Kevin Bacon

Does anyone else have the problem that their avm or bleed or other relatable items/topics make way into social settings and/or conversations even when unintended? I just passed my 2 year post-bleed and being social has been the biggest mental hurdle for me; not sure if that's a good thing or a bad thing. I like to consider myself a realist, so I knew that at first after the bleed and crani that I would probaby talk about it a lot. I also knew that because of the resulting disabilities from the bleed that I would most likely fall-back and prefer shadows so I also knew that it would be more difficult to overcome the need to talk about the avm situation if I didn't put myself in a position/s where I would get all my 'talk' out. Does that make sense at all?
Anyway, I've gone through it a bit and I have, you know, embarrassed myself by talking about it to people that really aren't comfortable hearing about it or don't find it fitting for the environment we are currently in (like ruining the mood). I've picked up on cues, which, by the way, is not easy to do when you find yourself relearning simple things like body language, certain vocal signals and tone to indicate the actual language of a conversation (sarcasm, satire-like, innocent honesty vs. blunt truth, criticism vs. personal attack). So I have learned slowly to not talk about it.
My problem isn't really that I do talk about it, it's just that...why? Like, it's not like I sit down with someone with the thought, "OK, how can I direct this topic of our kids digging Angry Birds into how a tangle of vessels in my head exploded one Sunday morning and now my life sucks yet somehow I appreciate it more?" What is that about? I don't want to talk about it, I know people don't want to hear about it....why do I always bring it's like the Kevin Bacon of my life...everything comes back to it.
Does anyone else have this problem? I know that I am most likely still dwelling, I'm still grieving the loss of my left side, I'm still in mourning over the loss of my past yeah I dwell, but I feel like the fact that I am aware of that should trump the subconscious need to talk about it so inadvertently. If I'm not alone on this....are there any tips? I'd like tips...what do I do? Just stop mid-sentence and say, "Excuse me, sorry about that, what I meant to say was: I had no idea they made Angry Bird press-on nails for girls."
There's nothing like nearing 30 and being clueless on how to have a real conversation with someone again...ugh....

It a traumatic experience and at the fore front of your mind so yeah this is common to off load your thoughts. I think this is common for most people through a life changing experience even such things as a partner cheating ext - if you recognise it now what your doing then may be your realising its getting a bit repetitive. My advise would be a course if counselling to Healy you deal with your cognitive thought process. Hope it all works out well and I know 100% what you are on about and that’s also why it’s good to talk on here because its a good place to air off or a release … Take care

Of course you talk about it! How can we not? It is a huge life changing, near death experience. Most people never have moments like these, let alone the rest of their lives to deal with it. Of course we always come back to it. Our lives were changed forever and it is part of who we are now. I remember in the beginning (but after my bleed) I would get so annoyed when people around me complained about how tired they were or they have a hang nail, whatever. Here I was still quite in a fog, missing half of my vision, dizzy constantly, etc. It did take me a while before I was able to not lash out at them. The "filter" in the brain is gone but over time it does get easier to keep in check. When you want to talk about it, come here and vent or blog. It will get easier over time.

It's been 2 years. I wasn't very social pre-bleed to begin with; I knew it would be a challenge once I settled into the "disabled lifestyle." It just amazes me that even when I'm not intending to talk about it, or try to go out of my way not to talk about it, it still comes up! It blows my mind! Luckily, the few people I allow around me typically don't mind and seem to allow me the space I need to realign myself with the conversation. I guess I was asking more for the purpose of what if I'm talking with someone who doesn't know me on such a personal level? It annoys me that my son can bring every conversation to Angry Birds....I can only imagine how it feels when I bring every conversation back to my stroke or AVM or hemiparesis. I guess...I don't know, maybe I feel like I'm being selfish? Like, maybe I'm afraid people will think I only want to talk about that or just anything to do with me and me alone. It shouldn't matter what everyone else thinks but at the same time, I really don't want to segregate myself anymore than I already have. It's tricky....just tricky.

