Is There an Elephant in the Room?

[jriva]

 

 

This topic is another variation on the subject of acceptance as it applies to having a stroke.

 

Another thread on the board has me wondering if there isn

[Guest kmk]

Maybe it has to do with our society in general. We have become a society where speed and quickness is of the essence. When you meet someone on the street and say "Hi, how are you?", do you really want to know? Most people don't. They don't want to know how you are, it is just a greeting. So if strokers are afraid (perhaps hesitant would be a better word) to talk about their stroke, perhaps it is just another indication of the callousness of the society in general that we live in. I don't think most people really want to know about other's maladies as it brings their own mortality too close for comfort. They just want a quick happy word and then go on about their business.

 

Kathy

[swilkinson]

There isn't an elephant in the room but there is a mouse or two sitting in the corner.

In OZ we seem to have a bad habit of dividing the sexes at parties, BBQ's etc. So the women go down one end of the room and talk babies, shopping, family matters, the men go up the other end and talk heaven only knows what.

Where does this leave Ray, the guy in the wheelchair or as often happens at dinner parties pushed firmly into the table? And where does that leave me as his caregiver, food cutter, drink bringer etc? Usually all by ourselves.

Sometimes a friend will come over and sit and say something, but soon the laughter at the other end of the room attracts them and off they go.Anyone got a solution to this stuck-in-a-corner problem?

I'm not ashamed of Ray, not at all, he is who his is and as loved now as ever. I am ashamed though at the way others treat him sometimes.

Sue.

[marlen]

HEY, I HAD A STROKE AND NOT EVERYONE IS PRIVILEGED TO HAVE ONE. IN MY CASE THE WAKE UP CALL CAME IN TIME BEFORE I PROBABLY WOULD HAVE WORKED, STRESSED, OR WORRIED MYSELF INTO THE GRAVE.

 

A STROKE AFFECTS SO MANY LIVES, LET ALONE THE SURVIVOR'S. I HAVE NO PROBLEM DISCUSSING MY NEW FOUND ILLNESS AND RECOVERY WITH ANYONE. I CANT BURY MY HEAD IN THE SAND, BECAUSE THE TOWN ALLOWS DOGS ON THE BEACH AND THEY USE IT AS A REST ROOM. I DON'T WANT TO DIE FROM DOGGIE DOO DOO.

 

BETTER TO FACE WHAT IS THAN LIVING IN DENIAL. YOU DON'T GO FORWARD LIVING IN DENIAL. YOU JUST CAMOUFLAGE THE TRUTH.

 

LIVE AND ENJOY,

 

MARTY

[janiem]

Maybe it

[Guest lwisman]

I've never thought of it as lucky before, but maybe it is. I look like I've had a stroke. Strangers can tell. Those who are not as aware may not realize it is a stroke, but they can tell something happened.

 

I'm not embarrassed at all by my physical demeanor. Only a few people have actually asked me about it.

 

I go about my business and do what I can do. I feel lucky to be alive and given another chance at live. It is other people's problem if they cannot deal with my health issues.

[bstockman]

No I am not embarrassed I had a stroke..I did not choose to have this ..it is a medical prolem....

 

I have no problem saying I had a stroke..I respond much the same as Janie..I do not elaborate unless people ask questions and I answer them.

I also feel that this is making more people aware...it can happen to anyone at any age and suddenly with little or no warning.

 

If I am in my comfort zone or on the phone with people I am comfortable with my speech and thoughts flow more easily.

 

If I am dealing with someone I don't know on the phone and the conversation is going to fast and I can't keep up, I do ask them to slow down, or it may take a minute for me to respond.. i had a stroke. People have been very pleasant and it is no big deal..

 

I have also talked to people with shoulder problems and tell them I had rotator cuff surgery....

 

at family gatherings it seems like the split is by ages...the younger couples and the older couples..the younger will come over for a few minutes of conversation...and the grandkids run by and stop for a hug or a quick snuggle..or a "tease" from granddad..lol

 

I think people respond to how you present yourself or how you accept yourself.

