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The Other Side of the Coin


lydiacevedo

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So, maybe this is not a very popular point of view, but it must be spoken if we are to get the most out of our support people.

 

Stroke affects EVERYONE around the survivor. It has as lasting and as permanent an effect on coworkers, friends, neighbors and families as it has on the survivor themself. HOWEVER, THE EFFECTS ARE VERY DIFFERENT.

 

We can feel the gaping hole in our heads where something used to be and is now gone. We know that our blank looks are because something that we used to understand has encountered the "teflon" left over after a stroke and we just can't get it to stick. We feel the pains and we feel the "brick wall" landings when we encounter our physical limitations. Our brains start to buzz when we are mentally or emotionally overloaded, and we recognize the slogging through half-set cement feeling when we are exhausted. there are actual, real feelings and sensations associated with the world of life after a stroke, even if those sensations are non-sensations.

But everything I have just described has NO OUTWARD SIGNAL. And all of this doesn't even begin to cover the crying jags and inappropriate emotional reactions we actually do display.

 

Our friends, family and community have absolutely no "in" to what goes on inside of a person post-stroke. They have no way of understanding that we can no longer think in layers, that once we are unable to experience something by one of our senses, that something simply ceases to exist. We "look" ok, so we must "be" ok. Remember, most people get 80% of their input visually.

 

All they know is that for reasons that they do not understand and cannot prove or disprove, something has change within us. They have NONE of the sensations or internal clues that tell us when we have done too much, can't grasp what it is to not be in control of our bodies or our brains fully, and don't know how to talk to us without getting an inappropriate emotional response because they have no idea what our triggers are, and most of the time, we are not able to explain it to them.

 

Unfortunately, when we are in the moment of the emotional response, we are incapable of looking at things from the other side of the coin.

 

I know, calm and somewhat relaxed, I can sit here and play Devil's Advocate to other survivors, giving them little jewels of insight and wisdom to the other side of their hurts where family and friends are concerned, but in the emotions of the moment, all of that balance, understanding and advice is absolutely nowhere to be found.

 

I seem to see it more and more often, lately, on the boards. Maybe it is the stress of teh holidays. Maybe it is just "that time of year." I spend a far greater amount of my time "lurking" around this site than I have actually posting lately, for reasons all to simple to wave away - I'm feeling too tired and overwhelmed, a lot of the time, to talk. But I have been reading and I have seen a growing trend of posts about how "no one understands what I am going through....no one wants to talk about my stroke....no one seems to get me any more."

 

Everyone is right. Unless you have had a stroke, you have absolutely no way of understanding what the survivor is going through. Unless you've been in that place, you0 can't begin to "get" all of the subtle and no so subtle changes that have gone on in the mind and body of the survivor. Because of that, non-survivors are confused, puzzled and a lot of the time, even scared. So, understandably so, they don't want to talk about it. They don't want to be reminded of it because they need a break from feeling confused and helpless, at a total loss about what to do, say, or how to help the survivors whose lives are interminally intertwined with theirs.

 

Just something to think about when we start feeling alienated from those we hold dear.

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Lydia, this is the best explanation of our weirdness that I have heard yet and I have been at this stroke business for 27 years. Thank you. I am going to print this if I can or just copy it and show it to Andre and maybe my family. Thanks again and Bon Voyage to you and Happy Holidays

 

mc

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Lydia:

 

Every stroke is so different & so is every survivor. I never felt like what you are describing. I guess we all have different journey & how we all deal things in our life.

 

Asha

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Thanks. for expressing that.I'm so tired of trying to meet the bar emotionally and behaviorally of my prestroke self and equally tired of making excuses and explanations when I don't.

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Thank you so much for this insight. As I was reading this I keep thinking to myself this is what my husband has been trying to tell me and just couldn't get the words out right. You sure did get thur to me and I can not thank you enough :You-Rock: Sally

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Lydia,

 

You are so right. I am one of "those" stroke survivors who looks ok on the outside but struggles everyday with those very things you mentioned in your blog. Family, friends, coworkers, they just don't get it. I don't get it. Thank you for posting this.

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