You know Trish touched on something that I think all of us on this AVM journey go through. Specifically, people that complain about being tired, hurting, or a challenge they had to face (my elderly parents are pros at this) and totally forget (or remember much later) that they are talking to someone who is constantly dizzy, experiencing numbness and because of the facial palsy looks like they had a stroke and are socially ostracized. Yes, the variety of affects from an AVM experience are relative, but come on. Initially it is annoying, and you just want to say something. But, people just want to be heard. There really is no competition, but you are justified in feeling the way you do. Yes, it does get better. But the behavior of others doesn't stop. Our reaction to it just changes. This can take awhile. In the meantime, let them talk, complain, or whatever else they wish to do. You can always vent here. These members seem to get it. That's probably the biggest help of all. As far as the Angry birds thing, well I play that on my phone (Space, Seasons, and the original). It helps keep me and my 8 year-old nephew connected. ;)

Hiya Kristi

I hope you have had a good day. . What you went through is big, it is important and healthy to talk about it but your post infers that you want to talk a bit less about it? I don't know when you had your injury? Was it recent? Your need to talk about it may/ will lessen over time, Try keeping a diary, (you said you were looking for tips on how not to talk about it so much,) Maybe have counselling? Try immersing yourself in things you now enjoy and be proud of your immense inner strength. Use this forum when you need to talk about it?

Also, as Eileen says, keep up with current events - read the newspaper headlines, trashy magazines, if you have a poor memory jot things down in note books to talk about - trivia, the news. fashion, nature, what's happening in your community. Try to keep the conversation 'present' ie current to now / today and what is happening now. Failing that, you can always fall back on talking about the weather, asking other people questions and engaging with them. I hope this helps a bit. Feel free to mail me as I know what you are talking about.

My daughter goes through the same thing! I actually had one person who, every time she saw me, would say "so how’s Cait’s brain? Good grief! It is a part of you, and they’ll just have to understand, they wouldn’t be as difficult if these weren’t invisible disabilities, you have some good support her, my Cait lost vision in her left eye, has drastically reduced peripheral vision, and aphasia/disphasia at odd times in conversation, she doesn’t drive so is quite restricted in her life, she was 17 when her brain “blew up” as she tells people. The difficulty comes when she takes time to get out what she wants to say and people get weird,she doesn’t say much, but it makes her feel bad. We work on her words and with super short short term memory it’s a struggle! Stick to it and remember life changing experiences are called that for a reason, you are doing fine and time will bring improvement.

I am 12 years post bleed and I often find it hard to bring up to people who weren't in my life at the time. I guess I find it's hard to describe or maybe it's because it's emotional for me?
My residual side effects are invisible most of the time - my balance, vision issues, etc...
I sometimes think it's because I don't want the sympathy or change the mood.
So, I say - keep on talking because I wish I could! :)

I think those that matter sit and listen to us because they understand it is such a traumatic thing to go through.

If it comes up i try to keep it short but leave it open if the other person wants to know more...and usually ppl start asking questions i end up wishing i didnt bring it up cause it brings back all the old feelings. I think its important to talk about it though and its healthy to do so.

God bless & NO YOUR LIFE DOESNT SUCK! It could always be worse...we are SURVIVORS!

It's nice to know I'm not alone! I don't want the sympathy, either, and sometimes I regret almost instantly bringing it up because you can see on the other person's face, that change that comes over them when they realize their life could be worse and you are proof of that and then the sympathy just washes over them, making their expression almost as if it came straight out of a Precious Moments coloring book.
Staying up on current events is the best advice BUT there is a problem with that....current events make me seem even MORE negative LOL. Biebers trip to the UK, N. Korea, Hathaway's nipple dress, GOP, sequester, NDAA, gun reform, abortion...when it comes to that stuff, talking about my avm experience is the brightest topic in the room because it's less controversial and leaves little room for opinions lol.
I'm not really sure how to explain it except what Eileen described as "conversation hijacking." That's pretty much what it feels like I do. Sometimes it's difficult to tell if people listen because they understand the need or desire to talk about it, because they care or because they are just being polite yet are annoyed. Just glad I'm not the only one out there hijacking convos :) The new way to spread info lol

Hi Kristi,

No doubt explaining an AVM or other traumatic injury is tough, especially to do it without emotion, since it's so personal.

You might try to come up with some short phrases when others notice your deficits and comment about it. Keeping it short and simple might help. Things like "I had a significant brain injury that left me with some deficits, but I try not to dwell on it. I"m trying to get stronger every day.." Or "I had an AVM that ruptured, but I survived and am really working to get on with life."

