60 replies to this topic

[LeahC]

My very nice well meaning friend thought everyone in a wheelchair couldn't walk or feel their legs just cos I can't, I thought that was cute though bless him xx

[Denna]

Snakeye, on 29 June 2011 - 07:49 PM, said:

What pisses me off is when folks assume anyone who can walk, stumble or shuffle a mere eight or ten feet with the use of a walker or canes, even if they are capable of accomplishing that feat only a few times daily, can't possibly have a spinal cord injury nor should they spend time in a wheelchair..."If you can walk why do you use a chair to get around?" and they have no idea what complete or incomplete means when it comes to this condition...I get tired of exsplaining...

That and when they hear about you walking they automaticlly think OMG your getting better! You can feel now! Um NO!
And another thing that I get with my parents and I know they mean well but it still makes me mad. When they come to fisit and they see my legs spasem they are like well thats a good thing that means they want to work! Maybe if you spasem enough they will work! I have explained again and again why they spasem and its got to the point to where I just say Yeah and change the subject.

[mcwriter]

Snakeye, on 29 June 2011 - 07:49 PM, said:

What pisses me off is when folks assume anyone who can walk, stumble or shuffle a mere eight or ten feet with the use of a walker or canes, even if they are capable of accomplishing that feat only a few times daily, can't possibly have a spinal cord injury nor should they spend time in a wheelchair..."If you can walk why do you use a chair to get around?" and they have no idea what complete or incomplete means when it comes to this condition...I get tired of exsplaining...

Okay, this one hit a nerve with me, because this is something we do get a lot.

We are tired of explaining too. That few feet does not even occur daily or sometimes even weekly and that few feet are paid for later in more pain & fatique. On the other hand, they naturally assume one is paralysed if they use a wc or in bed most of the time. Arghhhh!

You just made my head spin, snakeye!

[Ratticis]

So lately I've been going to the local senior center a few times a week with my grandma and her husband to floor curl (Get's me outta the house and kills a few hours). Well one older, more senile lady there will ALWAYS ask (but never me, mind you, usually my grandma even though I'm right there) "What's wrong with him?" "Why's he in a wheelchair?". One day my grandma told her "I dunno, you'll hafta ask him!" (She didn't, just gave ame a kinda wierd look like she was worried about catching something). Another time I told her "Nothing's wrong with me, I'm freakin' awesome!" Another time I told her "I just never learned to walk, so I got this chair"

[aberonieduderoo]

congrats on the engagment!!! we are newley engaged as well...planning planning planning! also looking for a house as I am relocated to his city!
as for the 'rude' questions....I am a correctinal officer, as was he before the his SCI and I dont know if antone knows a CO but we are a pretty morbid bunch!!!! so when people found out about is dating the questions started! I was ok with most questions but its when they start asking about the stuff HE is embarased about and I know HE wouldnt want people to know, that when I get caught up on what to say. usually I stick to...he wouldnt want me talking about this...I put it right on him so they cant question it!!!
I hope you dont take anythinf ANYONE says to harsh'ly' because really...who cares what they think about you after you tell them to mind their own F*#$ing buisnes!...thats the CO in me
good luck on the wedding planning and congrats again!

[aedmon8793]

The worst question ive had is
"Yall can still have kids right?"
It's not that it was so outright rude, but it was asked of me in front of a lot of people who I'm not very close to.
I had just discovered the amount of problems we are likely to face with my fiance's c5/6 incomplete trying to have children, and though I am trying to stay posotive and count of the good, it will be one of the biggest heartbreaks of my life if we cant have children.

[andycans]

some one asked my wife if she had thought of leaving me after the accident because she could not stay if i was her husband my wife did not no what to say so she just walked away

[Rolilancou]

Ratticis, on 30 June 2011 - 04:39 AM, said:

So lately I've been going to the local senior center a few times a week with my grandma and her husband to floor curl (Get's me outta the house and kills a few hours). Well one older, more senile lady there will ALWAYS ask (but never me, mind you, usually my grandma even though I'm right there) "What's wrong with him?" "Why's he in a wheelchair?". One day my grandma told her "I dunno, you'll hafta ask him!" (She didn't, just gave ame a kinda wierd look like she was worried about catching something). Another time I told her "Nothing's wrong with me, I'm freakin' awesome!" Another time I told her "I just never learned to walk, so I got this chair"

OMG most of the answers here cracked me up!.

Super ackward and most uncomfortable for us is at all times and I'm not even joking, but ALL the time we're out doing what ever people will come to me and refer to me and talk to me or ask me about my fiance even though he's right there. And of course it never fails that sets him off and blames me for taking control when people do that... how am I suppose to control when and how people come to me and ask me when they should be asking him in the first place???. And thanks to all those people I get a "scabby" man later lol. This comes especially from my family but they are learning (the hard way) that my fiance is in a wheelchair but is not mentally challenged. I don't know why, it's just an automatic reaction from people to treat him like a child or like he's not there and completely ignore him and come straight to me. The cultural difference and language or course doesn't help at all, we live in Mexico and people here are extremely ignorant about SCI so they see a man on a wheelchair and like auto pilot they think "he's mentally challenged" why?? I don't get it, I have learned to say though "Ask HIM he's right there, he can speak, listen, and he understands he's not dumb. But like Ratticis says, people look at him like they're going to catch something. That insults me and enrages me more than the other dumb questions I get from people.

