If i hear the phrase “why don’t you Just blah blah blah” one more time I’m gonna scream! I freaking don’t just because I can’t remember how, or because I forgot to why don’t i just scream because I am so frustrated with myself and all of you. Not “you” here My you is my family and friends that still don’t Get the brain injury part of this injury i just don’t wear the other shorts fecause my hand is paralyzed because my stinking motor cortex got zapped nd I cant button my own pants that’s why I just don’t match. I did not plan this whole side excursion in life that’s why I freaking "just don’t blah blah " we don’t need to begin every sentance with that phrase!
yea! I moved back in with my parents at 41!joy!,

Hey there Nicole, I’m the parent of a 15 y/o daughter who has expressed those thoughts to me many, many times. Reading your post made it even more clear to me how frustrated my daughter is with me and our family. I am going to read her your post so she knows she is not alone; not that it makes it any easier, but she will probably look at me and say, “SEE! It’s not just ME!!” I will make every effort to leave her alone the next time I start to say, “Why don’t you just…” Thank you for posting this :slight_smile:


Perhaps a good thing…thank goodness your parents are still with you that they can be there for you? I know it’s rough.

hey! i know your feelin! I hear crap from my family all the time my avm removal cause me to have epilepsy they treat me like a child, and all i ever hear is why do you act like this, cause i have a mood disorder from it and sometimes i almost think i have slpit personalities!! And between depression, anger and sadness and everyone tellin me what to do and not understandin whats actually going on in my half dead brain… sorry your going through this… I will pray for you… I know your pain. .:frowning:

Hi Nicole. You have definitely been through a lot. I for one am glad you survived. There is obviously a reason you are still here…you just have not been allowed to see it yet. We do not know the other lives we touch. Your amazing strength to survive might influence someone else when they fall ill later on in their life. AVMS kill…the fact you are still alive makes you special!

Helen Keller was deaf, dumb and blind and yet her life and what she accomplished has been shining beacon to those who are physically challenged. I know it is hard but you are not done yet. NEVER GIVE UP!!!

I know exactly what you mean!! I’ve been looking for a job, trying to recuperate and trying to do a million other things and everybody’s like “why don’t you just do this or that” and they get very irritated because I haven’t done this or that and I get irritated because I simply didn’t think of this or that!!! My brain no work good anymore, hulloooo people!!! Hang in there, it’s got to get better, right??

I got a chuckle out of this Nicole, thanks! Yes, the simple things that we can no longer do, some people just don’t understand. And because we look normal, they assume we should just be able to blah blah blah…I get it and I understand your frustration. I’m 41 also and can’t be left alone for too long and my kids sometimes treat me like the kid. It still beats the alternative I say!

I get your frustration. I’m on the other side of it. I get frustrated having to help my son button his shorts,shirts and tie his shoes because he’s too stubborn to wear the jersey shorts,t-shirts and velcro tennis shoes we got him. He always wants to wear the harder clothes when his hands don’t want to work. I just love it when I have to get him ready for the day because he “forgets” or can’t get his hands to remember how to do stuff on bad days. I really shouldn’t complain. I know how hard it is when your hands won’t work. When my tendonitis flares up, I can’t even hold a fork to feed myself. It bites the big one. Thanks for the reminder that he doesn’t always work right and he’s probably more frustrated than me about having to have his mom get him dressed.

Thank You everyone who replied to my rant! It helps to know I am not alone, even though I know deep down my family is only trying to help and I should feel blessed they have taken me and my 6 children into thier home when my husband cast us out because he "can’t do This anymore… i will try to be more patient and appreciate all I have instead of bemoaning all I’ve lost I owe that to my children at the very least. Thanks again all my AVM friends for your support and well wishes! this is a good place!
feeling better,
Nicole in Ohio now!

Hey nicole

i can relate to this totally, everybody here, family, friends, people in the village think because i look so well that im doing fine, thats total crap, i still feel like a child in my head, frustrated, forgetful, cant organize my thoughts and it all really really gets me down, i just hope it gets better because i don’t wanna live like this forever.
I look good but don’t feel it, i still also struggle with buttons, zips and just stupid things like opening envelopes, i cant do it with my left hand, or trying to hang out washing, most of the time i just wanna rip the washing line out of the ground.

im close to living with my parents also


I feel your pain. Myself im aphasic - every time i know that at some point in the telephone, i will not be able to store correct information. Let alone numbers. Frustration is beyone belief sometimes, very down after.

