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Measuring Sticks

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My thoughts this morning are on measuring sticks......Meaning how we each percieve our strokes and how we as indivuals measure how bad we were hit. Who's to say that the survivor that had a mild stroke, bounced right back and bopped back to work within weeks or less as some continue on with their pre stroke life as if the stroke never happened. They are still stroke survivors and I am not denying that fact with what I'm trying to say. Those are the ones that are lucky. Luckier then the rest of the survivors on this site who are wheelchair bound or using walkers or canes. I'm drawing a line in the sand cause I read one too many posts this morning about how they weren't hit to hard, but yet the tone of what they wrote smells of pity and looking for sympathy. Well I think those with milder strokes may just feel personally how devestating a stroke is and I agree it is. But it also annoys me to hear how bad they have it yet they are carrying on as if it never happened. Then you have the flip side of the coin with all the surviors who can't walk or use only one arm. That group of survivors has to fight and claw and scratch their way back to some semblence of a normal life, That group is prodded, motivated and pushed to go beyond any of their physical limitations. That group also has a tendency to be content with what they can achieve and get back after losing it all physically.

 

What I'm trying to say is this- we all have different measuring sticks, we all are hit differently and recover differently. Before you get so self absorbed in what happened to you with a milder type of stroke, before you come on here complaining of what you can't do any longer while you are in your car driving to work, why don't you stop and think how the survivors who are paralysed on half of their body feel? They sure aren't driving to work, hell most of us find ourselves medically retired early.

 

I'm getting fed up with being one of the compassionate ones, the understanding ones. I'm standing up and saying hold on here, get a grip. Don't come looking for sympathy from me, save it for the outside world that can look at you with wide eyed wonder that you survived a stroke. If you need to dramatize the damn thing, tell the uneducated public how tough life is for you now. Tell how you just can't work a productive 40 hour week and still have energy left over to go out partying till dawn. Yup, I agree that is tough to live with. Come on, wake up and realize how many others have it worse then you. Find alittle room in your heart for some understanding for those that are worse then you. Life isn't as bad as you are making it, it could be worse.

Now before I get blasted I am making a point that the survivors who have been hit hard physically deserve some respect and recognition. And those hit milder need to get another side of the story to balence their perspective. We are all members of the same elite club, lets try to be fair here. I'm not judging, just pointing out that stop and think and count your blessings before you go on a massive pity party.

Pam

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Pam, hard for me as a caregiver to listen to any of this. I SEE the result of a mjaor stroke and deal with the problems it creates BUT don't have to EXPERIENCE IT and LIVE WITH IT. Ray is the one who has to do that.

 

In Lifeline Counselling Service we used to have a training exercise with a ball in six colours, in six equal segments. A person doing this exercise was asked to take a glance at the ball and say what colour it was. Some people only saw three colours, some saw four, and some "guessed " that the ball had more colours than they could see.

 

In real life some of us don't see much past our own case and our own problems. Count me there sometimes. Other times, when life is just flowing I can look with compassion on my fellows and recognise the suffering and maybe try to help alleviate it. Interacting with others helps me get some perspective into my life.

 

I know some people appear self-centred and need the reminder that on the scale of things their stroke was slight. That is true and for us caregivers, well we ARE, in the main, able bodied. So I guess the answer is for us all to bear our burdens as bravely as we can, sharing what is helpful with one another?

 

Sue.

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Pam:

 

I think of that all the time, not just with stroke survivors but even "normal" people who complain about their mild aches and pains to me and how bad life is, I just stop short of screaming at them. but I guess I have to understand for eery one of them their pain and their suffering is bigger than rest of us. like even for some of us who r hit hard with disabilities there r still those gray areas that hey you have more functions that what I can do. I think what I m trying to say is all of us whether survivors or not has to learn hey it could been worse philosophy then only you will stop complaining about your problems, counting your blessings has huge payback

 

Asha

 

 

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.

We are all members of the same elite club.

