Firstly I’d like to thank all of you who have taken the time to understand, help, cajole sympathies, empathise, kick my butt, wipe my tears, and listen to my rants and all the other things that have happened in the last two and a half years. Especially HUGE thank you to my wonderful husband for everything, and I mean everything he has endured. Life with a seriously ill person is not an easy one. It can be demoralising, depressing, heartbreaking and hard.
It is now 2 and half years since surgery to fix my brain and start my new life. Right at the beginning of this new life I posted –
I tell you the same thing more than once,
I forget who you are between games and life
I forget your Birthday, anniversary, wedding, other significant day
I forget to call you back, email you, and do something I said I would do or just do it later than I said I would do something that upsets you
Please let me know, and please try to remember that I have had brain surgery. My memory is a bit all over the place. I forget things, if/when I remember things later I then try to make up for what I have forgotten, some things I just don’t remember at all. It isn’t an excuse; it's just the way things are. I am hoping that things will continue to improve and with it my memory. Kim tells me it was worse before and that I am just become more aware of the holes now. It is very frustrating.
I hope you will understand’
Things have improved dramatically since then. I forget less. There are still things I don’t remember but that is okay. Everyone forgets things, people, and events. It is normal. Not just normal for brain surgery patients or people with acquired brain injury but for every single person. I have learned a lot of things and come to relax a lot more about things that used to really upset me.
I no longer get worked up about
• Not remembering people
• Forgetting dates
• Forgetting how to do things
• Not scoring the highest possible marks
• Things not going to plan (Okay I’m still working on that one in some instances)
• Health. I can be fixed or it can’t. It is really that simple
• Feeling bad
I have in the last few weeks experienced a few things that rocked my little world and my self-confidence. It is in part that I had forgotten that I had made an agreement with myself and understood that things may not always work out the way I expect or hope they will. Things will happen in whatever way they do. It may sound silly but the first was wrapped up in study and more importantly pure maths. I need the subject to get into a Bachelor of Biomedical Science. I could get into a Bachelor of Science without it but would have to do it anyway to switch sideways to the Biomed. That shattered my world a bit. I was studying pure maths at the beginning of the year. It was challenging but I was enjoying it and doing ok. I had a bout of brain melt down and had to drop the subject because I was too far behind when I could get back to classes. Finding out that I would had to do it either way frightened me half to death because all I could think of was how ‘hard’ it had been at the beginning of the year. Added to that is that instead of 12 months to cover the 3 units (it used to be 18 months) in 2014 pure maths will be compressed into 6 months with the same content as the original course. I know that I cannot at this point in my life keep up with the subject at that pace.
This little world rocker was followed (minutes later) by a rather confusing email from one of my teachers telling me that I had scored honours for the pieces of assessment I had submitted but the conclusion needed to be rewritten as it was not correct. Colour me confused. I have messed up the conclusion but have score honours? I was utterly uninspired to begin my essay based on that piece of assessment. I then received another email from another teacher telling me another piece of assessment had scored 0 with a maximum score of 0 a minimum score of 0 and an average score of 0 followed up with ‘good work Julia’ I am really getting confused now! I have since received another email from a teacher who isn’t one of mine telling me that part two of the maths assignment is up on the website. I was not aware of any assignment. Exam, yes. Assignment, no. The beginning of this episode of educational confusion threw me into a depression which, while it only lasted a few days, was pretty awful.
I stopped looking at science degrees and started looking at degrees in heath and psychology. I looked at studying a diploma of business, business admin or accounting. I looked through the job pages at office work. I smacked myself around the head a bit (metaphorically) and realised that none of these things are going to get me where I ultimately want to be and that I had made a deal with myself to give it everything I had. Giving in over one little hiccup was not part of the deal. I have decided not to apply to go to University this year. I have sourced a way to study pure maths over the next 12 to 18 months without the added stress of trying to keep up with other subjects. I will, depending on my ability to pass pure maths, apply for University in 2015. If it works out it does, if it doesn’t. It has been suggested that I could do something along the line of neuro-psych or counselling for people with brain tumours or who have had brain surgery.
Another part of my depression was being diagnosed with a tiny cataract which is causing me all kinds of problems with my vision. My brain will not shut off the bad signals from my less functional eye. Consequently my eyes battle for supremacy and focus constantly. By around midday my brain is so exhausted by the battle that it gives up and my sight gets pretty awful. I went to the disability officer and talked to her about it and have come home with a nifty device which will make exams, reading and things much easier on me and give my eyes a bit of help. I registered with disability services last year when I did my dual cert in Business and Business admin and didn’t need to use their services at all. I was quite proud of myself that I didn’t need to ask for extra time or extra help. I had done it all on my own and managed to finish early. This year has been a different story. I have had to ask for help when my brain had its melt down. Now I have had to go and ask for some real physical hands on help. The thing that shattered me was that I haven’t and still don’t see myself as disabled or needing assistance. This one kind of brought it home to me that may be I do and will continue to need help. There is no shame in asking for help.
The second part of this is a bit of a revelation to some of you and for others not so much. I am writing my story. I have decided not to start with the beginning of my brain tumour experience. I am writing about the aftermath, the recovery and the things that can be accomplished that you don’t even know you can. There is a small part at the beginning explaining briefly where the story started. For those of you who have already been bombarded with multiple and unfinished versions, I have reworked it a bit more and will try and get it in to better shape before torturing you further.
This month (August) has been and continues to be quite busy. My brother and I participated in the Brisbane Marathon Running Festival in our wonderful new purple Cure for Life running shirts and our matching hyper tubes. We followed that up the same day with a trip to GreazeFest. I was pretty shattered by the time I got home. I was very lucky and honoured to help celebrate an old school friend’s birthday. I was lucky enough to meet up with a few old school mates there as well. It was just what the doctor ordered to pull me out of the misery I was in. This month sees my beautiful husband and I celebrate our 17th wedding anniversary. We will be spending part of that weekend in Sydney for the Cure for Life Colour Run in Centennial Park. I have been thinking about contacting the head Cure for life office about a position they mentioned at their meeting in Brisbane earlier in the year.
Next month sees me head off to Melbourne to see +Charles Strebor have his beard dyed purple. He raised his goal amount of $1000 for Cure for Life as a part of our international team and we’ll be celebrating with good food, good friends, much purple, photography and joy.
I am feeling more myself all the time, more confident in who I am, what I am and where I fit in the world. I am loving life, learning to roll with the punches more than I was before. I am filled now with a sense of awe at all the possibilities that life can bring. I love my family and friends to death, old and new. There is a big bright world out there and I have a place in it. Life is good!
As I recently read – An optimist is someone who figures that a step backward after a step forward is not the end of the world, it is more like a cha-cha
I hope you are all happy and well