But…i figure, why bother getting so upset? What will it achieve? Not much, so i just get on with it. Myself i remember better things in life; and i feel better…well most of the time lol

I feel your pain too. I was keepings lists of things to do and then i would lose the list. Then I would start a new one and would lose that too. When a i find a list or two, they all have different stuff on them lol. My kids have always though i was crazy so i am somewhat happy to be living up to expectations. Keep on keeping on. It will get better.

Thanks Steve! That’s my standard reply to issurs now “I have a head injury” or maybe I am just crazy, And everyone says… “OOhhhhhhh” don’t say that! But it’s ok , there’s a certain peace in letting go of all the expectations!I keep figuring , when you’re down this low the only direction is UP!!!
LOL I love your list story!

I feel ya there. Even though we caught mine before it ruptured (had an embo and craniotomy back in October) I still find people in the “real world” just don’t get it. I have lost SO many friends and ended up with people being nasty to me because I got confused or my words mixed up. People are SO unforgiving, and I am so sorry you are feeling this way. I think a LOT of us understand this. And even my parents whom I live with forget and say “Oh there is a place you can work” when I am currently fighting for Social Security Disability…just try and understand a little that they are human and it’s a HARD concept to wrap anyone’s mind around. That the person they have known their entire life is different. as well as for you being who you are for a long time then having everything change. It’s a rough thing. Maybe talk to them about it a little more?

Know the feeling, girl. And afterwards, I think about this & apply it to those people (which brings a slight chuckle or smile to my face):

Feeling ya, but I am sure they really do mean well, I am having a few problems mentally myself at the moment so I do really know what you are saying.
Try to stay positive, meditate and if that doesn’t work count lol

Kia Kaha Taiki


you know what i get as well as that phrase that p*sses me off just as much? “If i were u, i would blah blah blah” or “Ur arm is hanging, pick it up!” or “y cant u just bend ur knee when u walk?” or “mayb if u tried (enter lame thing here) u wouldnt have such a hard time walking, or sitting down, or getting up, or whatever.” i feel ur pain, trust me.
*currently forced proud wearer of sweatpants that r never pulled up all the way on left side (left sided paralysis)

Thanks for the reply, it actually made me chuckle! Which is great because it’s hard to find much f-ing humor in my situation1 My left ass is always hanging out of my shorts too-- reminds me of being in Jr. High when someone would walk out of the ladies room with a piece of toilet paper stuck to the bottom of thier shoe! however its just So Not as funny at 40+ as it was at 14! My paralysis is on the left too. At least I can rejoice at being righty-- there are some small miricles?
Thanks for the humor-maybe its not funny, neither was the toilet paper on the shoe at 14!
Left hemiparysis,

Nicole, brain injuries are difficult for anybody to understand. I can tell you from experience that few people understand my daughter’s brain injuries and the resulting deficits. The people who do are therapists, neuropsychologists and your local BI association. You’re not crazy. You do have a brain injury – something that changes your whole life, personality and future. I agree that it’s not fair, but the card we have been dealt. It’s easy to sit and dwell on the negative changes. But it also helps us understand what others may feel and have a much better appreciation for how quickly our lives can dramatically change.

Nicole, I understand your pain and frustration. I just got off the phone with one of my work friends. I told her that I might not be able to have my surgery to remove AVM. Her reply was “well, it must not be very serious then.” arghhhh. I certainly have been lucky to survive two ruptures of my AVM, but you are so right in saying people just do not understand. I truly feel like the pain caused by the people around me is just as bad as the condition itself. Because I look healthy, people I work with (and hopefully will be able to return to work) cannot unerstand why I walk with a cane, or why I have such a hard time keeping on track and organized. My sisters (who do live halfway across the country) have offered no assistance at all, but my BFF who lives in the same town as they has come here to stay with me for a week. It is truly a difficult road we travel, but I just keep telling myself that there is a reason for all things. Best wishes to you, I wish you peace.