Friday, April 20, 2012

Life is a holy moment, a brief flash of sentience in the sacred abyss.

My lovely friend on Facebook has this as her status currently and it sparked off in me a need to fill in some of the bits I have left out of the post op story. My first post op blog post was 6 weeks post op when I had just discovered I had memory problems and it was quite a shock.

When I first came home, and I say came home because I don’t remember a great deal of the time in Sydney or the trip home, I was quite terrified. I felt disconnected from myself. I knew it was my body and my life but I didn’t feel I was “in” it. I was also afraid to be “too” anything. I had remembered my GP telling my husband that if I was depressed post op to bring me straight in to see her and she’d put me on antidepressants straight away because it was most likely a sign of ABI (Acquired Brain Injury). Having spent some years suffering from severe depression prior to my brain blob, the idea of being in that antidepressant induced flat cotton woolly haze was something I dreaded. So I was trying to be very careful with my reactions to everything. Don’t be too happy, don’t be too sad, try and stay fairly neutral and level as much as possible.

That’s quite a feat when you have a holey memory; feel completely disconnected from yourself and just a little bit terrified by everything. Of course I dared not express my terror, or disconnected feelings for fear of being medicated, or worse, what ever worse was. My perception of reality was not the same as everyone else. Things I believed to be one way would turn out to be otherwise and the world as I knew it would turn upside down. It was a bit like being Alice in Wonderland but a whole lot more frightening. I relied 100% on my husband for my basis for reality. I needed him to be consistent all the time or my worlds would quite literally fall apart around me.

One evening over dinner, before he was aware of the disconnectedness and how far it extended, he joked with our son that I was not actually here and still in surgery and hadn’t woken up yet. I ended up in tears because I couldn’t tell if I was actually asleep dreaming my life and the things that had happened since surgery or if he was joking. He hadn’t done in maliciously it was just him joking around but because I had no real basis for reality it was alarming for me. I then had to tell him what was going on for me and how I just couldn’t tell what was real and what was my brain filling in gaps.

After brain surgery you spend a lot of time sleeping. Sleep is your body’s way of allowing the brain to recover so, after having a hole drilled in your skull and then through your brain to reach the absolute middle to remove a tumour, there is a lot of healing to do and a lot of sleeping required. Consequently your brain will do funny things like fill in gaps with what it thinks may have happened feasible or not. I had remembered a conversation that Charlie had with another patient and he said something that he absolutely wouldn’t have said, that was my first clue that something was a little odd.

Reality and our place in it is such a very fragile thing. I have had great difficulty trying to express any of this up to this point and I am still struggling with it now. Writing this is mentally and emotionally draining, I want to throw my hands in the air and leave it another few months. I will update it later or make another post down the track if I really feel the need to correct or update this one, but it is time this was said and expressed.

There is more to the recovery process that I didn’t post in the earlier posts for fear of upsetting people or unsettling them but the reality is that brain surgery IS upsetting ad unsettling. It’s not a walk in the park and it IS hard to recover from. I’m not complaining though, being here without the tumour, without the pain, without sudden death hanging over my head is the most amazing blessing! I didn’t dare to hope for so much.

Oh! In the end I was classified as having ABI anyway, no antidepressants required..... worried about nothing ....... Brains are fun no?