The human connections


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Now that I don't work (aside from caregiving of course!) people lump Ray and me together as outsiders to real life, so I know a little bit how you feel. I get so protective of his feelings, since he can't speak for himself, and it hurts me more than him I think. Previously close family and friends would rather pretend that he's dead, as horrible as that seems. I feel like they wish he was, in a way, because it's too weird for them to see us in this Twilight Zone. They are so scared to come "down" to our level, like it might be contagious if they relate to us too much. They don't realize what an enlightening journey it has been in some ways. I lived long enough that I thought I knew everything, and then discovered I knew almost nothing really. Only the easy stuff, which doesn't count. We're embarking on a strange new journey, who knows where it will take us, hopefully somewhere where we will learn the real secrets of life.

 

You are right, they probably think of us as retarded now. Looking back, for my whole life even when I was a kid, having a brain injury was my biggest fear. I was a little bit of a hypochondriac when I was younger! Well now I say (and I did say this right to my SIL) if you're not part of the solution, you're part of the problem. Then I purposely avoid them, as much as they avoid me; I refuse to play the victim. Casual acquaintances are easier to come by; even strangers can be so kind for the few minutes we interact... and at least we still have each other, and the cats of course. Luckily we weren't real social butterflies, which used to bother me in the old days but now I'm glad because I don't have as much to miss of our old life.

 

You're going to have to find people that are more like you are now, and not necessarily those who are socially acceptable. There are so many out there. You're just looking in the wrong places. I am glad that my husband is getting therapy at a brain injury place, because I am feeling more and more comfortable thinking outside the box when it comes to friends. It's hard as anything to let our old world go, but if I don't I'm not going to make it!!

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  • 2 weeks later...

People feel funny around us stroke patients. They don't know what to say and too afraid to ask questions. I'm the type of person (at least, I was) who's was very friendly and could strike up a conversation with a rock. But now I'm dealing with Aphasia and it has been hard. Extremely hard. It has gotten better since I'm almost 26 months post. Most of my friends are gone now. I miss that part of my life. They didn't stick around because they either didn't want to see me like this or they thought I wasn't gonna get any better.

My friend picked me up and we went to a bar the other night and this guy keep looking at me. So he eventually came over and asked what happened to me. I prefaced my answer with you can ask me anything. That's the type of extroverted person I used to be. I told him to pull up a chair and he did and we had some interesting conversation. Not only was it theraupuetic but I needed that interaction. Thank you!

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Maree: from a caregivers viewpoint. Family day today. Everyone is in the house discussing what the plans are. Bruce can't get into the house easily and since we are going right back out, I don't get him and the WC, and walker out; just to get him back in. When my sister and I discussed this tonight, I explained that this is the loneliness and isolation Bruce and I feel. Does anyone think to do this by the car and include us? Or come out and offer to help get Bruce inside. I said it is almost like we have become an afterthought. And this from family, can you imagine the rest of the world?

 

I just accept it now. If people ask, as my sister did, I explain it. If not, just go with whatever we are given and be thankful for it. Debbie

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My ten-year-old son asked me today why I don't want to go anywhere with him. I said in my best Dick Clark impersonation " because I can't go". And he asked why and I told him that too many places don't have handicap accessibility, I'm working on curbs, bathroom issues, etc..etc....

He's the one that encouraged me that I can walk down into the basement. I had to have help before. I had to have someone take my cane downstairs and someone to "spot" me. A small miracle occurred when he said "Dad, you can do it". And then I tried it and haven't looked back since. I'll take the small advances when I could get them.

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Yeah we were supposed to go to my nieces wedding in June, in San Diego, then I found out my family had rented a beach house that had no handicapped access (especially the bathrooms and entries) so I'm going to Skype it instead. I was sort of hurt when they sent a link to the house and it was so obviously not for us, but I'm sure they have other more important things on their mind, and understandably so.

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I used to live in San Diego. At the beach, a block away from the ocean, on Toulon Ct. in Mission Beach. I love Southern California, especially San Diego. Too bad I couldn't go in your place. I regret not going back there pre-stroke. I couldn't go back now.