[mylovesinachair]

My relationship is pretty new and I don't usually tell anyone he is in a chair until they meet him, so they don't judge before meeting him. EVERYONE asks me, "are you sure you can handle that?" I HATE THAT but I have to understand that they don't see him or we go throughout our day... I explain to them that there is "nothing to handle" he is more stable and independent than any "able-bodied" man I have ever dated! He has a job, goes to school, has his own place and his own car. He has taught me not to get upset at people for their "ignorance" of his situation, although sometimes it's hard not to...

[rue2youhubby]

I've not been asked as ridiculous questions as some of you. I sometimes get more of a look or short comment about why am I not pushing her, or why would I allow her to drive 6 hours away. The truth is that I gladly push her anytime she wants and I gladly do not when she wants to do it herself, which is much oftener the case. I had to get over what people were thinking and just do what was truly a help to my wife.
I also don't worry about her driving since she is probably a better driver than me. People don't understand that a spouse's duty is to allow them to be as independent as possible. People are generally clueless about how paralysis affects her and all the many ways it doesn't

[evilmac64]

my wife says he is not much on the hard parts but he can dial a phone with his mouth and is a expert with toys that stops all other stupid comments on a dime when she offers to explain

[Trekmom]

I've been with my guy off and on for two years now and we are just now moving in together and telling people we are moving in; My family more than anything is giving me the "couldn't you find someone normal" question? Normal? Like because he is in chair he's not? THAT one is pissing me off. It's not like they didn't know we were dating I guess they just didn't expect it it to really turn into something else maybe. My friends are great though!

[Spinner]

rue2youhubby, on 24 March 2012 - 04:18 AM, said:

I've not been asked as ridiculous questions as some of you. I sometimes get more of a look or short comment about why am I not pushing her, or why would I allow her to drive 6 hours away. The truth is that I gladly push her anytime she wants and I gladly do not when she wants to do it herself, which is much oftener the case. I had to get over what people were thinking and just do what was truly a help to my wife.
I also don't worry about her driving since she is probably a better driver than me. People don't understand that a spouse's duty is to allow them to be as independent as possible. People are generally clueless about how paralysis affects her and all the many ways it doesn't

@rue2youhubby, I have gotten those looks as I am walking up a ramp next to my husband as he is pushing. Most of the time he would rather do it himself but man oh man people seem to think I should be pushing him whether he wants me to or not! I have been glared at so many times I have lost count. As for the car, my husband loathes riding when someone else is driving and would always rather drive than be a passenger!

[rue2youhubby]

I guess we always run the risk of being misunderstood. It will never compare, though, to the misunderstanding our spouses face in the chair.

[trynity7]

Omg when I first got home from the hospital my home girl adrianna told me " no...u cant feel your coochie?!" Lol wow I almost died

[munkypoop]

I'm 28 was in my accident at 23. And I get asked by social workers and whatnot stupid questions! Such as – do you know about safe sex? – Do you know about STDs and prevention of them? – Do you have your mind? After we've talked multiple times in into a conversation – do you sit in your chair outside in the summer? No. I hang from a tree stupid asses – or they have paperwork in front of them about everything including when my accident was and everything and they still ask me how long I have been paralyzed or something stupid like that! Or when the people who I see every month for the last five years ask the same question every time like; hobbies. If I watch TV on the 65 inch TV in my room, if I like dogs. While they are rubbing the dogs ears. It's like no I hate dogs. That's why we have two of them.

And then the ones that are funny where they're very uncomfortable and hesitant on asking – – does" it." Still work? That one always amuses me!

[The Black Sheep]

The most uncomfortable question I've ever been asked was from a devo on Facebook, which I didn't know at the time was a perv. He asked if I had a video chat, which is weird, no. But he asked me to record myself slapping my feet and legs because he wanted to see if the reaction was the same as his when he slapped his feet.

=\ For some reason I am still horribly traumatized by this.

The normal weird ones - can you still poop? how do you pee? do you have sex and in what possitions. The answer to the sex question is "Piss off". It's not curiousity if you're asking "which posiitions", especially if I have only known the person for a number of minutes.

[Homeskillet]

DannyR, on 21 May 2011 - 02:04 AM, said:

Next time someone asks if he is allright turn to him and say Honey are you all right this stranger feels the need to know that but doesn't know how to ask YOU!!

hahaha! I love that!

