This week has been a busy one spent with my wonderful grandchildren while they’ve enjoyed school holidays and I’ve fought valiantly ‘the cold’ which wiped me out on Wednesday and has given me the gift of the need of extra sleep, I’m not one to push away extra sleep so that was enjoyed.
I had the joy this week of going for a lovely lunch with a lovely bunch of ladies who have all had meningioma brain tumours, we are all at different stages and all have different symptoms but as we chatted and laughed we realised that many of our symptoms were and still are the same, symptoms that we think are just parts of stuff that we don’t really acknowledge, like the flickering eye, the terrible hearing and memory and the extreme fatigue, how we make our friends and family repeat the same thing a hundred times because we forgot or forgot to focus on the answer the first 99 times. The fear of what the future is going to bring, how the majority of us struggle with loud noises and large groups with loads of chatter. How so many people when they meet us tell us how wonderful we look and for me many of those are greeted with my standard reply of” thankyou that takes a lot of make up cos most of the time I feel like crap”. How so many people think that because they can’t actually see our condition they think we’re fine and well, it’s a frustration. We laughed at the idea of bandaging our heads or wearing a sign/tattoo, or introducing ourselves with a greeting of I’ve got brain injury, I will probably forget your name, our conversation and maybe even meeting you at all, I might have a seizure or forget how to talk to you but all is well 🙂
That all sounds a bit miserable but I promise you it isn’t because being amongst a bunch of people going through exactly the same as me meant they knew everything I felt and we could laugh at things other people would find terrible and not in the least bit funny. There was a lady who was a shining light because she is almost 15 years post surgery and she is wonderful, I think I will keep her as a friend because she is my inspiration that life goes on and one day I will find 75% of the person I used to be. We did all decide that we are not the same person we used to be and we miss that person in the same way as you miss a passed loved one, it’s almost like a bereavement. I celebrate a couple of dates that nobody else (except my brother) remembers and that is my fathers birthday and the day of losing him, that’s not so much a celebration but a day of remembering the wonderful memories of him, the wonderful father he was and still is because he is still with in in our children and our grandchildren. I wonder if I should add the day of my surgery to these days of rememberance and use this day to look back on the old me, the brave, bolshy me that travelled wherever I wanted to go, was rarely afraid of anything or anyone. I loved that person and I miss her but I know I have to look forward to what is ahead. This ‘thing’ has brought me a new life with amazing inspirational new friends. It’s also brought many of my friends and family, particularly my daughters fear and frustration, the frustration of me forgetting so many things and remembering other things that actually are not right, I think my brain gives me false memories of conversations. Anyone reading this, trust me it’s as bloody annoying for me as it is for you, to not be able to believe what’s right and what’s wrong drives me crazy, literally crazy.
This reads somewhat maudling, but it really isn’t. I want anyone going through their own stuff to spend a little bit of time having ‘their moments’ but then use that to help move you into the new life ahead. Learn when you can, don’t overstretch yourself, learn to say no, have the afternoon nap, accept the help that people want to give you because they offer that out of love whether they are friends, family, neighbours or colleagues and teach them to laugh with you at the ridiculousness of life changes whether they are good or bad. Remember the old you and accept that you will never get that person back, at least not all of him or her and finally learn to love the new you, the new you is going to be with you for a long long time so get used to it.
Thankyou to everyone that is part of my life, thankyou for everything you do for me, thankyou for making me laugh, smile cry and think twice when I say the inappropriate, thankyou for putting up with me when I’m a pain in the arse (this is regular). Thankyou for caring so much that you worry about me constantly and for that I am so sorry.
Let’s all learn to be kind, smile at the stranger in the street, ask the person that doesn’t look 100% if they are OK, they probably are OK but you really never know. Ask the young Mum (or Dad) who looks to be struggling with a screaming toddler if they need a hand holding a bag or the armful or ‘stuff’ that they’re trying to keep hold of. This tiny bit of kindness not only is good for strangers but it’s good for your soul. I can honestly say that I do this almost daily and I don’t care if people think I’m bonkers, because I know that when I asked the lady who tripped in the street if she was ok and we ended up laughing and chatting and going for a cuppa, I made a passing friend and she was lovely, we will both carry that memory even if we never meet again.
This brain tumour has changed me and my kindness and caring person is someone new to me and I like her. I think this person is someone my grandchildren will remember and love, someone they will tell their grandchildren about and that makes me very proud.
Have a great week everyone
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