Thanks Suzy.
I just had surgery on my 2rd avm last year. But my 2nd one gave me all the problems. I’m half blind so I can’t drive. I feel like I’m bothering people when I ask for a ride but no one likes me on public transportation bc my avm could rupture. However, I went through the same thing, the problem people aren’t really sure how to help - so they do what seems right. It’s like a store clerk yelling after the man says he’s deaf. Some ppl hear brain injury they automatically think caveman. On the otherwise, they a human being functioning so they don’t understand how the brain injury really affects us. It’s like we need to walk around with instruction manuals and a shirt that says “you can’t see my injury” so some people will get it. The biggest thing I have learned is that we have highs and lows. You will feel overwhelmed bc even your family can’t fully understand your new place in life. My pissed me odd bc I never learned to drive and I never will. So he says to me “I wouldn’t know what I would do if I couldnt delay basketball anymore” what he still doesn’t get that is the pain from never even learning before the opportunity was taken away.
That is hilarious!!!
By the way we our surgery the same day back in 09. Or maybe I was the day before.
Ok i had to check to see if i answered you already. Didn't see my name, so I think I 'm ok. I am not what I was before the operation, seizures, etc. I am in the same body with some of the same memories, but I had to relearn how to do a computer, chemistry, and all kinds of stuff. But, I have been doing ok. That is all I can do. So you can do ok and the others will learn to deal with it.
Anita, I think mine was on the 8th too. I'm sure I put the wrong date in the first time! lol.
mmm...pie.
Seriously, Lesley - I'm queen of frustration. Just gives you a greater appreciation for the good times.
I go crazy to when people talk to me like I’m retarded. Yes I had brain surgery and sometimes words just take a minute to come to me, but I still am the same person I was before.
Hi Lesley,
I don't think others can truly understand, so on some level, we all have this as an on-going frustration. It's always going to be frustrating, so unfortunately we all kind of have to learn to be very 'zen' about what others do.
I just think getting to acceptance of 'where you are' while still striving for the on-going improvements is a REALLY COOL place to be. Sounds like you're there, and maybe you're going to help others in your life see how good just being comfortable with who you are is. Everyone, on some level, struggles with that in their life.
Plus, who else gets to have such joy when the little moments of progress happen. It really is a ultra-cool, impossible to describe moments we've seen in our journey. I LOVE seeing others reach their goals on this site, and it's fun to share their joy, just a little.
We could have our own little sub-group. I'm technically just visiting my parents (around the same age), and just after one month, I'm sure that there's plenty of frustration on both sides.
I'll edit my gripes since they are on this site sometimes, but I can definitely relate.
I'm just trying to focus on the positive until some kind of a miracle happens.
...and I can rattle off lobes of the brain due to reading one too many brain articles and looking at one too many brain diagrams.
Someone just told me that he had a brain tumor in a certain area of the brain - I said "Oh, in the occipital lobe?" like it was a no-brainer (no punn intended.) and everyday conversation to speak of the brain and it's different parts.
In summary, I'm really not supposed to know this stuff nor do I want to spend my energy on talking about this - I just need a mind-reader =)
Sub group hmmm (ok I'm not sure how it would help others but ok)... We can say the frustrated 40 somethings club... or something like that. Wait that is too exclusive. Great thought though. The Dysfunctional Family club? No that will only offend someone. Ideas anyone? Something about being frustrated and not being taken for granted. I got it! AVM survivors!! Wait, that's already taken... :J
Here Here ! After my husband surgery we posted the following so everyone put themselves in check and understood his Brain was Healing and this maybe forever..Hope this link helps not just you but love ones around you. Here is the link: