Tuesday, September 17, 2013

Things I have only just realised 2 years and 7 months after brain surgery

Two years 7 months has passed since I had that hole drilled in my skull, poked into my brain to the middle, tumour removed, big bleed and survived the whole thing and was discharged within 24 hours. That’s kind of a big deal.

Again, I’d like to thank all of you who have taken the time to wipe my tears, and listen to my rants over the last few weeks. Especially HUGE thank you to my wonderful husband +Kim Robertson  for helping me through it especially coming and backing me up yesterday.

I have realised over the last few weeks that brain surgery and brain tumours are a big deal. Well I already knew that part. I have realised that the big deal also applies to me. I had a tumour trying its best to knock me off and brain surgery which saved my life. I know you are probably reading this and thinking “how can you not have figured that out?” Fact is it hadn’t really sunk in properly until now.

So what was it that kicked off this spark of understanding? I had a bit of a “wobbly” at school. It scared me half to death and I didn’t know what to do. Should I sit there and hope it would stop/go away? Should I leave early and catch the bus home? What if something happened on the bus? Should I catch a taxi home? What if something happened while I was at home on my own? What if it was a really bad something? Is it fair for Mr 16 to come home to something awful? Should I ask one of my teachers to call an ambulance? What if it was just a random nothing?

Where did all this come from? For eight years I suffered such extreme pain that I was taken to the hospital vomiting and barely comprehensible. The ER staff would treat me like I was either faking it or seeking drugs. After a while I just stopped going, when you get blown off with “take some paracetamol and go home” it really doesn’t inspire you to go back no matter how healthy, or more to the point unhealthy, you feel.
So I have avoided hospitals and ambulance trips like the plague even since surgery. After repeated conversations with certain family members and a friend who is an ER nurse, I FINALLY got it. Brain surgery/tumours are a really big deal. If there is something going on with your head you can’t afford to mess about with it, it may just kill you. If there is ANY brain weirdness… call an ambulance, do not pass go, do not collect $200. They WILL treat you seriously, VERY seriously. If it turns out to be nothing YAY and they won’t mind at all. If it turns out to be a something, chances are that you got it early enough to do something about it. I now understand. I have promised to go to the hospital if I need to!

Part of the funk I have been in is that I have not had my camera with me and been taking photos daily for the last eight months. It’s like suffocating really. I have lost inspiration and am slowly getting it back. Yesterday I discovered that my favourite lens has died. It has had a good 3+ years of solid daily use so I guess it has put in a good lot of work. I was however quite disappointing.

I have had to face up to and accept that I do have an acquired brain injury. I do occasionally need help and it is ok to ask for it. I did that earlier this term at school when my vision failed. I saw the disability officer and we found a solution to work around the problem. I now have my fabulous new glasses and a few other bits so I can see now. The vision failing is part of the brain injury. The path the surgery took through my brain has damaged the part that switches off the signal from the eye with the damage. Consequently they fight for focus constantly.

I have had a doubt of depression through this. I had a meltdown one afternoon after a lot of tiny things had gone wrong (ABI again) I cried my heart out all afternoon and watched myself spiral really quickly down into that pit of despair. I have found some things at school this term challenging. One thing was lack of feedback. If I have done something incorrectly I need feedback so I can do it correctly next time. I have also had a difficult teacher. This all reached a head last week and I was going to go and quit my last term. I felt like I had no right to be there and that I was just reaching too high.

Pity party over. I am going to continue to do what I need to in order to get where I want to be doing what I want to do. It may take longer than I had planned, I may need to rearrange things so that I have some more time for my brain to have time out, but I’ll give it my best shot. At the end of the day, if I don’t get there, I know that I have given it my best and will have other options open to me.

Last month we headed to Sydney for the Colo(u)r Run which was raising funds for the Cure for Life Foundation. This month, this weekend in fact, I am flying to Melbourne for the week. While I am there, my beautiful friend +Charles Strebor  will be having his beard dyed purple as he reached his $1000 goal fund raising for Cure for Life. I am looking forward to spending time with +Al Christensen  and meeting the amazing Melbourne Gplusers. I will definitely get my inspiration back hanging out with them. In fact, I have my own Melbourne photowalk! I’m feeling mighty special J

I hope you are all well and Happy

P.S. Things get better; sometimes it is just a perspective issue.