I don't understand

Why I posted a discussion here recently. Why no one said a word. In the last five pages of these discussions, mine is the only one with a big 0 replies next to it. Why I have been alone most of my life. Why people like me, then don’t. Why I was always picked last for stuff in school, I can clear a table of people - say at a wedding - for no apparent reason. I do not smell, and I am not stupid. I listen. and I don’t complain all the time. Hardly at all anymore. I am an alien. Must be.


Hi Beans,

I think I read your last post (the vision one?), but having no experience with vision loss, I had nothing to post!

I think the number of comments is at least partly up to chance…did the people with vision experience happen to cruise by the site that day, were there so many discussions that day that yours got bumped to page 2 before a lot of people saw it, was there a recent discussion on vision that made people less likely to reply to the second one, did people recognize you as someone with a lot of years of AVM experience and think that they had nothing to contribute…

Try posting again on a different day of the week, maybe, and see if you can catch some of the people who know what to reply!


I also think it has to do with page activity. I posted a question regarding and didn’t receive one response. I was frustrated because I often look here first for the answers, as we are the experts. I posted another question yesterday about bruit and have only received I reply. I guess what I would ask the forum is - please help us newbies. I’m sure the same questions have been asked a hundreds of times but understand we are still learning. Sometimes the site is hard to navigate. Don’t give up and don’t take it personally beans :slight_smile:

Aww there is my skill deficit— my question was about focal seizures. :slight_smile: I sometimes don’t reply to threads because my brain won’t let me.

Hi Beansy,
I had read your post, but having no experience in vision loss issues, I had nothing to contribute. One of the things another member posted elsewhere was that many of “us” respond to their questions/comments by reliving their personal AVM story, and they didn’t think that was appropriate. So maybe there’s no way to win, huh? (Big Grin here).

As a moderator here, when time allows, I read almost every post. I especially look back for posts a few days ago and take note of any post with zero replies to see if there is anything I can contribute. I think several others here do as well.

As an example, recently, Stephanie posted a question about a bruit, which my wife originally had, then didn’t, following treatment. I felt confident responding to that post and did. As of right now, that’s the only response. I do not believe it’s the only one because no one but me likes Stephanie. I suspect it’s because no one else either had any experience, or their experience was similar to mine, or for whatever reason, they chose not to respond.

We mods have discussed having a newbie section where people could get acquainted with the board and it’s processes. Not sure we have that yet. Sometimes it’s tough for newbies to navigate here, which is a function of training and the software package the site uses (it has it’s own set of limitations).

For example, I have posted several times that posters can utilize the search function at the upper right. I typed in “vision issues” / search and received about 20 pages of responses. But most new folks don’t know to try that.

I hope this helps.
Ron, KS

Hi Beans. You are one of the best contributors here. We need the insight you have gained from your 50 plus year battle with an AVM. I sometimes miss blogs and discussions because I am working. My Mother-in-law has a funny saying…in her opinion work interferes with life…LOL! Please know that I value your input on here!

Naw youre not an alien…ok maybe but I seriously doubt it. Reading all these replies it sounds like its nothing personal and those that could probably had nothing to contribute. Myself included. Its hard because I too seem to now clear a room and practice good hygene too. :slight_smile: (probably didn’t spell that right)

I think Barbara said it best when she said your input is truly valued. That is the most important thing. Hang in there Beans, you are loved on here.

I’m really sorry your post was overlooked Beansy! I’m sure it was just bad luck. Like others here, I didn’t have anything helpful to add - I expect the discussion probably just got buried before the people who could contribute saw it.

Do take care. x

Yeah, after I posted (of course it was after) I realized I was taking something personally once again that was not personal. I am sorry to have complained. I am living alone now and have for a while. It’s hard to get accustomed to it sometimes, and I go off on tangents.

I think I’m an alien too. I can clear a table of people too with the best of 'em! I think I’m funny but 95% of everyone else doesn’t get it, it goes above their heads. There’s no accounting for taste. I’m sorry that you feel that way. My discussions don’t get a lot of responses either. I think you have to be a social butterfly and friendly to all and leave replies everywhere and make tons of friends and then people will leave more comments. I know who you are Beansy and I enjoy seeing your comments! Aliens gotta stick together :slight_smile:

Hi Beansy,

Since our AVMs can be located in a lot of different places many might not have any experience with what some others do, so a lot of times that has something to do with who or how many respond to a thread. I’ve rarely ever seen anyone who posts here who is so annoying or anything that would cause people to not reply to their posts, and I haven’t read everything you’ve written here, you haven’t done anything that I’ve seen to cause anyone to dislike you. So it’s probably just that a lot of people won’t have anything to add to some threads.

My AVM and aneurysm are in my spinal cord, and many of the threads and posts here are by people who have them in their brains. There are some things any of us who have AVM have in common, but a lot of times I don’t have any personal experience in what someone is asking or commenting about - like vision problems, for example.

