Who can tell me what the word(well, it’s not really a word) ‘comfortability’ is from?  So I had this experience last weekend.  This is what happened.  I went to hang out and watch the Penguins game with my friend at his friend’s house.  There were 4 or 5 other people there.  I was apprehensive about this because I’m really uncomfortable hanging out in groups because of my speech.  He told me he thought “well just get her in a group and she’ll be fine.”  I wasn’t fine.  I can’t speak loud, I can’t speak fast.  My speech lags WAY, WAY behind my brain.  And this is after I destroyed some brain matter.  So anyway, I kinda shut down and didn’t say anything and just sat there.  A few hours later, my friend’s friend says to me “say something, anything, you haven’t said a word all night.”  This made me want to burst into tears and dig a hole and bury myself in it.
I absolutely, 100% know that I make a whole lot of stuff a lot worse in my head than it actually is.  But some things really are as bad as I say.  Please err on the side of “it really is as bad as she says.”  Don’t ever, ever think “well just get her in the situation and she’ll be fine.”  That’s a recipe for disaster.

Categories: Brain stuff, Recovery, Stroke stuff

Tags: , , ,

35 replies

  1. Amy, I have no speech problems, but I too am self conscious about times I mispronounce certain words because my tongue is slower than my brain. Even though no one notices, I do and it makes me a bit crazy, so I just don’t talk. which draws more attention as you discovered. Mostly people just want to include you. I take it as something I have to do to be kind to others, participate even when I don’t truly feel; like it, but I do anyway. Just because I had a stroke doesn’t excuse me from participating in the human race…that’s how I see things anyway. Marta

    • No it doesn’t excuse me from participating, but it certainly excuses me from participating in situations that will make me really uneasy.

      • Amy, you’re right being really uneasy does create stress which is of course not good. I do find that people don’t notice things I think are glaring, and I try not to shut myself off from contact even though most people aren’t smart enough to be interesting. There I’ve shown you that I’m a bit of a highminded type…not all that attractive a quality. Marta

  2. No one who is living with the effects of a stroke should ever be pressured, cajoled, guilted, or in any way forced to do something they are uncomfortable with socially or physically. Stupid normals will always tell you that it’s “good for you”, but until you are ready, it’s NOT good for you. It’s stressful and stress is bad for recovery. My friends are often “sure” they know I can manage a particular situation because they want it to be so. These are the same people who tell you you will recover if you”want” it enough and “stay positive”. It’s no wonder my BFFs aren’t human anymore.

  3. Since I was pretty much socially isolated with my ex we never went anywhere or invited anyone over this problem never happened to me. At work, I couldn’t participate in group discussions until about a year post-stroke. This wasn’t a problem because I was never known for speaking up at meetings. Now 8 years post I actually look forward to social situations. It takes time and that was an insensitive comment. I might have tried the reply, ‘When you finally have something intellectually worth discussing I’ll join in.’ But that’s the arrogance in me showing up, Don’t follow my lead.
    Hang in there kiddo.

  4. I am so sorry, Amy. How frustrating that must have been! I do know that people mean well, but they just seriously have no idea. None. You are an excellent conversationalist and I feel very normal and comfortable talking to you. I have enjoyed our chats very much. This one situation does not define you.

    Zack always says that he doesn’t participate in convo because his speech lags behind his brain too, but he also has a hard time thinking of responses sometimes, a lot of times. He is getting there and you help me to continue to hope that he will one even farther than he has.

  5. And, I really hope that friends’s friend thinks twice before he calls someone out like that in a group of acquaintances. It would have been one thing to ask someone’s opinion on something in a group of close friends but quite another to call you out in front of strangers, using words like “say something, anything…” I really hope he found that to be a Learning experience.

  6. Awwww…I’m sorry to hear your story. Its all to familiar. Except I usually overestimate my own abilities. I think I can do anything like I used to and then I fail miserably on a regular basis…. An unwelcome reminder that my brain is still all effed up! Ugh! Sometimes my husband does it to me too, but he’s learning my limitations. Its so hard to push the boundaries to improve and not fall apart simultaneously. I had my own “meltdown” of sorts twice recently. Once, playing “hopscotch” with my son. And yesterday, “thinking”. Apparently, I can not even think about complex things anymore. Learning my limits even after more than 3 years is still so hard, sad, and frustrating. Big social events are a no for me too, you are not alone that’s for sure!

    • Yeah the thought of going to a party makes me want to puke.

      • I was never really that into parties even pre-stroke. I much prefer dinners of 4-6 people. But that’s me (and my husband too), not the stroke. Because my disabilities are exclusively motor, I look and sound the same as I always did sitting at a dinner. Until Steve has to cut my meat that is. This is good I suppose, but it means that my friends and family have a difficult time understanding why I hate my life and am so filled with despair. To them I am the same Julia I always was. Eventually they get it and stop pressuring me to go out to movies or restaurants or shopping, but it takes a while and some never seem to get it.

  7. Anyone, stroke survivor or not, would react the same as you did – no one wants to be called out on someone else’s judgment or treated as an entry in a dog and pony show. No one.

    BTW, you hate watching sports. Stay true to yourself.

  8. I hate sports too, but I think an afternoon spent watching penguins would be a real blast. There formal wear is just so adorable.

  9. Amy, I hate getting unsolicited advice, but I decided to give you some: have you tried talking to just one person at a time when you’re in a group?

    • For me, the issue is all the noise and commotion…extra stimuli. I get overwhelmed easily. I acquired something called “hyperaucsis”, where normal sounds are too loud and loud sounds are jolting. I don’t have a speech problem anymore but in a group its just too much for me, I’ll shut down too. I wear earplugs a lot too because the noise is so unnerving, and my visits are short, with breaks where I go outside or to a quite place to rest my brain.

    • That wouldn’t have worked with this crowd and in this setting. It was just awkward.

  10. No one told me what the word comfortability is from. I guess no one gets the grand prize. That’s a shame, it was amazing.

  11. Damn. I bet I know what the prize was. It was a penguin, right? House-trained too I’m sure.

  12. I don’t know about comfortability, but there is a philosophy and a movement called livability that advocates for every house to have first-floor accessibility with zero-step entry and an accessible bathroom.

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