What people often say to you and how did you handle it?

People around me believe that whatever I’m still feeling right now is mainly because it is still what I think and feel. They think that it is up to me to renew my balance and coordination, et cetera, et cetera…

I just let them be. What they say is not true of course. If my wellness just depends on me, I’d probably be back on my feet now. But I have observed that it is not the case. Sounds strange, isn’t it? There are times when I follow them though: I would cross a distance as properly as I could, but I would just hear a loud thud on the floor.

It find it hard to explain – probably because I’m a nonnative English speaker. But you see, when my AVM ruptured in 1998, it also resulted to the same side effects I’m experiencing right now. There are two differences though: the heaviness in the left part of my body and a weaker balance.

I’ve already asked about it. But I have been told, over and over again, that they are because it has been my brain that was afflicted. Nothing else can be done. I’ve already been lucky.

I wish I could always remind my loved ones what the doctors say. I wish I could always handle the loneliness and frustration they’re causing me. I wish I am stronger than what they say about me. I wish…

Mae You are a strong woman! There wouldn’t be a breath in you if you weren’t. You have been through so much and still have such a long way to travel. Dear I know that if it was your choice you would be running jumping and living your life to the up most. I am so impressed on how far you have come. I have read your story and your blogs. You are a fighter and I don’t see that you have given up at all! Some people just don’t understand and never will.

Hi Mae,

It’s really hard when the ones who are supposed to love you the most don’t understand what’s going on with you and accept you are you now are. Unfortunately, things don’t always work that way. However, I believe that there are always people out there for everyone who will accept us for who we are. And they become a family of one’s own creation. I feel like you and the other people are on this website are part of my family of creation, and as one of my family members, I am here for you.

Take care,

Debbie

I wish for you … that you might read you as we do , that you might see you as we do ; Your strength and determination and accomplishments are far beyond the scope of most understanding and far beyond what many posess . You can not judge yourself by the yardstick of the inexperienced . You do not measure there as you surpassed that commonness some time ago . “Lucky” you may have been before . As you are more unique now than then - how do you measure yourself to a standard that is not unique ? You do not .
You are here and that says everything about your strength , determination and perseverance . You always strive for more and I wish you more . I wish you to appreciate you for all you have accomplished and will continue to accomplish .
Everything you think and feel and do and do not do make up all ofthe parts that make you whole .
Be good to you . Take care of you .

Thank you for believing in me, Jamie. Thank you as well for regarding me as one of your family, Debbie. Thank you too for goading my morale, Marianne. My question remains though: What the people around you often say and how did you handle their comments?

Hello Mae,

While I was in the beginning stages of my recovery (while I was staying with my grandparents), I was quite spacey, depressed (my doctor would later tell that what I was feeling was normal, and tired all the time. I would overhear my grandmother saying something along the lines of: “Isn’t it sad how she feels sorry for herself? She needs to snap out of it.” Of course, I did not say anything because I did not want to cause tension in the house (and I was grateful that my grandparents let me stay with them so I could recover). Outwardly, I would let it go, but internally, I really wished that she understood what I was going through internally seeing that I had the procedure done a little over a week ago.
I would get the same treatment from some of my coworkers. A little before three months after my surgery, I would return to my job, and sometimes would space out, or remain in my head due to the depression I was experiencing. That would make my coworkers feel uncomfortable to even speak to me, and I would always get looked at as if I was mentally unstable. It hurt for a while, but in time I learned to let it roll off of my back. I remember talking to one of my former coworkers and telling her how my recovery was like me learning to walk all over again, and how I had to deal with depression and intellectual limitations. Even though she had not been through what I had been through, she gave me a listening ear as well as understanding, which I was grateful for.

I’m sorry that you’re going through something similar. I really wished that I could tell my family and my coworkers what the doctors say, but it seems like unless they have been through what I had been through then they wouldn’t understand. Sometimes we judge what we do not understand.