 

 

This line is something that I strongly disagree with, Pam. I mean no disrespect to the people who've had mild strokes---the kind where they are able to return to work a day later---but they don't have a clue what someone like my husband, you, Perry, Lin, Sarah's husband and many others on this site have gone through. Sure, they were shook up by the experience and had a giant wake up call but calling them a survivor of a stroke when they really had a mild TIA? I don't think that is right. They are survivors of a TIA in my opinion. That's like grouping a person who lost a leg in with someone who lost a toe and calling it equal. Sure they are both amputees but would anyone double there is a hugh different here? But with strokes and TIAs there is a tendency to lump everyone together no matter what the degree. This really does hurts the hard hit survivors who spent years trying to get back even a fraction of what was lost, like my husband, because we get bombarded with the stories about how so and so had a stroke and when back to work the next day and you hear the silent extension of that sentence as..."so what's wrong with you that you are still using a wheelchair/cane or your arm doesn't work or you can't talk?"

 

And before anyone says I don't understand what it's like to have a TIA because I'm a caregiver and not a survivor, I had a series of TIAs back before my blood pressure got under control, so I could call myself a part of the elite stroke club if I wanted to. I don't think of myself in those terms because the medical community, at the time, thought I had MS and I was so glad that I didn't bite that bullet that I was happy to move past the whole experience, invisable deficencies and all.

 

Jean

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.

 

I just read Kholt's post on the 'judging' thread where she refers to this blog entry. She's abolutely right in her observation that everyone who comes here to this site is just looking for validation of their feelings. I thank her for reminding us of that because sometimes those of us who've been here a long time do get sort of jaded, hearing the same stories over and over again. That's why when we more seasons site uses vent, we keep generally keep it in our blogs where far fewer people read them.

 

Jean

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This remonds me of the day I was complaing to Patrick about some ache and pain I was having at the time. He pointed to his weak side and said "STROKE!!"- meaning "at least you are not dealing with this!". This was not the first time he had did this to me when I was telling him of pain I was having. I snapped.

 

I told him, " because you've had a stroke, does this mean I am never allowed to complain about how I AM? Is having a stroke the only time I am allowed to b*tch about how I am doing?"

 

If we all said, "well- I'm not going to vent/feel bad/have a pity party beacuse there is someone else out there who is worse off" then the only person allowed to say anything would be...well...lets just say they won't be the ones b*tching.

 

We all need to be able to vent and feel bad for ourselves, and I think of this site as the place where I can do it and know that I will be met with support. I don't let myself feel sorry for myself in front of my family, with my luck they'd show up on my doorstep to "help me". I say things here to people that I would not want to say to our family and friends, as I am a private, guarded person in real life. I don't want to let them in on too many of my fears and worries that come with our current situation.

 

I don't want to start worrying about if my feelings are justified here. Sometimes I KNOW that my emotions are totally out of whack and I just need a chance to GET IT OUT, look at it in black and white, and realize that I CAN BE AN IDIOT at times.

 

Sometimes we are hearing the innermost fears and thoughts of those who are afraid to say these things or let their family know this is going through their minds. We are getting tiny little "blimps" of a person, and the truth is, no matter what we read into comments here (no pun intended) we are seeing only a small facet of a stranger's life. I can have an opinion of what a person is like, but we only see what they allow us to see and so we cannot say our assesment of a person is absolutly accurate or fair.

 

Kristen

 

 

 

 

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Pam

 

i agree with your feeilngs on this subject 100%. i am extremely and eternally grateful that i have recovered from a stroke which, on my discharge diagnosis, left me aphasic and hemiplegic. i think of someone like my mom, who complains that she's crippled when she has a hangnail, and want to throw up.

 

i believe that for a lot of people who complain bitterly about minor situations, it'd the lack of control that gets them. many people are total control freaks, and the fact that they have had a stroke, which, in my mind, is a random act, blows them away. that is why people vent about what they could have done differently to prevent their stroke; they cannot wrap their brains around the reality that this was something that they had no control over. they hate feeling powerless, it makes them feel insignificant and helpless, even though powerlessness does not equal helplessness. these people should be ignored.

