It has been exactly 1 year and 8 months since my gamma knife surgery and while my life is pretty much back to normal I still don’t feel 100% perfect. I forget things, I repeat myself, I get numbness and pain in my right side etc. I was hanging out with my best friend tonight, and I messed up on something I was trying to remember, and like usual to make a light hearted joke about it I said, “ah sh*t, it’s that damn brain again”. To my surprise, she replied ever so calmly, " you can’t use that excuse anymore… It’s been 2 years now".
I was shocked! I was so shocked that I didn’t say anything back in the moment. I just tucked my tail behind my legs and did absolutely nothing. But now, thinking back, I really wish I had corrected her and educated her on stroke and AVM recovery.
Do you guys suggest I leave it be? Or should I bring this up to her? How do you all handle insensitive people? I would love some insight!
Well, first things first, ONLY AVMER’S GET AMVER"S, This is total ignorance on the part, I deal with this on a daily basis, and this year is my 30 the year post surgery, " forgive them for they do not know" one of my favorite verses, this is a tough question and I don’t really have an answer for you but, know you are not alone, I know how frustrating and hurtful this is but people just really just have no clue what we deal with, sometimes I ignore it, sometimes I give em’ the old, at least I have an excuse, what’s yours ?? I’m not sure what you should do but I do know if you follow your heart it will never fail you, choose your battles and do what you think is best for you, try not to take it personal and if there not willing to listen or understand, how good of a friend are they ?? Best of luck, take care,
Since you say this is your best friend, someone close to you, I think it is important to not brush things under the rug. If you leave it alone, you risk your friend making more uneducated comments in the future. Since she clearly doesn’t understand how strokes/ AVMs effect a person it could lead to resentment on both sides if you don’t nip it in the bud.
Although in your case, you truely aren’t making excuses and your 100% genuine - there are people who do like to use their past or conditions as a sort of free pass for totally unrelated issues.
I would just sit your best friend down and say something along the lines of: “I really think the world of you as my friend and I know you would never intentionally hurt my feelings. When you said I couldn’t use my stroke and AVM recovery as an excuse it upset me. I would love to be 100% recovered by now and I am doing everything I can to have my life back. When it comes to brain recovery it isn’t a simple fixed time frame. I have to love and accept myself for who I am now including the changes since my stroke. It is important to me that you also accept that although it isn’t visible, I am still dealing with changes since my stroke and that I would never use this as an excuse.”
Try to avoid sounding like your accusing her of purposely being insensitive or intending to hurt your feelings - this might make her defensive. But it is very important she is aware of your situation and how such comments make you feel.
I agree. If she is your best friend she will be understanding. I doubt she realizes how much healing your brain has to do. It’s not the same as a broken arm. It never completely heals and it doesn’t function like what she was probably “use to” prior to everything happening.
as it has been said on here, nobody understands what we go through and how hard it is to get through a day some times but I got some great advice from my daughter 2 years after my rupture and she basically said nobody will ever understand it and you’re probably never going to get them to understand it and she told me I have to find a way to move on and not reference my deficits and my injury all the time as at a certain point people just don’t want to hear it anymore as they have their own issues in life and they don’t know how to respond when I talk about my issues.
She told me people are starting to stay away a little bit as they don’t want to hear about it anymore and she told me find a way to move on or at least put it behind me in a social context; it is tough to hear that but she was right, and once I quit referencing my issues I found a way to put it behind me for the most part.
Most of my deficits will always be with me but at the 2-year Mark I quit talking about it with people and if people asked me how I was doing I’m good is all that I say whether that’s the truth or not;
I don’t bring up my deficits or my issues in conversations I try to focus on other people more and ask them how they’re doing… I didn’t want to drive people away from my life by coming across as the victim… it was hard to hear and a hard step to take but leaving my AVM out of my conversations is probably the best thing I’ve done!
That is why I love this forum as I know I can talk about things on here that I probably can’t talk with anybody else about as you people are the only ones that can understand it!
Thank you for the reply. It’s been a couple of days now since this happened and I’ve had some time to cool off. Maybe you’re right- maybe I need to move on and stop referencing my deficits, even if it is as a light hearted joke.
Oh believe me being able to laugh at ourselves is key to getting through some of this at times; I still do that when I bounce off of a wall or when my speech locks up but I just tried not to reference my issues as much.
most of the people around me now are there to support me and help me if I need it they don’t necessarily want me to talk about it but they’re there if I need them, like at a restaurant if the waiter puts a drink to my left and they know I can’t see to my left so they give me a heads up so I don’t knock it over and embarrass myself.
Believe me the physical parts of the AVM are just the beginning; dealing with some of the social issues can be just as hard.
hang in there it does get better!
… and never stop being able to laugh at yourself.
just yesterday I ran into somebody at a restaurant accidentally and they looked at me and said " are you drunk or blind ?" and I just smiled and said yes on both accounts…I don’t think they knew how to respond.
