Grouping up

When I first came home from the hospital after my acuostic neuroma surgery, my husband told me that he had been googling a bit and had stumbled upon this site with Carol’s AN story and a bunch of links to AN resources. He gave me the URL and I ventured to the site, but was too tired to read through the story. I was getting better myself, day by day, not feeling the need to read about anybody else’s experience, simply plodding through my own.

A few days later I decided to read Carol’s story anyway. It was a long read, and the length of the recovery process surprised me. As said, she had links to some resources including the AN Associaton on her site, and mentioned the forums there a couple times, and I clicked to the ANA site to have a look. I think it’s a pretty good site, but I was still thinking to myself that ok, some people may need peer support, but I will just heal here and get on with my life.

Then, the very next day, I woke up crying with desperation and frustration, and started the day off by googling Mark Ruffalo a bit. I had noticed on the ANA site, that he, too, is one of *us*. As little as I still wanted to be part of that us, still thinking that I’ll just make it here on my own, my own way. Which is of course the way, my own way, as we each have our own way, but I didn’t want to recognize that I would be a patient for the rest of my life. In a way.

I also found this Finnish guy, Janne’s blog and his post about his AN experience. I read through that, read the comments, and realized there’s a lot of us, and that it may well be worth it to share experiences. I started to write mine in my Healing Diary page, too, and left a comment in the blog. The comments there are hardly a group or any kind of society of Finnish AN people. Not a discussion really, though interesting to read through.

Slowly I started to warm up to the idea of joining a support group in order to talk with others who have gone through and are undergoing similar things as I am. For like it or not, this seems to be life altering process, a long one, with possibilities of all sorts of complications and this and that. And want it or not, I am an AN patient for the rest of my life. Especially since there still is a bit of the tumor left in my head anyway, and that requires monitoring and with any crappy luck, another treatment of some sort.

At first, I ventured back to the ANA site, looking for their forum. I almost signed up, but then decided against. The forum seemed a bit too organized to my liking. I didn’t have any questions to ask, I simply wanted to find other people like me. So I thought about Facebook, and searched for acoustic neuroma groups there. Ia found two that I asked to join: the Acoustic Neuroma (tumor survivers) and the Acoustic Neuroma Association groups.

Just like me, there are many who belong to both groups. And both groups seem to be great :) There are active people who seem to genuinely care and support each other, share experiences and positive thoughts as we all struggle with different issues in our quest for our own New Normal – and some more or less are there already.

We all have our own story, our own issues, but we all share one thing: we have or have had an acoustic neuroma tumor. Most have had it treated in some way, some have facial palsy, some live with unrelenting pain, some with fatigue, some can work normally, some not. Most (if not all) of us have SSD – single sided deafness. That alone is a big factor in the New Normal.

One of the things I love about those groups is that the conversations can eventually end up being abut almost anything. It can start with a question about driving, or flying or hearing aids or what ever, and end up being about the Aurora Borealis of Lapland or sunsets at the Bahamas. Anything! Because the life of us is not only AN stuff either.

So, through some amount of sneer and resistance, I finally realized that I, too, not only need but even crave for some peer support. I hope, that I can make it through the headaches and fatigue and all to a relatively normal life (of an SSD), being able to work and do stuff with the daughters and all that. Find my New Normal a decent one. And live and laugh and cry with others like me on my way.


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