Does this register with anyone? How did you manage to re-establish your identity post avm brain surgery

Hi guys,

Something has been puzzling me lately and I thought I’d share it in case …

When my avm burst and was operated on 20 years ago, my family didn’t know how to manage my new situation as my difficulties are invisible. (short term memory, and horrendous mood swings when I was under pressure/over tired which was 75% of the time.)

They encouraged me to do, what were, realistically the wrong things - work full time, go to uni. I hope this helps someone out there as I feel I’m rambling. (Sorry) Many many many times I was ill with seizures that would take a month to recover from (I’d lose my sight, my speech, have agonising migraines terrifying halucinations, be unable to find the bathroom etc (messed up spatial awareness), and would slowly recover, the seizures also affected my perception of my body which would feel alien, I’m sure someone out there gets what I’m on about!). Maybe it’s cos I’m old enough to have kids that i’m thinking about this, but you guys know how painful a brain avm and major seizures are.

Once recovered, I’d go back to ‘normality’ (work or study plus a social life) and, inevitably be ill again and turn ‘evil’ - (not coping and being ill). I don’t understand how a parent can call their offspring ‘evil’ when they are actually not coping.

They didn’t (or me) recognise that trying to be ‘normal’ or ’ doing what everyone does at your age’ was making me ill. Even though I’m an adult now, I don’t get how ‘parents’ cld be so stupid? Were they trying to make me the same as all their mates kids?
What was going on?

It has taken 20 years for me to find a life that suits. and it is so far from the life my parents encouraged me to live - ‘everyone works, everyone goes to uni, everyone lives in a city’ . I know what I have is nothing compared to others but was wondering if anyone had any similar experiences?

I guess I’m saying, post avm look after yourself particularly if your family can’t.
flower
x

I can empathize Flower, although my family was and is amazing! You’ve got to understand though that 20 years ago there was much less known about AVMs than there is now, and this condition is still mysterious to many. Your family probably didn’t know how to help you recover. They most likely were not given a handbook on how to handle a brain injured family member. They were probably just doing what they thought was best for you, without really understanding how we can feel sometimes. I understand you may feel animosity towards them, but maybe cut them some slack. Make them understand that the life you lead now, although not what they expected, is pretty amazing. Especially after suffering such a devastating injury.

HI, GLAD U POSTED, I AGREE WITH TRISH, NOT A LOT WAS KNOWN ABOUT AVM, 20YRS AGO AND STILL NOT ALOT. BUT THANK GOD U ALIVE AND STILL HAVE LIFE IN YOU. TAKE CARE OF U AND ENJOY YOUR LIFE, EVEN IF U HAVE TO FIND NEW FRIENDS THAT WILL MAYBE UNDERSTAND. GOD BLESS

I’m in the midst of trying to do this (re-establish identity and independence) and I find that my family members aren’t too ‘on board with’/happy about it; however, it’s MY life (not there’s). I do not wish to offend them but again, it’s MY life. Any suggestions on how to handle family members?

Unfortunately there is a great lack of understanding about brain damage, especially in the general population. There is a great deal of "she looks fine, she sounds fine, so she must be fine. Despite attempting to educate, a lot of people cannot/or don’t want to understand. Some parents (elder generation) feel great guilt, that it is all their fault (as it is there at birth). I am lucky to have a family that “listens” so when I explained (and still do) about the various issues such as the different kinds of seizures I have and exactly what happens, the memory problems (according to my brain, some things never happened, short term memory loss as if someone has pulled out a part of a file and in a few weeks may or may not put it back in and then also just words themselves which drives me crazy. I was on a trip with one of my sisters for 10 days and I would ask her at least once an hour-what is the name of that colour again? Periwinkle Laine!!), loss of cognitive abilities and the list goes on. Outside the family it is a different issue all together sometimes and is frustrating. They may have that inability of perception in their lives period. I am rambling on now and could go on and on. It is none of my business, but even if you have a decent relationship with your family, you could start writng it all down in detail-about how things affected you, what exactly happened during and after seizures, etc. etc.-up to and including how your choices for your present life have impacted and helped you to be where is best for you-physically and mentally. When you have that completed, it is then your choice if you want to share that with them. It certainly won’t change the past but may cleanse the soul and create understanding. I really wish you the best and if you want to talk at all, just click on my puppy’s sweet face, I’m around.