CONFUSION, MEMORY LOSS, OFF BALANCE. Challenged

I know all of this takes time but does any one ever feel like the people you talk to think you are mentally challenged? I just want to scream and say hey I had Brain surgery people ! I have a whole new perspective on looking at life now! I feel sorry for those who don’t understand the way we do…because we are alive to see the difference. I think they are the ones who are challenged because it takes a certain type of person to understand and have patience. I can’t seem to get my thoughts out of my mouth, so they match up? Do you know what I mean? I am always questioning myself? And i never did before I think all the world would look at life with more love and less selfishness if they survived an AVM! And all of you care takers out there …bless you .You are truly Earth Angels! Thank you for letting me sound off !

Donna,

Feel free to sound off on anything you feel like. That is why this forum exists. My own near-death brain hemorrhage has changed my world forever, and as much as I try to stay positive for everyone else around me, my life has permanently changed and will never be the same.

There is so much confusion, depression, and anxiety that comes from such a traumatic experience, it’s overwhelming at times. Few people understand. I think it takes time and a supportive network of family and friends to help work through this, but with time, things will get easier. Just see Liam and his great sense of humor.

–Ben

Well said, Donna! This AVM has made me re-evaluate my life and made me much more grateful for the blessings I’ve been given. The world would be a much better place if everyone learned to look for what’s good and be grateful for it!

And thank you to all our friends and family who take carew of us and/or support us.

Hi Donna
Totally agree. i met my driving instructor yesterday and i mentioned that when i felt better and have strenth back i would be loking to finish my lessons. the ook on his face was a picture. he told me to wait and see how thing go, in other words no way is this freak getting back in my car! his loss as plenty more people out there who’ll take my money Grrr

Hi Donna,
Don’t let people get you down, I as well as having the AVM have CMT, it is a neurological disorder that affects my muscles in my lower arms and legs. I limp pretty badly and have what they call an upside down coke bottle shape to my body. I know how you feel, I also can’t always get everything out the way I want it and get frustrated when I can’t think of something right off the top of my head. I see a lot of people when i walk by them, looking down at my limp and staring. I want to say hey, I’m up here!! I may be a little diabled but I am not stupid or blind!! I think that people are afraid of what they don’t understand and that can make them cruel. I always allowed people’s reactions to bother me and I internalized alot of it. Laim’s idea is kind of cute and a way to acknowledge other people’s stupidity. Something else you could put on the cards is “I’m OK, what’s wrong with you?”

As for a new outlook on life, I think my situation changed my ex-husban the most. When I first found out I had avm I called him, as we were in diffrent cities at the time. That was on Monday; by friday afternoon I was served with divorce papers. He told me that it was just something he couldn’t deal with.

Soon after that we found out that I would need a care taker (that was an understatement); well he was there at every procedure and surgery. He took care of me during the stroke and this cost him a lot of time out of work.

Our divorce was final this past november, and we have never been closer (as friends). He has such a diffrent outlook. He appreciates things like with childlike innocence. Not just with him, but I have noticed that all of my friend grew into diffrent people. It has really been a beautiful thing to watch.

With thoes that don’t know me, if I hear I am so sorry, you poor thing, will your hair grow back? I might scream, loudly.

AMEN DONNA!!! i totally agree with you!! I see it all in a different picture now!!! i dont let things bother me like i use to!!! I actually am grateful that this happen to me!!! I am a better person for it!!!

I was planning on being a software engineer, make lots of money, and living comfortably. Then came the AVM. After being hospitalized for about a month and a half, I had to relearn how to walk, write, even talk. People probably thought I was a lost cause. I know the doctors certainly did. They told me I could try to finish college but I should probably just take what I had and find a simple job. Of course, the Lord says differently! “For I know the plan I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future” Jeremiah 29:11. Through the AVM, Jesus got my attention. I gave up trying to make money and have a “secure” life. Instead, I started school in Dallas, TX, finished my BA in Biblical Studies (Greek included!) and now I’m about 25 hours into my MDiv. The Lord is capable! If there has been anything I could say to anyone feeling depressed or down, or even mentally inept (I feel that way many times), it’s to never give up because Jesus has you on earth for a reason! If we draw breath, it’s because the Lord has given us another day to praise His name! Never despair, place your hope and trust in the Lord!

John 3:16

paul

Thank you Paul,
I agree with you! I know that I am sill of this world because I still have work to do. My faith is strong and I believe the Lord has more for me to do. So thank you , the Lord is the only one i trust.
God Bless, hope all is well with you>>>>>>>>>>>>>

Just an update for you, I got a call from my neurosurgeon that I’m due to have another Gamma Knife surgery in January, because there’s one remaining AVM left to zap. This would be zap number 3 for me. I keep telling my wife I wish they’d just setup a drive through so we could get it done quicker. She told me that’s a bad idea. She’s probably right. Wives tend to be that way. Ah well, God is good and I’m excited. “The testing of your faith produces endurance.” James 1:3

Grace and peace!

Donna DELAVINA said:

Thank you Paul,
I agree with you! I know that I am sill of this world because I still have work to do. My faith is strong and I believe the Lord has more for me to do. So thank you , the Lord is the only one i trust.

God Bless, hope all is well with you>>>>>>>>>>>>>

Best wishes,

Ron, Ks

Amen Paul! Thanks for the encouraging words!

Paul McMonagle said:

Just an update for you, I got a call from my neurosurgeon that I’m due to have another Gamma Knife surgery in January, because there’s one remaining AVM left to zap. This would be zap number 3 for me. I keep telling my wife I wish they’d just setup a drive through so we could get it done quicker. She told me that’s a bad idea. She’s probably right. Wives tend to be that way. Ah well, God is good and I’m excited. “The testing of your faith produces endurance.” James 1:3

Grace and peace!

Donna DELAVINA said:
Thank you Paul,
I agree with you! I know that I am sill of this world because I still have work to do. My faith is strong and I believe the Lord has more for me to do. So thank you , the Lord is the only one i trust.
God Bless, hope all is well with you>>>>>>>>>>>>>

donna,
this is the place to let it all out…i can understand your feelings…my outlook on life has changed because of my journey with my AVM…i can honestly say i am grateful for yhe journey i have travelled as it has changed me in to the person i could have only ever dreamed of being…as hard as it has been to learn to walk again and as far as i still have to go without this challenge i wouldnot be the person i am today