Bonnie

[teal]

i don't have any problems talking about it at all, never even thought to be embarrassed, till i read this, lol i'm too busy getting through the process of living and improving to worry about others - i figure if they avoid me due to my stroke (or any other reason) its their loss cause i, pretty cool to be around

 

always,

teal

[slmstrokeangel]

I'm so tired of having to apologize for my stroke its not funny. My mumbling dysthartic speech makes everybody I talk to have a different reaction--on the phone, the salesclerks, etc. I don't look like I had a stroke and "surprise" is a biggie. Perhaps this belongs in a blog.

[cinder]

Jean, I've thought of your thread on and off all day. I know it was directed at survivor's though.

 

My Dad doesn't know he's had a stroke (let alone 2) unless you tell him. He will forget in a few minutes or not really comprehend what that means. My Dad is a great guy, and has never met a stranger. I haven't noticed anyone looking uncomfortable around him, although he is sorely lacking in friends and family now.

 

As far as if I am embarrassed? I know that wasn't part of the question, but I'm throwing it in here as a bonus. I have taken Dad many places, pushed people out of the way so he can see, kicked rude self-centered souls accidentally in my plight to get him where he wants to go. In all that time, all I've ever felt was proud. Proud of him and all he's survived. Proud of myself for being with him at this point in his life. I dare anyone to get in his way.

[spokangie]

Sue W

 

I can relate so well to the corner thing with my husband too.. Mostly it happens with his own family.. My family at least tries to talk directly with him, they talk about everything with him, include him in telling of jokes, even pulling stunts on me.. he gets a kick out of that..Then there is his family, they just sit and stare at him. It makes me think they are waiting for him to do something out of the ordinary. All questions except the initial greeting are directed at me.. I keep telling them why don't you ask him he can respond to you.. But it is like talking to a wall ..

I have watched him interact with people that do approach him,, his attention span or lack of it, I think makes people shy away from holding a conversation with him for longer than 5 minutes.. To them he seems disinterested, To him he is frustrated by not being able to comunicate to them what he is trying to tell them, He would rather give up and go silent. That is when they walk away. I can see the frustrated and disapointed look in his face, so like you I will sit with him.

I am finding that when I explain to people that he had a stroke, many times he will drive his wheelchair out of earshot..

Today he had a Dr.'s appt and the same nurse that saw him last time asked me if I am going in with him.. OK.. I told her well if you want to find out what is bothering him than I suppose I better as if you will recall he has APHASIA.. she said nothing to that..

So you see even though he is afected by stroke he doesn't look any different than another person in a wheelchair.. with a disability..

 

Take care

Angie

 

 

 

[Marnie]

I am not ashamed of having had my stroke not in the least. I am just so fed up having to explain to folk I just dont like everyone knowing my business especially if it doesnt need to be there's.

[Guest kmk]

Marnie,

 

That's the part I don't get. The making excuses part. I understand telling people you have had a stroke. I do it all the time. But I think if we say we've had a stroke and have an issue with something that is happening, be it something we aren't able to do, or understand, or participate in, then we aren't making excuses. We are just stating a fact.

 

Kathy

[pprovost]

Discussions about my stroke do not bother me generally if the person inquiring is a good listener and not intent on solving everyone's problems. I get distressed when I relate the difficulties I have as a result of my disabilities. When I hear '' Ya but... Why can't you try .....'' I cringe and feel heat under my collar. I feel I have given a 100% effort and don't need to have people with able bodied perceptions implying that I am not trying hard enough. However, I have met many people who have quality information to pass along. I am very receptive if it is presented in a way that gives it credibility. For example , one could say, '' Did you see the article in the newspaper about the possiblility of such and such therapy having showed promising results for people like you? If you like, I could send the article to you.

I have found that as time passes, I get more used to dealing with explaining why I have to wear a brace and now my skin has thickened enough to repel most irritants.