 

sandy

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Denny,

I know you do go out of your way and what I pointed out wasn't aimed at any one particular survivor. If what I say doesn't apply, then it wasn't meant for you. I pointed out a generalized point of view. It happened to be what I saw and felt at that particular moment. Seems what I said struck a few nerves with some. That isn't a bad thing cause it made people react and think.

Pam

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What I have to say here maybe confusing(stroke's fault)but I'll do my very best for it not be. When I was growing up my two brothers and I were raised by a very, loving strong lady-"MY MOTHER" who still has those quailties along with a heart of gold but we were raised not to do two things,1-not to brag, cause she always said if there's something to brag about, people will see it-usually and if they can't see it then brag a little but don't keep it up because people will soon get bored and tired and 2- don't complain about every little thing or let self-pity set in. and if we were sick she took us to the doctor but only when she saw we were not getting better and too she made sure that we knew if we were too sick to go to school we were to sick to do anything else, and through out the years those rules of hers has been things that have stayed w/me but since my stroke there's been quite a few days I couldn't do what mom said.Because with a stroke one's life is changed so much within such a short period of time there are times one can't help but think"why me" and "poor me" and there's ALSO been days when I had so much to "BRAG" about I had to tell everyone and mom has bragged too like the day I didn't have to be tied in the wheel chair any more(to keep from falling out)or the day I stopped using the wheel chair and got promoted to a cane. Yes, I think we all owe Steve and all the rest of volunteers here for this web site our deepest graditude for giving all of us a place to come to in our hour of need and the "caregivers" are our angels so in no way is any thing I'm saying in my opinion going against our "blessed caregivers", but I too, being a victim of a nasty stroke that left my left side paralized(for those who don't know) agree w/host Pam and Sandy and this is only my words,read my mom's words-really read and understand what she was saying and maybe this can come to a end...But I'm warning you, no bad words of my mom.....rose

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I completely disagree with this premise. I cannot look at someone else and tell them that I have it worse than you so you can't complain.

 

Frankly, to me, that equates to telling a woman that has one child that she isn't a real mother until she has more children.

 

ridiculous.

 

My stroke sucked for me. period.

 

Sure it frustrates me to hear about people who are working without any problems and living life (Tedi Bruschi, et al.) but it only frustrates me because I wish I was in their place, not because they didn't get hit hard enough.

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Sherry,

You can disagree with this all you want. Also, you are new here and until you have some years participating on this board under your belt, we'll see if you still disagree. I didn't deny that all strokes survivors are survivors period. I lumped each and everyone of us together. Maybe you need to go back and read my entry again, I think you missed the whole point.

Pam

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I had an occassion today to talk to a person who to me seems to have some slight problems. To hear her speak you would think she was skeletal, laying down writhing in agony and close to death. Instead she is a plump, healthy looking middle aged woman with a healthy head of hair, a lovely complexion and plenty of animation in her facial expressions and body movements There was so much difference between how she described herself as being and how she presented herself that there was no connection between the two images.

 

I am wondering if this is a perception problem or if it is something deeper like the girls with anorexia who "think they are fat". Do you think there is some pre-determined condition that makes people see themselves as "ill", "permanently damaged", "beyond recovery" and a few other things my friend threw in for good measure today?

 

I guess I am asking are there "false" measuring sticks and "true" measuring sticks? So some people are convinced they are worse than they are and act accordingly because of how they perceive their condition, rather than how it really is?

 

And when you are considered "fully recovered" by your doctor or therapists do you need some help in accepting that it really is true, you have been there and done that but now it is all over and you are a recovered stroke survivor. Maybe we need to build some self-assessment skills into the process?

 

Sue.

 

 

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Sue,

Good question. Whose measuring stick is used?