It's no place for us who suffered a stroke!

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Ha, my niece was supposed to get married in my sister's gorgeous backyard in La Mesa, but the wedding got too big and they moved it to the Hyatt in Mission Beach. Luckily they have a beach house north of La Jolla, up on a cliff overlooking the beach, so most of my family has a place to stay. Just a few of us that were on the fence weren't included. A world class place, I am sad we can't be there.

 

There's a great fish taco place in Bird Rock that would be my first stop if we did go. San Diego is the one place in California I can see myself living, and Ray heartily agrees. He wants my sister to adopt us!

 

She flew us out about 4 months before the stroke, lent us one of their Mercedes and left us on our own at the beach house for a week. The luckiest thing that ever happened to us, in retrospect. Can you believe, she had to really force us to come. I am planning on getting us both back out there in the next year or two, somehow, as I said I'm always pushing Ray past his comfort zone, I think he'll be fine. Is there something bad there that I don't know about? We're not going to do all the athletic stuff, just be onlookers as usual. And pig out on Mexican cusine.

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nice to be left out all the time..... maybe a group of us should try to rent a nice handicap assessible place somewhere nice and push all our spouses past that comfort zone... but maybe it would help with each of the spouses seeing someone they have lots in common with and then we spouses can just have time together meet, and share??? no right now but maybe in the future nancyl

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Hi bob, I had a stroke in 2010 very mild one but a stroke. It has changed me as I am very blunt now and do not hear much from my daughter and grand children . If people are not facing me, whatever they say is a jumble, yes it is tough having a stroke. all you can do is be your self. eltell

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My next non-comfort zone dream is to go to Ireland, the west coast where it's mostly country, and roam around. There are tour groups that specialize in handicapped access. And everything in Ireland (or most of Europe, for that matter) is so old that it's not like here, with ramps and handicapped bathrooms required by law. I used to love to go to foreign places and immerse myself in everyday life, but I have a feeling that that kind of trip isn't going to possible ever again. Today is our 35th anniversary, and I always said we'd go back to Rome to celebrate. Now maybe a ride in the country, and dinner at a fancy restaurant in town, early reservation so we don't affect the other patrons. Life is good, I guess.

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Not right away, maybe end of year or early next year. Maybe we could book a Strokeboard.net exclusive trip, that would be cool!

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i really would be interested and it is a thought--if admin. of strokenet are interested i think their might be people who are interested. It could be a resort type of thing or a cruise or whatever.... I would be willing to travel as it seems most people are on the east coast and for the sake of trying to set something up it might be easier in that territory to begin with and see how things go.. nancyl

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  • 4 weeks later...

Maree: from a caregivers viewpoint. Family day today. Everyone is in the house discussing what the plans are. Bruce can't get into the house easily and since we are going right back out, I don't get him and the WC, and walker out; just to get him back in. When my sister and I discussed this tonight, I explained that this is the loneliness and isolation Bruce and I feel. Does anyone think to do this by the car and include us? Or come out and offer to help get Bruce inside. I said it is almost like we have become an afterthought. And this from family, can you imagine the rest of the world?

 

I just accept it now. If people ask, as my sister did, I explain it. If not, just go with whatever we are given and be thankful for it. Debbie

 

I know that people make plans...then, after they have done so, they say - what about Maree? Maree, of course, cannot do whatever it is, (or they do not want to interrupt their enjoyment by helping me) so they, then have to make plans for me, exclusively, which is annoying for them, and embarrassing for me. My partner solves the problem by leaving me in the car, or on a seat, whatever. Why do they not see, that I would just be glad to go along and watch them rock climbing, go-cart racing, whatever, rather than being left behind as an after thought

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  • 3 weeks later...

Eltee, Thank you for your post. I have the same issue. When ppl talk fast or in a high piched decibell i can not here them The words group togrther and its like one long jumbled word. Do you have a high piched rinnging in your ears? I do. Maree next time some one leaves you in the car honk the horn constantly. I am sorry please Maree partner please take the time to take maree with time is nothing and everything.