 

Talking about stroke is much easier I would guess than talking about a degenerative disease or terminal illness where the prognosis is that the future will be worse than it is now.

 

Pat

[jriva]

 

 

I don

[spokangie]

Good point Jean.

 

I make it a point to let people know that he had a stroke how else are they going to identify with his disability.. As I mentioned in my post just sitting in a wheelchair doesn't explain his disability or ability.. I find I have to ask all the pertinent questions before making appointments for him.. otherwise I get stuck in a situation where he is not able to manuver in.. Even when I had asked all the right questions I found that the person was not listening, wasting our time and their time.. This pertains to a visit to a Optomologist... we had to reschedule him to a office that was somewhat handicapped accessible.. Another time was to a hotel upon arriving we find we are in a small room with two beds squeezed into it no room to manuver a wheelchair, the beds are nailed to the floor so you can't move them. After travelling 4 hours I didn't feel like looking for another hotel in a strange city.. then we find out that they have no handicaped bathrooms at ALL on the main floor.. well that is another story... won't hijack the subject..

All that I am saying is we should not feel ashamed or frightened to tell that our loved one had a stroke, it is not a desease that another can catch, but it is something that can happen to them or to their loved one.. In some small way we may even be educating them on Stroke prevention..

To the survivors that feel they have to explain themselves I say, there is no shame in SURVIVOR.. You have come a long way and are still progressing. Telling people that you had a stroke should not make you withdraw or feel upset.. But then again it is ultimately your choice to explain yourself..

We caregivers who have to be the voice of our loved one know the frustration on a different level..I myself see the "oh you poor dear" looks.. That is when I turn the tables and say I have been blessed to have him with me and that he is a survivor and doing wery well thank you, then I fill them in on his progress.. You realy do educate a person that way. Many of them would say " wow, I never looked at it that way" or Gee someone in my family had one too, he is doing realy well today don't loose hope.. That is encouragment from a total stranger.. .

 

Funny thing, one of my daughters asked why do I tell everyone he had a stroke, can't they tell.. I tell her no, they can't, they think he has a disability and if I don't tell them and they speak to him and he doesn't answer, they will take it that he is rude.. explaining to them makes them realise that he is unable and they treat him differently..their tone of voice changes right away.. It is a tone of patience and understanding.. I don't have to tell them but I do..

 

Take care

 

Angie

[slmstrokeangel]

 

I wish my husband would introduce me with "How do you do (or something like it)? This is my wife who is recovering from a stroke." so

I wouldn't have to be so embarrassed about my speech defects. He usually refuses so I have to mumble my apologies.

 

 

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Three posts were split from this thread and given a thread of their own to prevent a hi-jacking. Here's a link to the new topic: Condescending Tones When Talking to the Disabled--- http://www.strokeboard.net/index.php?showtopic=3585 MBA: JR

Edited August 10, 2005 by jriva

[tdehaas]

To me it's all about acceptance and not wanting to be identified or singled out for your disability, which for a stroke survivor, many times takes the physical form of being uncoordinated, awkward, or even "spastic". remember as a kid and kids are the worse about teasing or making fun of someone different, whether it was the way someone walked, looked , spoke or dressed for that matter.. Survivors of cancer, heart surgery, etc.. don't normally bear those physical handicaps. So there is sometimes a misguided shame about stroke that our society and culture helps create in our minds. Along the same lines as the "shame" of being unfit, overweight, or unathletic.

 

Tom

[Guest ssanchez]

I let everyone know that I met God by having a stroke it was a wake up call for me, I was an alchoholic a speed freak, but since I stroke I have been sober and walking with God for 10 years and loving it.

 

Yea there are things that I have problems doing but I am here with all of you

surviving the stroke and taking it day by day

 

People ask me aren't you mad at God I say no he spared my life. I was killing myself.

 

So today I say I am glad I stroked or I would have never known my creator and wound up in HELL tormented forever and ever, And yes I tell everyone that short story .

