Back in 2009 when I was diagnosed with my Acoustic Neuroma, and against the advice of one of the surgeons I consulted with, I Googled Vestibular Schwannoma. Fortunately, and inexplicably, one of the first hits was to the Acoustic Neuroma Association (ANA) website. This was where I learned I was not alone in suffering decreased hearing, balance issues and tinnitus.
This was in the early days of Social Media and Facebook, just over a handful of Facebook Groups and Pages dedicated to ANs were in existence at that time, ANA’s Facebook page didn’t go up until 2011, and now it has more than 8000 followers!
Through the ANA’s Discussion Forum, I learned I had just missed the ANA’s 2009 Chicago symposium. One of the Forum members told me that a few weeks later, ANA Canada was scheduled to hold a one day symposium, just an hour’s drive from my home. I went, and was equally overwhelmed and comforted by the community I was now part of.
The ANA’s Forum and local support group meetings were my touchstones for the months leading to surgery. I continued going to local meetings well after my treatment to support others who were diagnosed after me, as well as to stay connected to the people with whom I shared this life changing event.
A few years later, I attended the 2013 ANA symposium in Los Angeles, where I was again empowered by the number of people in attendance who were in various stages of their journey. Some had undergone treatment more than 30 years before I was diagnosed. Others had received the results of their MRI that very week. By then, I had self-published a journal of my experience of self-advocacy that led to diagnosis and the road to treatment.
One of the panels I attended consisted of a few current board members. These were people who, like me, had found support and encouragement from ANA. They spoke of giving back to ANA by being active in the AN community. Then, Board President, Jeff Barr made a general announcement, inviting those interested in joining the organization in a powerful way by serving on the Board, to contact ANA directly.
They didn’t have to ask me twice. I joined the board in April, 2014. I recently realized that I consistently forget to invite people to join me on the board.
As a Board Director, I have attended Board meetings in Dallas, Nashville, Connecticut and Atlanta, as well as the 2015 International AN Conference in Shanghai. I have been to a number of patient Education Seminars hosted at treating hospitals across the country. I have led a small local peer group and have communicated with those who are newly diagnosed by email and phone.
I didn’t need to be on the Board to do any or all of those things. Being on the Board gives me an opportunity to participate in a powerful way to honor my passion for this organization. If ANA is able to be in service to one person because I play a part as a member of the Board, it is worth everything to me.
One of my favorite things to do is to make connections. I recently created a virtual peer group of musicians who have been diagnosed with ANs. All of the things I do involve getting to know the stories of other AN patients and their families and friends. Sometimes, I even get to meet people in person!! I want to hear your stories, everything that happened, I want to know anything you would have done differently.
There is room on the Board for you. You will not regret it. Consider this your invitation.