It’s quite strong of you to let them be. You’re right - your wellness does not depend solely on you. You’ll just have to take it a day at a time and be patient with yourself.
And you are strong than what they say about you. You’re still here, and you’ve acknowledged that you know that what they say is not true. If you weren’t you’d completely hang on their every word.

Please know that we are here for you.
All the best to you dear friend, Leslye

I wish I had a dollar for everyone who told me i seemed just fine to them or that I was “lucky” , really lucky to have had a stroke before i turned 40, gone through srveral MRIs, CAT scans and 2 angio grams., Fianlly finding the AVM then painful brainsurgery, PICC lines and A lines that left bruises up and down my arm, having to walk with a walker and then a cane… yes i am better, but no I am not “normal” yet. I do not feel lucky compared to most of the people who say this to me, in fact they do not know what it feels like to have to concentrate very hard to put one foot in front of the other to go two steps, nor do they know the pain of a headache that is caused by a stroke. I have tried to seplain to some of my freinds WHY i dont like being called lucky and they try to get it, but i dont think they do. When people say this I so would like to say, “Dont you mean YOU feel lucky that this didnt happen to you” but I think most of these people mean well they just dont understand. So I try to tell them more details about what it is like to have a stroke and what it is like to have brain surgery and to my closest firends, I try to explain what I dont like about being called lucky by people who have not experienced great tradedy in theri lives.
People seem to want to say that I seem normal to them, maybe to try to make me feel better, but it makes me feel CRAZY instead. Again If I am not too surprised to talk, i try to explain what goes on internally in my mind to be able to do something. Things that used to come very nautally to me. But for some reason people still persist with the idea sometime that " I look fine to them"

“Effects on brain function are often subtle but nonetheless potentially devestating” - John Saxon, Brain Cancers (as quoted in Suzy Becker’s book, “I had Brain Surgery What is your Excuse?”) I highly recommend Suzy Becker’s book although she had a brain tomur, I could really identify with so much of what she writes, and she does a great job of making what other people ask and say to the brain injured seem incredibly stupid (which it often is) & funny (not in a ha ha kind of way, but in a WTF kind of way). I read this quote to myself everyday to remind myself that i am not crazy, and also try to educate other people so they are less likely to say stupid things to me.
I think dealing with what people say to you when you are brain injured is almost as hard as the phycial aspects of all this… maybe harder sometimes.

Oh and i had a bleed in my cerebellum too, and AVM surgery there to remove it. It seems really hard for people to understand loosing your balance, I think it is hard for people becuase it seems so automatic for everyone else, its very internal and hard to describe. Im glad I saw your dicussion post today!

People often wonder why I do not do more on the outside. It’s for the reasons you mention. I get scared I’m going to trip, fall down. Just little things on the ground make it easy to trip and fall. I totally understand what you are saying. Hang in there:)

Mae, There are very few in our AVM family here who are as lucky as I am. Through my stupidity, and fracturing my skull, luckily my AVM and then the aneurysm were discovered. When people tell me how lucky I am, i tend to agree with them, but i also let them know that the pain I feel , and the emotions that take over may be with me for years to come. Most of them accept that, but i doubt if many understand what I’m telling them.
What I do consider to be my good fortune is that I have befriended, and in some cases met, some of the most awesome, brave , strong and inspirational people - right here on this site.
To answer your question - as hard as it may be, I try to handle people with humour, and a smile. In time they soften and accept that you are working towards returning to your old self. Good luck in your journey, my friend

Hi Larisa, I feel exactly the same:)I know I’ve been very lucky and I’m really grateful for that, but I’ve been really unlucky too, when I see other people my age who didn’t have to feel the pain, and can just continue on with their lives and finish college:)but they do mean well, I feel sort of stuck in the past sometimes,thanks for expressing so eloquently what I’m feeling too:)

Larisa Diephuis said:

