along... mylmup.org

ciao,

Lorenzo

[nannettesea]

Scottie-
I just sent you a personal message....
Nan

[msuscottie]

Awesome.

If we can find enough people to get this going, you've got the "Recovery" chapter. Let's see how many people step up over the next few days, and then we'll lay everything out for our "group." I figure if we can get 10 people to do 10-15 pages, and then in addition to my chapter, I can write an intro and a wrap up, we'll probably get a 150 page book out of it. I've actually been contemplating writing my own book about this for some time now, at the very least it could be something to chronical my journey, but then I thought that it would be more helpful to others to hear some different stories/perspectives. You're definitly IN if we can get this going, now you can help me recruit more folks! Who else has an interesting story out there?   

[matti]

I had my surgery in 1998 and would love to write about my journey. Would it be OK to include my husband's thoughts and views?

Cheryl

[msuscottie]

Of course it would, each person's chapter will be what they want it to be, maybe you could focus on that part of it though, how it affected your husband.

[Gennysmom]

Scottie, that's a great idea, we should let a caregiver do a chapter from their perspective.  Shelton would be great (Cheryl's husband) or I'm thinking Patti UT's husband Mike based on some recent developments of spending time with other posties giving him an interesting perspective. 

[Obita]

Hi Scottie:

My story was pretty blah but I would be glad to help.  I think you should look up Tom, the guy that spent the night in jail??

Kathy

[Lorenzo]

oh, forgot, as a designer i'd be delighted to take on the design of it, inside and out, cover, pages etc. Can I just include my blog? might be a different way to approach it, i can just trasnpose most of it.

What d'ya think?

Ciao, Lorenzo 

[msuscottie]

Sure, might be an interesting angle. I'll try to read your blog today. Thanks.

[Lorenzo]

sure, feel free to read it, that's what it's there for! Just remember, I will have to edit it down a bit in places. Not all of the stuff will go in, just the actual blog section. My intention would be to keep it in the blog format, chapter by chapter. Nothing new but it might be interesting.

by the way, any images going into the book? There probably could be. And a section of information on ANs, resources, etc.

Ciao, Lorenzo

[msuscottie]

Yeah, once we get our "writing team" in place, we'll hash out all of the details (name/pictures/chapters). I'd like to get about 10 writers and at this point I think we already have about 5 folks interested. The thing that I think is valuable is if each person has a different angle. For instance, I had a two-stage microsurgery, I'd like to find someone who had GK, someone who had a "textbook" surgery, someone who had a lot of complications, maybe a spouse or family member that could write their experience from the outside looking in, perhaps someone with NF2? I don't know, I'm open to all ideas. Would just like to end up with a book in which at least one of the stories will relate back to the reader, regardless of the treatment or severity.

[redgrl]

hey scott this sounds great. I have an interesting story. when i had my CFS leak i was in the hospital for 9 days with lumbar drain and they finally decided to go back in and fix the leak so they cut my head open  and stretched my jaw muscle over to plug the leak. I now have 2 long scars. One behind my ear and one up the side of my head. My jaw is always really sore and i can't open my mouth very far. It's getting better every week though and my hair is so long it hides it. Thank goodness.