A Whole New Normal

This morning was a buffet breakfast (OMG..I restrained myself from O.D.-ing on the bacon) then closing comments, and off to the last two breakout sessions.

Today was “my” day, the first was “Coping with an AN” where Kate Boswell ran a breakout session we heard seven strategies to deal with the AN, and yes, I did all of them during the course of my journey! The second was East-West medicine, where he talked about acupuncture and acupressure. Check.

Then it was over.

Really?

So soon?

I got a little misty-eyed, I mean, when am I ever going to have a chance to be in a room (cold and noisy BTW) with so many people who have lived my story? I made a lot of new friends who I hope to keep in touch with. I gave my contact info to EVERY newly diagnosed and watch and wait person I talked to. That was my favorite part of the whole weekend.

I hope to join the ANA in two years when they meet again. I wonder what it would take to get them to come to Seattle?

😉

I hung out at the pool for a little while, then decided to go for a walk. There’s a photo exhibit across the road from my hotel, then I took a walk down Avenue of the Stars. I guess people don’t normally do that, because two cabs stopped and offered me rides.

It will be good to be home.

I’m energized and so touched by all of yesterday’s stories, I even got up in front of a room full of “new normal” participants. The room was mostly filled with post-surgery attendees, but there was a handful of people that included those who were watch and wait (they have known about their tumor for a while, and are not yet “needing” to take action) and those recently diagnosed.  One gentleman found out about his tumor THIS WEEK!!.

The panel talked about their facial palsys, their cognitive issues, their debilitating headaches, their depression, their fatigue, their endless and continuing dizziness… I know it’s important to know many possibilities that are ahead, but what about ALL of the possibilities? There was not one person on that panel who retained their hearing, had no facial compromise, and regained their balance completely. I wanted for the newbies in the room to hear that the new normal included appreciation for friends and family. I wanted for the newbies in the room to hear that the new normal included setting boundaries against situations that did not fulfill or inspire the panelist.

I know these people are out there. I was lucky that I met someone who did before I had my surgery, and that was the story I held on to as I entered the operating room. “I’ll be just like that.”

Maybe next time.

I hope that my getting up helped calm the nerves of the people there who were pre-surgery, to let them know that sometimes there are no debilitating side-effects to “get over.”

Today is a new day.

Today I’ll be recording my story on video for the ANA archive.  So that when newbies go looking for information on the internet, maybe someone will find mine and have hope..

I’m excited to attend the national Acoustic Neuroma Association Symposium in LA starting today! Many attendees are here post-surgery, looking for answers to issues and complications arising from their surgeries. Some are here pre-surgery, to see what’s new, what’s possible and what’s in store. (Four years ago, that was me.)

I am here, along with a few others, I expect, post-surgery, with no visible or annoying complications or issues. Many are active in the forums, and I look forward to meeting new friends. One can never have enough friends!

I am here, because when I was pre-surgery, I needed to see all of the possibilities. Ok Friday…Bring it!!

Hello Marla,

Thank you for contacting the Acoustic Neuroma Association of Canada to update us on your recently published book. I think its inspiring to people impacted by Acoustic Neuroma, to have stories such as yours published and available to the public-congratulations for having the courage to do this and thank you for assisting others throughout your journey.

ANAC would be honoured to receive donations from the sale of your book-thank you for thinking of us.

I wish you the best of luck at this weeks conference,

Take care,

Theresa Forson

National Coordinator

Acoustic Neuroma Association of Canada

I leave for the Symposium in just over 24 hours..a handful of people have (or should have) finished reading the book by now, and so far, no feedback.  I can either assume they hated it, or they are overwhelmed by it’s brilliance and can’t respond.  😉

I got an email from the PowersThatBe from ANA, and I’ve been told

“Unfortunately we have a policy that attendees cannot distribute or sell anything at our symposium.  If you do this, there is an implied endorsement about it.”

I can just imagine myself wearing an oversized trench coat, packed to the rafters with a lining of books, standing hunched over in the darkened alley next to the hotel surrounded by spent bottles of beer and champaign, passing out books like crack cocaine.

Or not.

Let me know if you want a copy, and we’ll figure out a way to connect.

The book is available for purchase!!!

You can order your copy on line here:  http://www.villagebooks.com/book/9780615852133

Or, find me at the Acoustic Neuroma Symposium in LA next week.  Free copies available to newly diagnosed attendees!!  August 9-11 2013!

Thank you Thank you Thank you!!

When I attended the most recent local Acoustic Neuroma support group meeting in Washington State last winter, someone had a copy of a newly printed memoir of a post-surgical story. The author wasn’t whining, just telling his story.

I decided to self-publish my story. It was, thankfully, the one I needed to hear when I was diagnosed that I could not find.

It’s based for the most part on my own personal journal entries that I kept after my diagnosis. I hope that the support and hope and encouragement I received from other AN survivors could be “paid forward.”

My plan is to bring copies of “A Whole New Normal” with me to the AN Symposium in LA in August 2013, and give it to newly diagnosed attendees. (and sell it to the doctors…)

They’ll be available for sale through the www.villagebooks.com website, and on this website  starting in August. (this Website is still under construction.)

Any profits from the sale of the book will be donated equally to the Acoustic Neuroma Associations of the US and Canada, the two organizations that I received information, support and encouragement from.

For the time being, if you are a Facebook user, you can “like” the Facebook page (https://www.facebook.com/AWholeNewNormal)

Well, I had considered having my book available for sale on Amazon, but after reading this story, I am re-thinking…

http://www.shelf-awareness.com/issue.html?issue=2049

You WILL be able to order my book through the VB website, as well as in store as of this Tuesday. And if it’s a best-seller hardback you are looking for, well, there’s always your local library…