Pam

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Pam,

 

Maybe I did miss the point. To me, it smacks of bitterness - that is my view as a 'newbie.' While I understand that one can become jaded over time, I certainly hope that my experience as a fairly fresh survivor still counts for something. It is still my opinion at this point in time.

 

I realize that I was probably too strong in my first comment as this is *your* blog and you have every right to post whatever your views/perspective/feelings/truth is at any point in time. That was simply my reaction.

 

- Sherri

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I'm not judging, just pointing out that stop and think and count your blessings before you go on a massive pity party.

 

I read this thread after I posted a response on the message board and I decided to share a meditation from a book I read every day. Appropriately enough, this is from today's Thought for the Day. By no means is this in response to any of your thoughts, but for me it's content means alot. As a full-time Caregiver I sometimes wonder if I should ever mention a headache or any other minor ailment to my husband since he has so much to deal with already. But then I realize my feelings need to be validated as well since I am a human being. I pray everyday for the strenghth and health to care for him.

 

Try never to judge. The human mind is so delicate and so complex than only its Maker can know it wholly. Each mind is so different, actuated by such different motives, controlled by such different circumstances, influenced by such different sufferings, you cannot know all the influences that have gone to make up a personality. Therefore, it is impossible for you to wholly judge that personality. But God knows that person wholly and He can change it. Leave to God the unraveling of the puzzles of personality. And leave it to God to teach you the proper understanding.

 

Warmly,

 

Ann

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Guest lwisman

Posted

Thought I would chime into this discussion.

 

First, I don't and never have believed in comparative pain. I can't say my problems are better or worse than yours. They are just the situation I have been dealt.

 

Having said that I will admit I am peeved, and maybe a little jealous, whenever there is a post complaining that others think the strokee looks fine. The problems are internal. I'm sure that is true, but what I wouldn't give to be able to go out in public and blend in. I stick out like a sore thumb. There could be no doubt in anyone's mind that I have a problem. Few ask, a few guess it was a stroke. Most say nothing. Every time I go out I have to take along my rollator. This means folding it and putting in the car. I can do this on my own but it is not easy. Then it has to come out of the car when I get where I'm going. Stairs are a problem. Non-automatic doors are a problem. I don't list these things for pity, but rather as a measuring stick for others. Is your situation "better" or "worse."

 

I am grateful I can get out. I know there are many on this network we can't.

 

Each of us should be grateful for what we can do. Just think it is possible that we could not be here at all.

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.

 

Lin,

 

I'm glad you brought the "you look fine" thing into this discussion. People who've had heart surgery, or any other major health crisis, have this said to them, too, and they are not usually okay inside. Yet I don't think they take these innocent and well-meaning remarks as an insult (or however it is that survivors with invisible deficiencies view them). The fact is that physically many stroke survivors DO look fine and it's pointing out the obvious. What I don't understand is rather than let those remarks make a person angry why is it so hard to just say, "Thanks, but I've lost the ability to do so and so." Educate people rather than let the remarks fester. If a person looked fine after heart surgery but still had a invisible A-fib, for example, that prevents them from normal active would anyone hesitate to share that? My husband's A-fib was never kept a secret.

 

Jean

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Guest lwisman

Posted

Jean,

 

Very interesting to compare to other situations, like heart surgery. Maybe because it was surgery John Q. Public understands the person has a physical problem. Because stroke is not the result of a procedure, it doesn't seem to people that there should be a problem?

 

Personally I have a lot of empathy for heart surgery. I have had arthroscopic knee surgery, rotator cuff surgery, and had a benign lump removed from my breast. All were outpatient. The knee and shoulder surgeries resulted in 6 mos - 12 mos before it was really completely healed. I cannot imagine what heart surgery must be like.

 

Back to the stroke issue. I remember before mine I worked in an office where a woman had had a stroke. She was back at work after six months, but only half time. A lot of people did not cut her any slack. People are not educated. Before my stroke, I associated strokes with older people and with poor health. Neither were a factor in my case or in the case of many stroke survivors on this board.

 

Educate, Educate, Educate.

 

 

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