People often juxtapose the heart and the brain as the two most important organs in human bodies. I don’t think there is anything more important when a certain organ is sick, that organ is the most “important” thing that makes you most concerned. Even if it’s a toothache, that insignificant tooth decay unconsciously becomes your most “important” thing. For me, I think the most important organ is the brain. Of course, like other organs, it provides nutrients necessary for digestion and ensures that the body can complete some delicate tasks. If you don’t talk about this part, I think it can still make people think. When the former two are weakened, maybe “thinking” can be strengthened, or it may also be weakened, leading to this person’s “regression”. The brain is still different, you can’t think with your reproductive organs, can you? Of course, this is possible with the art of swearing. The time I discovered the avm in my brain dates back to before Christmas in 2019. The feeling of cerebral hemorrhage is strange and scary. The strange feeling is that you have never experienced it before. At that moment (if you didn’t pass out) , the first thing you feel is discomfort. Rather than feeling like you’ve been hit in the head topic deleted by a bullet, you’ll feel pain and dizziness like never before. Because “like being hit by a bullet” is too dramatic and too medical-like, I think most people don’t understand this expression, because only a few people can be hit in the brain by a bullet, and even fewer can survive and express that feeling. This is just a cold, heartless feeling recorded by the doctors, as if using a “specific” event to describe another strange event can be more vivid. But don’t think about whether that “specific” event is “specific” for most people. After the operation, I believe that many people choose to “record” these states on the Internet. Of course, there is nothing wrong with this, but these “records” have changed from private to public, and “records” have became to“propaganda”. This should be a personal choice. I don’t have any right to criticize other people’s behavior. I just express my opinion. These “records” are nothing more than gratitude for the company of others, showing the current living conditions, and perhaps reflecting a “vulnerable group” longing for sympathy and charity from others; and a “Versailles” attitude(Chinese expression, means when you have done a miracle,and you act like nothing). Of course, anyone can do this, it is nothing more than recording a video and writing a copy. Now that the network is so developed, such novel things are bound to attract people’s attention. I think this is also good, it can let people know that there is such a group, and when people are striding forward, they can notice that there is still a group of stagnant people, and it can also make people take time to know that this society is not so perfect. We should be considerate and tolerant to them, understand their existence, maybe we don’t need to use encouraging words to sympathize with them, I think, leave them a space to be alone, be yourself, it would be better. Even these “disadvantaged groups” are also acquiescing to the status of being a “disadvantaged group” with peace of mind. Of course, they are also working hard to change back to their original selves. This seems to be an attitude of being neither humble nor overbearing, but it is a kind of acquiescing to the current situation, and then seeking a complete change. Not only physically, but also mentally. The complete change here is not a change from the original, but a complete return to the original. In fact, there is no change. People on the outside may see their changes, but they don’t know their past, so I think their behavior is a kind of “deception”. You ain’t never the same when the air hits your brain. I think this sentence is correct from a physiological point of view. It should be “everything has changed, but nothing has changed.” What has changed is the patient’s physiological state and lifestyle; what has not changed, I think, is people’s confidence in the patients, or their own confidence: believe I can change back to the original state, of course, it is their minds that have not changed. They have experienced suffering, but they are grateful for this suffering. When they go back to the original (hope everyone will), their minds are also unchanged, and they still stare at everything with the mentality of a “vested interest”.
Oh, by the way. I’m Jimmy from somewhere in China, I’m glad to join this big group.
Hey @Jimmy1103
How are you doing?
It sounds like you’re busy thinking about a lot of things in the middle of the night! I think we all have our way of approaching our experience with our AVM that is as often the same as others as it is different.
Best wishes,
Richard
Hello Richard ,
Thank you for caring. I don’t know why I thought too much last night. Since I started to use cellphones, I liked to write down everything I experienced, and added some feelings. I think not only these survivors in our group are getting therapies, looking for a treatment and doing rehabilitation, but also the different societies are doing these as well.
