Hi Crissy - I appreciate your extra struggles, and I know that your husband does. I think what you mentioned is probably the best lesson I've learned so far...you never know when your time is up...life is short so make each second count and try to have fun and/or be intentional with whatever you're doing...I might have "paraphrased" a bit.
Hi Julie. I was never a fan of the word disabled. I much prefer the term physically or mentally challenged. Helen Keller was deaf and blind and yet she graduated from Radcliffe…wrote books and even more than 40 years after her death she influences millions of people today!! In my opinion… Not too bad for a woman who was physically challenged!
i am tying to handle my disability as much as i can. there r ppl in my life that dont understand the entire package that replaces the loss of one half of ur body. its not just physical, its emotional and.....so much more. some ppl r TOO sympathetic, always trying to factor in ur disability, how to make things "easier". im stubborn like i notice many others on here r too, i prefer to try every thing first before i say, "no, i cant do it." in otherwords i dont want to b babied because of my disability. and then theres the ppl that dont understand anything at all. 1 month after my craniotomy my sis wanted me (i was 6 months preg also) to bring my then 3 yr old son to her daughters' bday party at a lake with her bf's fam who i never met and a handful of kids between the ages of 3 and 8.just remembering the invite still tires me out. i ducked out last minute. i tried to work up the energy to go with a smile but that just made me more tired...omg i was always so tired just after the craniotomy. point being, my sis didnt understand at all...we still dont talk, its been since june of 11. so yeah, im having a bit of a hard time with ppl understanding and/or accepting my disability lol.
Hey angelaok - you wrote, "I hate the type of people I liked before." - I really struggle sometimes to find the good parts in a person - many people from before seem to take a lot for granted.
Also, another thing that stuck out for me is what you wrote, "I AM NOT THE SAME ANGELA AS BEFORE." Totally get that.
And, finally, "What others think about the new you???...this is about you finding out who you are." I have done a lot of soul-searching on that one - still not very conclusive on the matter yet. Hopefully, I will be "enlightened" sometime soon.
“All you can change is yourself, but sometimes that changes everything!”
—Gary W. Goldstein
Amen to that, sister.
ah, the quaint "entire package" - not.
regarding the stubborness thing, I've got "some" of that in my DNA. I know there are the down-sides to it, but I figure that it was stubborness which helped me when I needed it most.
now, if I can just accept others' help without thinking that they're feeling sorry for me (and a cajillion other things), I'll be all set.
Also, recognizing people - I swear that some people's reactions are something out of a sci-fi movie - it's not like I have any control over recognizing someone - either I do or I don't - it's cliche but - it is what it is.
I sure wish there were more information out there about brain trauma. Unfortunately, my AVM was on the right side of the brain, so my emotions are all times 10. It hit the emotions and personality side of my brain hardest. When it hits the left side, it's more likely the speech and that's more noticible. So no one understands when I freak out over nothing. Or when I'm overjoyed at the smallest things. But to heck with them if they can't take a joke, right??? I'm gonna have fun with my second chance, even if I can't control my emotions sometimes. Hang in there...
Hi again. I think it must be so much harder to have an AVM at your age than at the age of 9 years. I never wondered or wished anything to be different. But a number of years ago, it came to me that I would have most likely been a different person in some ways. I was wishing I could have known that person, but I can't and I am happy to have survived.
That's a great attitude. Yes, I was 49 when my AVM bled, and I was managing 300 people at work. I had a very high IQ and could sing opera. Now I can't drive, I don't know if I can work, and my singing voice is very weak (I colapsed a lung when my AVM bled). But I'm becoming the new person that I am, and I'm actually happier - doing things that are important to me. I spend more time in nature, travel more and never go to bed without a kiss from my husband. I have learned to appreciate life, even if it isn't as easy as it was. Glad to hear you are happy to be alive - and that will make you a special person as you grow up. You can accomplish anything! :-)
My wife, the one with the AVM, has not fully accepted the fact, no. However, I love her for her fighting spirit. It's also one of the most annoying things about her. :D
Kat, your comments are close to what I've been going through for twenty years. A minor difference is I'm a guy. But, my wife and family say I could do it all if I just try harder. They all think it ended with the operation. I'm glad I can talk to you people who know that the problems have not gone away. I lost my memory and I can't finish things. I can't organize things and my brain just DOESN'T Work very good. There are no external signs, so they didn't understand. So, I'm teaching them a little at a time. Its getting a little better.
I know the one skill I have left is I can be stubborn.
I concur. Well said Kim. My wish is that everyone gets this "insight". Wishing you well. :) Unconditional love... what a concept... Guess that's why I love dogs...they seem to get it.
I believe that their avoidance is just discomfort, but it does sadden me that I make people uncomfortable because of how I was while recovering from surgery. Most of them do know what I had been through, but I guess it's hard for someone who has not been through the same thing I had to understand completely.
I get stares from both kids and adults, too. I would like for them to ask me what my deal is, sometimes. This has made me very self-conscious at times.When you get stares from others, how do you deal with it internally?
Thankfully, I am doing much better as of late. When I get discouraged, and want to return to how I was before the AVM, I try to remember how much I've grown since then, and the fact that I am still able to live my life in spite of my disabilities. I've been table to get to work and school, and be independent. In spite of my memory problems, and intellectual limitations, I've still been able to excel in school and maintain my 3.5 GPA (it does take a lot of hard work though, I seems as though I have to work twice as hard). I'm almost content. It is taking a lot of work to completely accept the new me...but we are all works in progress right? :-)
i was first disgnosed with AVM when i wa 16. i have an invisible time bomb but i never let that stop me from doing anything. i mean physically i look fine, went to uni got a degree. so i never thought of my self as disabled. unfortunatelty that all change when my AVM ruptured 2years ago and end up with a stroke like complications.. ONLYnow i can really appreciate what i once had. my only advice is dont say ' i will do that do that tomorrow' because tomorrow might never comes.my mum always told me that there are plenty of people far woarst than me.in a weird way i feel better.if you c are able walk,use both of your hands then you are a lot more able than me.. people with aavm are not disable just have a time bomb,like the next man with a blocked artery and may have a heart attack anytime.i apologise if i have offend you in anyway with my reply please dont think that you are disable you are special you are 1 in a million since my my dr told me thst at least 1 out of a million per is affected with avm.this is how i see it.
Hi Leslye - Regarding school issues, I did a Grad. Assistshp. at a college in a department for students with disabilities - physical or otherwise - if you're not involved in a program like that, it might help a little - no doubt, there will still be challenges, but the department is there to assist what you might need - e.g. white noise machine in a secluded room for tests, a braille read-out printer, books or other reading material on audio, Dragon Dictate.
Regarding the pre-judgements of others, I have an older lady (90-something years old) down the hall from me who has referred to me as "The Handicapped Girl." I chalk it up to ignorance (considering how it used to be that people with disabilities were just put away in the attic or whatever), but my main "technique" is to avoid those kind of people (not really a technique, I know), consider the source, and not accept that as my reality (not letting the effects of my AVM rupture define my other abilities/what I can still do).
It's definitely an everyday struggle, though...just a cherry on top! Work in progress-you bet.
it seemed much easier from now anyway.
I also hold the beliefs that "what doesn't kill you, only makes you stronger" and "it could always be worse".
Hi Julie. In answer to your question, I most certainly am. I think the biggest problem is that on the outside I look ok but from what everyone tells me I look tired all the time. They can't feel or see my pain (constant in head and back) and unless it heppens to them I don't think they can fully grasp it. I hope this message finds you well and Happy New Year to you.