Wow this topic seems to come from heaven!!! I was thinking two days ago that I should go again to therapy because now I think I hate people and mostly friends…I´m 1 year and 5 months after gammaknife and yes I get numbness and pain on my right side too and I said it to everyone but everyone keep pushing me to do stuff like I have a mental problem and lack of motivation or I´m spoiled and don´t want to work or do stuff.
Honestly there are people that I started avoiding and don´t intend to remain friends or explain again my deficits.The friends that respect what I have just know that when I say I have to go I just have and no further explanations. And it´s true people don´t want to hear us talking about our disease all the time, have you seen the movie “The Island” with Leonardo Dicaprio? Theres a scene where 2 guys get attacked by a shark and they take them to an isolated part of the island because their suffering is ruining everyone joy. I feel like that, so now I think when I m making an effort without complaining its because of me not wanting to stay home bored and not because of anyone that I´m with. Is also very sad if you have a problematic friend that has been for example unlucky with guys all her life gets so many support and expects us to support her because heartbreaks are social acceptable problems to expose but oooopsssssss not health ones those ones “you can´t use that excuse anymore”
If this is your best friend I do think you should address it. The truth is that those who love us the most are uncomfortable with our suffering because they worry about us and they want us back to status quo as soon as possible. That is more convenient and comfortable for them. I am almost 5 years post stroke and avm rupture and I will never be the same. I have grown into my new self and have mourned my losses and after I have had space to do that, those close to me have also had space to process their grief. My husbands has been the hardest because my inability to drive or maintain short term memory and have high function when I am tired impacts our partnership. I don’t think we should shelter people but we should hold space for them to process their complex emotions but not allow them to be cruel about our circumstances. We need to maintain our boundaries to maintain our sanity. If she is a friend you owe both of you the truth imho.
I have to say that I’m with others here. You need to speak quietly and unemotionally to your friend and explain your situation. We do not use our deficits as excuses. They are very real. I have to admit that I can get pretty annoyed with people who just don’t/can’t understand though. I would love to raise awareness of our issues in a big way so the public became really aware of them. Sadly I don’t think that is going to happen in the short term though.
Rita, I totally understand and totally agree with absolutely every word you say!!! All of it. I am regularly watching my friends get enormous amounts of sympathy for their every day, run of the mill, problems and I am left, suffering (still unruptured with no treatment yet, so at a very high risk of a stroke / bleed and seriously suffering) and feeling so jealous of everyone else’s life and yet they are the ones getting sympathy.
for me that is one of the hard parts…listening to others complain about everyday aches or pains or complain about work.
I always want to tell them I would trade places with them in a second but (1) I dont want to alienate everyone (2) I would never wish this on anybody else so I just keep my mouth shut and push on with my life the best I can.
stay strong!
Hey Mike - my kid has a very hard to treat AVM, and has deficits from a bleed. Just wanted to let you know I also struggle with folks complaining about simple stuff - like how busy they are or whatever. One guy at work wanted sympathy from me because although his daughter was accepted at an elite college, she was not accepted into the other elite college she wanted to go to. Best case I have to figure out how to support my kid the rest of his life because he cannot work, and worst case he has another bleed.
So bottom line I wanted to rip my coworker’s face off. But I try to do what’s right, so I just offered well wishes and kept my mouth shut. The way I see it, most people mean no harm, so whatever. But yeah I’ve been in a similar spot man.
This is the same grace and respect that we see other people with disabilities dealing with similar conversations. We just find ourselves in the same position.
I’m sure people have more respect for us if we present the other cheek than if we verbally assault them back.
Since she is your best friend you should tell her. I never complain and people including my husband and my family often think I am fine cause I dont complain then when someone ask and then when I say I am in constant pain they say oh I thought you were not in pain…well I who wants to talk about it and blah blah blah…- Yes when people bitch and moan about shit about excuse my swearing - petty things, and I tell them about what hell I have been through, then I tell them my little sister got the flesh eating virus and almost died and just two weeks ago she was diagnosed with cervical cancer people shut up. She will be fine its in the early stages and we are lucky we have Stanford and we are a close family. - We are lucky to be alive and have modern medicine and to have found this support site and one another- Hugs!!!
I’m only at nine weeks post craniotomy and avm resection. I can see that people are already tired of hearing about it. They cannot “see” what is going on with me; these invisible deficits are the hardest for people to understand. I’m sure your friend was trying to be helpful.
For me right now the light hearted comment has become my go to response, but I’ll need to start not talking about it at all. That’s tough since I truly am in the early stages.
Since you are close friends you might want to explain that no one can feel or experienc what you are going through. That the brain may not heal completely, like a broken leg and that this is something you may have to learn to live with. It’s a long journey for sure
Best of luck
I agree 
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