Sincerely
Jimmy
I would like to think of it as a rebirth starting again
Yes, I totally agree with your idea. I think it is a rebirth as well. Everyone has different ideas for one’s own lifestyle, everyone’s conditions are not the same. Such as different societies, different countries, different friends, different relatives, different races, different genders, and so on. What we can do is not to judge one’s idea, what more important is to respect one’s point of view, even though you are not completely understood their thoughts.
Hi Jimmy, get out of your own head a bit, it will do you some good. Others can only judge if you let them, otherwise ignorant observations stay with the observer. Hope you’re doing better!
Thank you so much for the advice, I will.
Thank you for sharing your thoughts. My personal experience with my AVM completely changed my life. I think my general personality mostly stayed the same, but everything else changed because of the damage my AVM did to my brain. I can’t do any of the physical activities I enjoyed doing, my emotional states changed. I can get irritated quite easily now, although I’ve been working on that. But because I am disabled now, I have learned a lot more about empathy. People do treat me differently now. The most common phrase I hear now is that I don’t look disabled. But my point is to not make assumptions, everyone is different and each AVM is different.
Ohh, I hate it when people say things like that and if I’m having a bad day, my tongue can turn into a lethal weapon " And you look intelligent too, but then looks can be deceiving, can’t they?" Yes, it’s blunt, yes, it’s direct but they get the message. Or a little more gentle ‘ohh, So what does disabled actually look like?’. Not many are game enough to answer that one. I’d gladly give my symptoms to anybody who wants them. ‘Here, you manage it all…’ but I’m yet to find any willing takers.
Back in the 70’s there was a TV comedy show and a line from that which I’ve never forgotten.
You should never assume
Because when you assume
You make an ‘ASS’ out of ‘U’ and ‘ME’.
Back then I was young, didn’t really think much about it. But now, Ohhh, that’s so true.
For many years I taught people with disabilities. Some assumed they were dumb, but what they taught me about adaptation and determination, no book could ever teach. And I was the teacher.
Never assume.
Merl from the Modsupport Team
Hello Merl,
Nice comment, I don’t like others say I’m disabled either, and I even don’t like others praise, the most common manifestation in China is a gesture: thumbs-up. Once I made some progress, like if I walk or write become steady, people(most are relatives and friends) showed their thumbs to me, and usually added “Good job!”I don’t know why, I don’t like this action. Even though I know this is a way to show their happiness for I made progress, but I thought they also showed discrimination and sympathy. Am I thinking too much?
And about the word “disabled”, I really don’t like others to describe people who had/have AVM. Right now, I still have to rely on wheelchair, I know I’m disabled, but I don’t like others to point out. I think this thinking is a pride, is a hope, a hope to act like normal people.
Like I said, I don’t like others to point out, but personally, I understand I’m disabled. I think people who are “assumed” disabled should construct, I don’t know, maybe a theory? I thought “Feminism” is a good example, I don’t mean all theories should put on ourselves, but make some corrections, according to ourselves.
For example I don’t like others to point out, but personally, I understand I’m disabled. I believe this kind of thinking is a little bit the same as Chizuko Ueno’s theory “恐弱（afraid to be weak)”.
Jimmy
Jimmy, I’d just say this is a normal way for you to feel. I have read from others on here who are (and I’m going to use the word “ashamed”) about being less able than they were. It is exactly as you say a hankering to be able-bodied, as you used to be. I think it’s very normal.
If it’s realistic to look forward to escaping the wheelchair, then that’s ok. It’s a goad that perhaps keeps you motivated to get better.
If it’s less realistic to escape the chair, then maybe it is less helpful for you to be in any way shy of the chair. I don’t have any experience of being in a wheelchair, so I can’t suggest how to think about it but what I’d try to encourage you is that certainly in places where I live and work, we are learning, trying not to see the wheelchair but to see the person who happens to use a wheelchair. It’s not easy. It’s definitely an obstacle that gets in the way a bit but I’d say never feel less than anyone for needing to use a chair: I think you should adopt a pride that despite the fact you have to use a chair you’re fighting on. You’re making your way with more obstacles to overcome than most people. And you’re smashing it.
I hope something I say might help.
Very best wishes,
Richard
Thank you Richard, your words are really helpful. I’ve read several times and it really encourages me. Thank you.
Jimmy