I’ve been crazy busy packing and preparing to move to another state next week, so that has cut into the time I have right now for reading and posting at the site, but I’ll have more time for it in the near future.

You never know when someone else here will come along who knows exactly what you’re talking about, or what you need to know, or you will be someone who best understands what they’re going through. Or someone may read your thread days, or weeks or months after you’ve posted it and reply.

You might also do a search for posts and members who have their AVM in the same location as you, or who have the same or similar symptoms and then contact them about your question.

You sound perfectly intelligent and articulate, and not at all alien, and you haven’t cleared any rooms here. So hang in there. :wink:

No need to apologise! You’re going through a lot - it’s totally natural that you get frustrated sometimes. Do feel free to message me if you ever want to chat or vent about anything!


Hi Beansy, I am just frittering another day away on these blogs. I should be working in my house, but what the hell, I can work any day. Your post caught my attention. I thought I was a long-term survivor, but WOW!!! 1959 was a Looooong time ago. Your treatment reminded me of the Star Trek movie where Bones McCoy, courtesy of some time travel, lambastes a 20th century doctor for wanting to put burr holes in Ensign Chekov’s head. As I watched this movie I was about 10 days post-op for my craniotomy. When the actor pressed the trigger on his drill I received a very sudden and pronounced wave of discomfort. Apparently my subconscious mind remembered the sound of my own surgery.

Anyway, for reasons unrelated to my DAVF I have been in therapy for the last year. It has helped me beyond my ability to share. Your feelings about being alone are real and valid. Don’t let anyone tell you otherwise. The question you must ask yourself is, “Why?” Finding that answer isn’t quick or easy. It may take you the rest of your life to answer or it could come to you tomorrow. Aside from all the other stuff life brings most people, you have the added experiences of your medical history. I suspect you have a boat-load of feelings, thoughts, and experiences all stored up inside. These things need venting. It isn’t the amount of crap that lands on us that is important, it is how we deal with it that matters. GOOD therapists can be hard to find. Once found, they can be hard to access. Don’t give up. Start with your MD, or maybe your friends. Ask around and go only by referral.

One of the things I discovered was something called ‘framing’. It refers to the way we view incidents in our lives. Viewing a person’s comment as their intent to disparage or demean us can produce one response, while viewing that same response as a person’s cry for help or frustration can produce an entire different response. Learning to frame things from a positive perspective will be extremely beneficial.

Beyond things like attitude, framing, etc. lies an even more substantial force in your life. You have been through a HUGELY serious surgery. Even though it happened many years ago, it can have long-lasting effects. When someone tinkers with someone else’s brain all sorts of things can happen. The disruption of the previous processes can change the way we think, feel, etc. Some folks actually lose various functions. The physical losses like vision, balance, movement, etc. are only the tip of the iceberg. The loss of emotional function can be more subtle, but just as devastating. Our emotions are what guide us through our relationships with others. Lose one, and you lose a sign-post. Miss the sign-post and you might miss the turn. Miss the turn and you end up someplace unfamiliar. Do you see my point? I know it is frustrating and sometimes we need help. “Asking for help is not a sign of weakness, it is a sign of strength.” John Colyer

If this feeling continues, ask for help. If it goes away then it was probably just a bit of the blues.


Oh, I know that. It’s just I’m old, way past the AVM deal, smart, have a lot of information and experience, and was just posing a question for my information. I like to help people, and it’s easy when you have been through it all. Thanks Tori

Hi Fire Buddy, you are a smart person. I am bottled up with things, and no where to go with them. I don’t work anymore, live alone, do not drive because of vision loss, but manage to stay sane. The alien deal was what I referred to myself as years ago. It just popped up again. I was also known as droopy, since sometimes my face registered nothing even if I was happy. I have a difficult time reading peoples’ faces, too. I have been labeled “emotionally labile” and been called a crybaby so many times. I try to fit in, but I usually don’t. I am proud of myself – I had a good marriage, have a good son, and was a paralegal for a long tome, I hid my “invisible disabilities” because that’s what I was told to do, so I did. Even schools then did not know. I was slow to learn, but I am lucky because I am intelligent, and I listen. I do go to therapy. and I have gone most of my life on and off. Until the woman I see here, no other therapist ever connected my mental issues with my brain damage. Can you believe that? Oh, yes, I went through this all in the dark ages. Thanks. beans

I haven’t seen your last post. But what happened to you? I’ll talk to you.

I got frustrated because no one answered a post of mine, but every other one within 5 pages of mine had replies. I took it personally, as I do, and asked the community why. That was all.

Hi Beansy, you are not an alien you are a beutiful child of christ, and he love’s you very very much. He gave his life for you. Yes YOU!!! Trust fully in him and follow him, and he will take care of you.