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I recently heard a conversation between two people that if it were between a stroke survivor and someone else, would or should it been taken to heart?

We all know that sometimes an issue that many survivors deal with is being rather blunt, or no filter conversations.  So when conversations between a survivor and a caregiver or spouse or whomever, has comments  should it be taken to heart, if said by the survivor. I know when I had talked to someone ,especially family, I have been known to say things that, let's just say, not particularly " Gran approved".  

 

( My late grandmother was ,and in some ways, most definitely the one who had the final approval for things.  I held her in high regards and respected her opinions and criticisms) 

 

But when someone says something to a survivor, why is so sharp?  Is it because some survivors feel more vulnerable?

 

what do you think?

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That's a hard one Kelli, I think a stroke should not be a complete get out of jail free card, on the other hand sometimes and in some circumstances allowance need to be made. So I guess it depends, if it's being used to knowingly manipulate or take advantage then I would have a problem with it, whether it's to or from the strokee. From the outside we can't tell how much control or knowledge someone has so we need to be careful not to judge too quickly or harshly.  But asking either party of the conversation "are you OK with that" if there is an opportunity should also be OK to do.  Even if all that does is alert them that it looks not OK to someone else that gives them a chance to learn and think about possible patterns they might want to try and work on.

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Brilliant reply heathber.  I find myself sometimes saying exactly what I think with no filters and I have hurt people.   I can't help it, especially if I am overtired.  Today I was swearing a lot, which is not generally appreciated. I was sleep deprived and frustrated. As heathber said, it's always best to ask for clarification.  And I am still learning to not take what people say personally, and to ask for clarification if I am offended.  

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In my past life as a caregiver I felt very much unappreciated as Ray no longer said thank you or made any comments of a positive nature about what I did for him. And I did everything for him. This became so noticeable that one day his friends rebuked him for his bad manners when he spoke to me harshly. That was never Ray before the stroke. Over the years I just got used to it. But it is hard to adjust for the caregiver when things change so radically.

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I think now, in the states, we are so divisive with each other and over hearing some of the conversations are so intense. It just got me thinking how conversations, like that one, could effect someone who .. had a stroke. 

12 hours ago, swilkinson said:

In my past life as a caregiver I felt very much unappreciated as Ray no longer said thank you or made any comments of a positive nature about what I did for him. And I did everything for him. This became so noticeable that one day his friends rebuked him for his bad manners when he spoke to me harshly. That was never Ray before the stroke. Over the years I just got used to it. But it is hard to adjust for the caregiver when things change so radically.

Sue, that is exactly what I had in my head ,, Would one bite back? It's just so interesting to change perspectives when overhearing a conversation  🙂  

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I agree totally, with what has been said.  Last night I yelled at the tv when the drug commercial came on,  the one that says "80% of strokes are preventable".  To me, that says our strokes are our fault and could have been avoided, if we had only done something better. 

I think I would not have reacted as strongly Pre-stroke.  The same weakened filters that cause me to cry at minor things can also cause me to lash out verbally.  We may be circling around to the idea that only those who have stroked or been caregivers, are the only ones who understand - strokes-.  I've yet to meet a Doctor or researcher who, I believed, really understood my stroke results.  Frustration from that kind of situation can result in the verbal "lashing out".

Thanks for letting me vent.  James

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James I hate that Ad too, there were posters from it at my rehab hospital that made me cross every time I went past them. They felt like a personal insult/rebuke.

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On 1/25/2021 at 2:29 PM, jwalt said:

I agree totally, with what has been said.  Last night I yelled at the tv when the drug commercial came on,  the one that says "80% of strokes are preventable".  To me, that says our strokes are our fault and could have been avoided, if we had only done something better. 

I think I would not have reacted as strongly Pre-stroke.  The same weakened filters that cause me to cry at minor things can also cause me to lash out verbally.  We may be circling around to the idea that only those who have stroked or been caregivers, are the only ones who understand - strokes-.  I've yet to meet a Doctor or researcher who, I believed, really understood my stroke results.  Frustration from that kind of situation can result in the verbal "lashing out".

Thanks for letting me vent.  James

 

On 1/25/2021 at 7:03 PM, heathber said:

James I hate that Ad too, there were posters from it at my rehab hospital that made me cross every time I went past them. They felt like a personal insult/rebuke.

TOTALLY. And that just validates the thought... The other person may not realize that something that was said could cause an outburst whether we/they/me/us are even aware the action. Meaning, I think, even though 'we' know that that kind of reaction isn't fair to the other(s) that may be around. I try to conduct myself in a reserve mannor when speaking to others but it's like an instinctive or primal reaction .. it's weird.. :crazy:

 

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  • 1 month later...

Gosh this is such a tough one. I definitely have been on the receiving and giving side of this. Some examples are my conversations with my daughter not to long post stroke. We both said things that we wish we could have taken back and we have both reacted in negative ways. I think for both of us we fall into both sides. I know (PBA 😆😭🤬) was a common reaction from me especially earlier post stroke. I truly know that I can not help/stop it at those moments. I have also found myself being unusually harsh/hurtful in how I express my reaction and my feelings at the moment got away with me. I'm pretty sure the same is true for Hailey. Then I can remember moments too where others were in my opinion cruel and hurtful beyond getting worked up about something. For instance, (BTW I loved my father... RIP daddy) when my brother passed away suddenly I had an instant panic attack and severe PBA (just crying uncontrollably for like 2 hours). My Dad said "oh just keep on crying, let me get you a bucket". Of course I cried that much worse. Very hurtful words. A reaction from my father that was unusually cruel period and I could not help myself to calm down. In a way, over time I learned a sense of "I don't give a bleep". I also learned to stand up for myself (maybe in a blatent way at times). I think there is no perfect answer here. There are lots of factors during the moment that colors a conversation. I am the first to admit I haven't always colored within the lines. One thing that helps me (maybe this is one sided but I've learned it often is) is to know and be very obvious where my boundaries lie. "Look, here's my bubble. Step into my bubble and I'm chopping your toe off!". Im so very happy I figured this step out. Also, try to keep a kind heart first and as a fellow stroke support member has said many times "be the duck". 😜 I hope this makes sense to someone else lol. I'm not it makes sense to me. 