I wish I had a dollar for everyone who told me i seemed just fine to them or that I was “lucky” , really lucky to have had a stroke before i turned 40, gone through srveral MRIs, CAT scans and 2 angio grams., Fianlly finding the AVM then painful brainsurgery, PICC lines and A lines that left bruises up and down my arm, having to walk with a walker and then a cane… yes i am better, but no I am not “normal” yet. I do not feel lucky compared to most of the people who say this to me, in fact they do not know what it feels like to have to concentrate very hard to put one foot in front of the other to go two steps, nor do they know the pain of a headache that is caused by a stroke. I have tried to seplain to some of my freinds WHY i dont like being called lucky and they try to get it, but i dont think they do. When people say this I so would like to say, “Dont you mean YOU feel lucky that this didnt happen to you” but I think most of these people mean well they just dont understand. So I try to tell them more details about what it is like to have a stroke and what it is like to have brain surgery and to my closest firends, I try to explain what I dont like about being called lucky by people who have not experienced great tradedy in theri lives.
People seem to want to say that I seem normal to them, maybe to try to make me feel better, but it makes me feel CRAZY instead. Again If I am not too surprised to talk, i try to explain what goes on internally in my mind to be able to do something. Things that used to come very nautally to me. But for some reason people still persist with the idea sometime that " I look fine to them"

The operation I had in 1998 affected my balance and coordination. I was able to regain some of it though afterwards. I was back on my feet the next schoolyear, using public transportation–alone.

For 10 years, I have been okay. I had Gamma Knife six months after my first brain operation, and I’ve been undergoing an MRI every after 18 months. In fact, I just had an MRI some weeks before what happened.

My loved ones thought that since I have gone through this before, things wouldn’t be hard for me anymore. It didn’t help that the ‘pain’ I’m felling cannot be seen or felt by anyone but me. I actually have been sent to a psychiatrist! Oh, I wouldn’t forget how hurt I was when I was tricked to attend a session!! I felt betrayed and lonelier. But I didn’t dissent them. Better that they find out for themselves how wrong they were.

These days, my loved ones do not blame me and/or complain anymore. I don’t suppose they finally got the picture though. They got tired, more probably. It also didn’t follow that they got easier on me. Silence can be more demeaning, you know.

I’d like to believe that I’ve gotten used to what they think about me. I may just act like them if I were in their place. It’s also possible that they mean well anyway. They just can’t express themselves properly.

That’s what I do. Or at least, what I try to do everytime my loved ones talk like that. I’m also always keeping in mind every sacrifice they’ve done for me.

That thinking would do for me, more often than not. Still I wish that I have it the other way around. I probably would’ve enjoyed this third chance to live better.

I hope readers of this discussion would derive something from my story. Thank you very much for sharing your own. I’d always be praying for us.

There’s a prevailing negative connotation on psychiatric aid in my country, Leslye. In fact, it became an issue for our new president-elect who was rumored to have undergone psychiatric treatment during his teens.

My loved ones often told me that I remain ‘normal’, Larisa. I was not sure what they really meant by that until they complained about my inabilities (indirectly, of course!) Since my balance and coordination were affected, I could trip and fall down with or without some one looking.

Till this day, I feel tempted to retort to every unwelcome comment, Jessica. Haven’t I been in the worst yet? Do they really think that if I could prop myself properly, I’d remain this way? So far though, I haven’t been convincing…

I’m interested, Tony. How do you humor others?

Have you felt positive, Jmo?

Lucky, I understand what you are feeling. as a spouse to a survivor , I get frustrated when I have to explain to friends and others why we don’t do this or can’t stay out late. they just look at you , I can see that they don’t understand. so I stopped explaining , if they want to hang around and be our friends that great.

is there a head injury group in your area. if there is that would be good for your family to go to so that they can hear what your going through and understand.

love and God Bless
Tina

Thank you, Tina. Unfortunately, there is no such group in here.