[dabergstrom]

It never dawned on me that anyone would be embarrassed about any medical condition let alone stroke. I guess if I were to have been embarrassed it would have been the three months spent wearing the plastic back brace, could not hide at home because it was during dance competitions and she competed every weekend. (the brace was hugh and unavoidable) I have always used humor to get through situations where I thought anyone was uncomfortable.

 

I am neither proud of nor ashamed of my limp or my terrible handwriting or even my lack of finding the ability to say a word now and again. I am grateful that my stroke was minor and that I was able to get back to my own form of normal in a short time. I will be darned if any other person would make me feel embarrassed.

(Of course, I am the person who, when I ask, waits for an answer "How are you today"?)

 

I do feel empathy for those who do feel embarrassed because it is yet another hurdle to overcome. I may be wrong but I think peace of mind will come after tackling that particular hurdle.

 

Here is a hug to all those who struggle

 

Dot

 

 

[richman]

I think the difference between a stroke and some of the other conditions mentioned (heart attack, lupus, cancer, etc.) is that those diseases don't rob a person of his/her core personality and mental faculties, at least not until any of those diseases progress to a debilitating point. A stroke has an immediate and permanent effect, and it robs you of yourself in a very short time, and you cannot mount a defense against it. For those who have known you, and in some cases, loved you, you're embarrassed and afraid to tell them why you're different, and that the battle is over even before you know your body has declared war on you.

 

-Joe

[larrymm]

I agree with Joe. A stroke is fundamentally different than many other conditions as Joe alluded to.

 

I have no problem telling people I had a stroke if the situation calls for it. However, the difficulty I run into is that people often don't know anything about strokes so I usually don't tell them. I am probably their only direct contact with stroke. True, people are very nice and make allowances for many things (speech, movement, thinking, etc.), but they don't know what to do beyond that. Sadly, I don't have any great suggestions for them either.

 

I think the "shame" thing is more evident in those survivors who have memory of who they were before and want to be, to a degree, like that again. For me, I am striving to be as much as I used to, even though I know I will never be, because each little part I get back of how I used to be is a little bit of who I am. I have read on here many times to not let the stroke define who you are. Well, to me anyway, getting back to who I "was" is not letting the stroke define me.

 

I just realized something. While this thing may be understandable, when you're going through this process (because it is so lengthy due to how long it takes a person to recover an ability) the stroke *does* define you. Is there a way to not go through this process and still try to recover who you were?

 

Do I feel the isolation that others have mentioned? Yes. Do I feel the frustration with communication? Yes. Why do I keep doing what I'm doing? I don't know - genetics maybe?

 

Larry

[jwatrous]

Jean -

sad to say, you are right as when I had my stroke in 1985 at age 39 :Tantrum: , there were "some" members of ny immediate family who connected mental disease with stroke -

After a stroke, most of us change alot physically, and sometimes this confuses others that we are mentally as well as physically challenged!!!!

I have had people speak very loud to me, and at restaurants, ask my husband if I want dessert!!!!!!!!!

We can only hope and pray that society will evolve to the point where they know the difference!

June :cheer:

[rdittman]

I believe for those who have memory and speech problems, it may be more embarassing to them to try to explain their condition if asked.

 

As for me, I really don't care if people ask as to what happened. If I find they are losing interest in my explaination, I'll move on to another topic, or find somebody else to talk with. I try not to be rude, but if people are truly not interested in knowing, then all I'm doing is spewing hot air, so what is the purpose? Besides, I already spew a lot of hot air anyway, so I'm told. :yadayada: :big_grin:

 

Bob

 

[kanderson]

yes i think i was embarassed when i had my stroke because of the physical changes, especially if you were always concerned about your appearance, and really had no one to help you prepare for the day,( ie makeup, hair, clothes on correctly,etc) and you had to do the best you could with what you had. that bothered me alot and still does, i guess i wanted to show people, i could still look good despite my condition. a stroke effects ones physical appearance alot of the time more so than other illnesses. you need to like yourself before anyone else will too. kimmie