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But all the strokes I know of were preventable. Mine were. I insisted on smoking tobacco. The nicotine constricted my blood vessels and and a pea sized part of my brain died. 7 times before I finally quit smoking.  It's been 6 years and no more strokes.  I'm not any better. My wife says I have gotten worse. 

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3 hours ago, Xevious said:

But all the strokes I know of were preventable. Mine were. I insisted on smoking tobacco. The nicotine constricted my blood vessels and and a pea sized part of my brain died. 7 times before I finally quit smoking.  It's been 6 years and no more strokes.  I'm not any better. My wife says I have gotten worse. 

I do agree with you that most of the strokes are preventable. Mine was not preventable it was just a freak accident that happened but I congratulate you for at least quitting  smoking. Yes ,looking back and knowing that you could’ve done it sooner is probably a hard bullet to except  . Could you please explain what you mean by worst please?

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So, many strokes may be preventable. But those blanket statements that imply your stroke is entirely your fault are still hurtful.  Remember a stroke is any event that causes a loss of oxygen to the brain. Please explain how a brain bleed or a weak carotid artery wall that suddenly after 43 years of use decides to give way with no warning is  something I am supposed to prevent. Are we also blaming babies in utero or infants under 2 for their strokes too. (sorry if this is blunt but that statement really pushes my buttons!!!)

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  • 3 months later...

I get it Heather, totally. 

 

I used to get: what did you do to yourself?

 

To myself?? Seriously? This is not something that I would do to anyone, let alone myself!

 

The thing that gets me is when people say "well I could get hit by a bus tomorrow, "

 

Totally diminishing what I'm going through, what I've been through and what's still to come.

 

I want to know, is there a maniacal bus driver out there somewhere, just waiting to knock down half the planet?

 

💚👑

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What a lovely thought Janelle 🙂 , it is the obvious corollary of course, but no one ever says it!  And it not the getting hit by the bus that's the issue it's what you do afterwards.  Getting hit by a bus may not be the end of the story, although that saying assumes it is.  We need to counter those comments with something like "and how will you cope if the bus doesn't kill you?"

 

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Excellent comeback Heather!

Will definitely try to remember that one!

💚👑

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On 1/24/2021 at 6:26 PM, ksmith said:

I recently heard a conversation between two people that if it were between a stroke survivor and someone else, would or should it been taken to heart?

We all know that sometimes an issue that many survivors deal with is being rather blunt, or no filter conversations.  So when conversations between a survivor and a caregiver or spouse or whomever, has comments  should it be taken to heart, if said by the survivor. I know when I had talked to someone ,especially family, I have been known to say things that, let's just say, not particularly " Gran approved".  

 

( My late grandmother was ,and in some ways, most definitely the one who had the final approval for things.  I held her in high regards and respected her opinions and criticisms) 

 

But when someone says something to a survivor, why is so sharp?  Is it because some survivors feel more vulnerable?

 

what do you think?

I think you nailed it. If April took what I said to heart I would be alone right now and if she let herself be too hurt by my mean reaction sometimes to her most innocent comments I  might be 6 feet under! lol

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Willis I try to be diplomatic. 

 

To do that, a 10 word sentence becomes 20 words, and then I lose my train of thought!!

 

💚👑

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My simplified perspective over the several years post stroke is, to say or challenge, or not. Most often I choose not, because I'm relatively sure that the outcome will likely be tainted to a degree with my stroke sense. I take time to weed thru it and pray to enlist my higher nature, I've learned to put more trust in that approach. It works for me. For a quick recent example my wife and I reached an impasse that could have led to a more destructive rather than constructive path. I chose not. I retired to my room and prayed about it, asked my higher power shine some light or clarity on it rather than put my faith in my "stroke sense" I soon returned to the other room where I sat down, apologized for my aggressive grumblings, and got right to the simple truth of it all, I've changed, I'm not the same person as I once was..truth, not colored, no manipulation, just the honest truth. 

 

I haven't any more control over my perceptions than preventing the unexpected brain aneurysm where things changed, and I have limited control over those reactions at times. Like Heather so eloquently said, it's what we do next. So I pray and trust what may come. Usually what does comes next is unadulterated honesty. It can often and likely be a little painful, uncomfortable, pride has a strong foothold, but I can truthfully say for me it's a very welcome and rational approach, and things get some kind of resolve most often for the better, or we agree to disagree, and thats real, raw as it may be at times. I'm trying, I'm learning...

 

I can say that things are changing, in constant flux, but most importantly appreciated.

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my wife will tell me I am yelling at her, when I have no idea i was. If we disagree I have to make a conscious effort  to be calm , not snippy.This has gotten better now that I do daily meditation, it has cleared some of my outbursts, in fact all of them.I even remain calm when a driver flips me off..which I despise.

My issue is- 

I work so hadr at getting better and see such  minimal results.Others comment "you are doing great" I want to say not true, but I just say thanks.

The spasticity I have is relentless and makes everything a challenge.Seeing a neuro doc about an intrethecal baclofen pump, but the idea of it does not  excite me at all.I am not wanting to give up trying though, even for small reward, so I will see where this goes.

 

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