Hope this helps.
Ron, ks

It's funny you should say that. I had a friend on Facebook a while back (he deleted me over my loud and long-winded anti-Romney rants haha) but he is wheelchair bound because of some brain thing, I forgot it's been too long, but he sent me an e-mail offering support in case I needed to talk to someone who understood about brain injuries, deficits, recovery and illness. I asked him to explain his situation in a private e-mail and he did (and now I feel horrible for not remembering) but I praised him for keeping what could have ben a very long description so short, how long did it take him to shorten the definition of his illnesses? Explaining an avm or hemiparesis can be taxing on my voice because people are so ignorant (not the offensive kind) to the existence of things like avms. And to top it off, they are ill-informed on strokes so I end up explaining more than I care to. Now I just say I had an accident and learned to somewhat judge what people are willing to hear or how fully invested in their own curiosity they are by their response. I guess in that respect, it's just a question of how many times are you willing to repeat yourself even to different people before you learn to just simplify it to the benefit of both yourself and your audience.

Well thank you:) I remember being in rehab not long after my stroke and my sister, whom I no longer talk to, had actually congratulated me and stated proudly to the nurses in the room that of all the people in the world, she never would have expected me to be the one smiling and making others smile while I was currently in the worst phase of my avm experience. Probably the only time she ever said anything postive about me and to me...and in front of people? With witnesses? A miracle happened that day and it wasn't me waking up that morning, that's for sure lol.

I can totally relate to this, because somehow I feel that my conversations with people (especially new people) get steered towards my AVM and the conversation just naturally goes toward it. I really don't want to go into the gory details and I've gotten better at not really revealing too much, I just sort of tease it out there and then if anybody wants to know more, they can ask about it. Or not. But it seems that whatever my AVM experience is, it usually "trumps" everyone else's experiences at the table and then people seem to want to know more.

If everybody's talking about what they do for a living and I'm the 35 year old without a job, well people tend to want to know why. And maybe I feel like I have to explain myself, that I'm not a loser playing video games all day, living in my parents' basement, I just had a stroke of bad luck (pardon the pun) and I'm trying to get back on my feet.

And I know exactly what you mean when you say that you are clueless about how to have a conversation with someone. So part of me always wants to explain what happened and why I'm so clueless!

Hi Kristi. As you know my bleed was a long time ago. Almost a quarter of a century ago…YIKES! It does get easier with time. As you get older…other people your same age will start to have severe medical problems. Then all of a sudden they will remember what you survived and how incredible that achievement was. Do not be surprised if 20 years from now…you get a call from someone asking for help because they know you survived something catastrophic!

Hi Kristi - I agree that life is way too short. I feel that it is what it is. I can only put forth so much energy on complimenting someone’s nail-polish; but that’s just me…not too big on putting too much of my energy on surface things now.

Whereas in my previous life, this really didn’t bug me to do; now, I just prefer not to waste any of my precious energy on those things. Don’t get me wrong, I believe in niceties and trying to put compassion into action; but I find it almost impossible to empathize with something as surface as a poor nail-polish-color choice…call me crazy :slight_smile:

I’m not looking to be Debby-Downer; I’m not looking for sympathy; I’m definitely not looking for ridicule; I just try to let others know why I might need help with something or need to have something repeated or have to leave a certain situation, and hopefully it doesn’t turn into a drama-fest. My priorities have shifted, and I find that difficult to “explain” in a two-minute “elevator-pitch”…I’ll try Ron’s words.

Unfortunately, what I intended initially as an explanation turns into something absolutely unintended. I keep in mind (sometimes, anyway), that a person’s reaction has everything to do with him or her, and absolutely nothing to do with me.

I also try to remind myself that I ALWAYS have a choice…to let go or be dragged (Zen Saying)…or to stay or go (as The Clash once sang), whether it’s a conversation topic, an obstacle to my goal, tolerance/intolerance, patience/impatience, kindness, or whatever…I always have to remind myself that I’m empowered to make that choice; and, as you might guess, whatever the choice is, doesn’t always win the “popular vote”.

Hi Kristi.....from the posts that have been replied till now in this thread + your original post.... the only primary concern of yours which i interpret is "You dont want sympathy but instead want a solution" yeah... though venting out is what we all ultimately end up with & the disappointment we didn't get a straight forward answer or solution to our problem always lingers...

but i have one thing that life taught me...try to be with ppl who r more deprived than u.....u will automatically realize that the complaint "ppl NOT understanding us" will u know why ? bcoz u will stop wanting those ppl to understand u..n ultimately end up spending time n efforts to understand others pain......

by doing will create a positive flow of energy for u n believe me...when this happens many a times we ourselves end up finding solutions or steps to cure our problems...(ur problem common man not understanding u...) u will go through a mental journey of comparing how u behaved with the less deprived Vs how the common man behaves with u..the challenges involved for any human to understand the situation of another human's life ...

everything said n done..though this may appear philosophical again...IT IS NOT... pls give it a sincere try one time n u may discover the magic healing..

good luck..