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I take Bruce most everywhere with me on the regular daily stuff. I have to pay a caregiver for work and I have to save the very little left over for special occasions or an evening out for me. But that is rare.

 

He loves being out. With family and some very close friends, he makes a great effort to just sit in the WC or in the car. These people make an effort to include him. But he is still at that point where he loses interest quickly. That is OK. My main goal is just to get him to interact with life in general, to realize that there is life beyond stroke and he has to take part in finding and accepting that. Then we also have conversation for later-also important with his aphasia.

 

I do understand that not living with stroke every day is the issue. I was diligent in Emailing everyone that first year post to let then know what he could do, couldn't do and what we were working on. I am amazed at how some really have stepped up. A friend from work who has known Bruce as long as I have comes with another co-worker every month. She transfers him, they load the WC and often bring me a gift of a massage for the next visit. They won't do BR and that is certainly understandable. But both of them told me in an emergency, they would get through it. They plan a night out with him and other co-workers every six months or so and always have one male on deck for the BR. I live this way now. When I look at the detail and planning they put into their friendship with Bruce and his disabilities I have a softer heart towards others. This is a very difficult way to live. Debbie

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  • 8 months later...

Hi there, I do not think you are crazy at all! It is a real shame that your family is not dealing with your stroke the way you are. When I first had my stroke, I could not talk about it YEARS. I hate to say it now, but I was ashamed, and I did not want people to know so I kept it a secret. I moved to a new city, and no one knew me or anything about me, so I had that fresh start to try and re create myself. Over time, I realized that my stroke was an important part of me, so I slowly started talking about it. I think it is best to share with people. I think that your family will eventually come around, my husband doesn't even like to hear me talk about it very much, but he is still supportive. I think it is just hard for people who have never had had something as Traumatic as a stroke, and there is no way for them to understand what we are going or have been through.

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  • 2 weeks later...

Subi99 I know what you are going throught my so call friends an some of my faimly says the same thing to me .So you are not by your self even if i say eny thing about stroke they get up an leave . SO i thank we have some where to go when we wont to talk about it .So if you fell that you won't to talk about it I would love to talk to eny one that would leasion to me . So please you can talk to me if you can . So you have a friend here if you ever need one ok .

 

 

 

 

 

 

Little jo :thumbsu:

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Sebi I would have crashed without this site. it has helpeme see my feelings, behaviours bathroom problems etc are normal for a disabled strokie.

 

 

No one except another strokie or caregiver - can understand.

 

we live in the country - no neighbors neither daughter lives close to us. if we didn't go out once a week to church - I would never see people.

 

 

YES our whole lifehanges

 

 

others do noy kknow what to say - I have a close girlfriend she has looked after me some I'll talk to a bit. but wanting to encourage ( when I talk about having trouble keeping up with bookkeeping & a few chores I THINK SHE WAN"TS TO ENCOURAGE ME 7 says things like "you are doing so well" when I need someone to see the struggle & frustration. my husband still gets iritated with some of my memory problems - and I often have to remind him"stroke brain- & stroke deficits

WE"VE OFTEN TALKED HERE ABOUT _ LOOSING WHO WE THOT WERE GOOD FRIENDS ** pls ignore caps - keyboard is acting screwy

Sebi- please visit often and if things are really getting to you. don't be afraid to post to stroke survivor Titled - VENT bathroom problems or what ever. & complain about the unfairness of what is going on in your life

 

FIRST - it is no good to bottle it up & often the action of voicing it, even writing - can release alot of the steam & pressure on the inside helping you to think more clearly.

 

 

 

Susan from Alberta Canada

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I know what you mean about this site beinga good place to unload. I've told friends and family that they are spared a lot of

unpleasant blah blah about my day to day agrivations. Here, no matter what has me cranked up, there is always someone

who can relate and share their gripes as well.

I mean, how can you tell a non strokie about bouncing off walls, struggling to dress or even pull socks on ?

Until the freedom of movement is lost, it's natural to take it for granted.

But we, know how to celebrate the smallest victory. Like a day without a fall. :party:

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