Saturday, September 29, 2012

Brain Surgery and Memory

Continuing on the Brain tumour, and Brain surgery theme. I thought I would share some of the things I experienced very early on in my recovery. I lost my memory and a lot of the "automatic" things I used to be able to do. I can not sew without and pattern and detailed step by step instructions. I had to reteach myself how to knit. I had to relearn my camera and my photography. I have had to and continue to relearn my life, where I came from, where I was going and what I was interested in. It has been very challenging at times
This is something I wrote for my friends and family a month after my brain surgery 

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, 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

Just under 6 months later I wrote the following: 

I'm now 6 and a half months post op roughly. My memory is improving. There are still some gaping holes and things that are just not there. More recently I went to an event and there were people there I could not remember. I recognised some but could not remember names or matched up incorrect names. Others I thought looked familiar and wrote off to looking like someone else when in fact they were people I had known for many years. I found it VERY upsetting and disturbing.I am feeling much better than I have in a long time but I am still not "better". Please forgive me if I am still not up to speed and please let me know if I have forgotten something I was supposed to be doing. I'm enjoying my new life :) 

After that event, if I met someone I was supposed to know and didn't have memory of them I would say 

"It is lovely to meet you again. Please don't be offended that I don't remember who you are, I had brain surgery and my memory was damaged"

I was pretty upset and frustrated at not being able to remember people or figure out where the "fit" or where they were from (Which group of friends, social group etc)  People are and have always been very important to me. Apart from realising I had lost my memory this was one of the most emotionally difficult periods I went through. I still have people I don't quite remember or can;t quite place but generally if i start asking questions about where I "think" they may fit, someone will fill me in on the details I have missed.

I am not so disturbed by not remembering people now, I look at it as getting to know them all over again with a clean slate. In some cases it is very much like meeting them for the first time. A massive thank you to my husband for keeping me together when I was falling apart over not remembering. A massive thank you to Alonya Cullinan for helping me to remember some of my old SCA Friends and reintroducing them to me.

There is a bit more on some of the scarier parts of my early days at home posted here at a previous post 

This has by no means been and easy journey. I am very thankful for the incredible support of my family and friends around the globe. While I may look fine on the outside, there are things on the inside which are still healing. I'm doing a lot better now but sometimes it can be overwhelming.

I am not the same person I was when I was at school, I am not the same person I was when my children were small (my youngest son doesn't remember me before I was sick), I'm not the same person I was when I was ill for so many years. I am the new version of me and doing my best to be the best version of me I can be.