My bf is not shy and likes to make people around him uncomfortable with crazy comments. We haven't been asked any crazy questions yet, but I'm sure when we are he won't hold his tongue and come up with some off the wall answer. For example, as he was leaving the urologist appointment and the waiting room was filled with people he literally yelled out "OMG THEY CUT OFF MY ____!" just to get a rise outta these unsuspecting folks.

I'm still new but I say instead of getting upset (maybe I'll change my way over time) use humor instead.

[snaggs10]

We had a new firefighter start about a month ago and he saw Sarah come to the station after saw left he asked "Is the reason she ended up in that chair because of her hair color" Sarah is a blonde I was just stund. I told Sarah about it she laughed and when she saw him again she said "Ya Like I LIke Fell Like of my Like horse and Like Hurt My self like that cool with you dude" It was so funny to see the look on his face.

[Rolilancou]

Spinner, on 13 April 2012 - 12:45 PM, said:

rue2youhubby, on 24 March 2012 - 04:18 AM, said:

I've not been asked as ridiculous questions as some of you. I sometimes get more of a look or short comment about why am I not pushing her, or why would I allow her to drive 6 hours away. The truth is that I gladly push her anytime she wants and I gladly do not when she wants to do it herself, which is much oftener the case. I had to get over what people were thinking and just do what was truly a help to my wife.
I also don't worry about her driving since she is probably a better driver than me. People don't understand that a spouse's duty is to allow them to be as independent as possible. People are generally clueless about how paralysis affects her and all the many ways it doesn't

@rue2youhubby, I have gotten those looks as I am walking up a ramp next to my husband as he is pushing. Most of the time he would rather do it himself but man oh man people seem to think I should be pushing him whether he wants me to or not! I have been glared at so many times I have lost count. As for the car, my husband loathes riding when someone else is driving and would always rather drive than be a passenger!

This just happened to me this past weekend and I felt so embarassed and angry at my fiance at the same time because he didn't want me to push him and didn't want to wait for me while I was locking the car so when I turned he was across the parking already getting in the door of the restaurant and this woman was holding the door for him, when she saw I was with him she stared at me so angry and asked "Are you with him? GOOD" and let go of the door half way, I couldn't catch the door on time and hit the back of his chair.

Every time we go out is the same thing and I have to run for him because I can see people always asking him if he's alone and if he needs help while I'm way in the back getting stared at. I've told him numerous times that he needs to wait for me so I can open the doors but he just won't listen...agh!

[rue2youhubby]

Rolilancou, I'm a firm believer in we ABs letting them call the shots, but perhaps you mention an exception. Since he is being helped by others like the lady you describe, it might as well be you. There can surely be some compromise that protects you from coming across as one not helping him. I think I would feel like you in that case.

Still, you may be left only with the option of just speaking up and saying that your approach is honoring his wishes and this is how he wants it.

[tsh3406]

daffodil, on 20 May 2011 - 06:45 PM, said:

Hello Everyone!

I just wanted to know from the caregivers / spouses... what are the most shocking / upsetting questions or comments you get from other people? How do you deal with it, emotionally and verbally? This is something that has been bothering me more than usual lately for some reason. I don't know if it's curiosity or ignorance on their part. Usually I try to keep an open mind and label it as curiosity, no matter how taboo. I have gotten MANY questions over the years and most of the time, I'm ok with it. However, over the last year or so I've been getting the following questions or comments....

1) How come you're not pushing him? Don't you think you should be? (As I met a "friend" in a mall)
2) Don't you feel that you're kind of obligated to stay with him? What happens if you fall out of love one day? Could you leave him? (old co-worker)
3) You do know that you're going to have to take care of him for the rest of his life... right? (from "a friend")
4) Don't you miss having a normal life? (from family)
5) You're still young yet... are you sure this is what you want? (from family)
6) Maybe it's not right for you to work and leave him alone by himself - what if something happens?

*Also very personal questions with regards to intercourse... not the mechanics per say... but things brought up with appeal, positions, incontinence.

I'm I being overly sensitive here? Or am I in my right to be upset? I'm trying SO VERY hard to be polite... any advice?

Thanks!

Daff

Stop trying to be polite, and ask them how in thee BLUE HELL did they get out of the group home without a helmet on. The, exploit THEIR flaws and ask them the same damn questions. It makes them feel extremely uncomfortable.

[Maltese Cat]

the worst i've had is "well, i can see he's very nice, but it i were your mother, i'd be worried about you". This from a friend's mum.
the sex question usually comes up pretty quickly, but usually only from people i know well, so its not so bad.
the "can you have children?" question I have answered in the past with," I don't know. Can you??" (obviously to people who haven't got kids yet). It usually shuts them up for a bit when they suddenly realise they don't know either.

My all time favourite rude person was a person i met randomly, out dog-walking. She happened to be vaguely connected to my husband's family, and had heard of his accident. All she could keep saying to me was "What a stupid stupid thing to have done, I mean, some people are unlucky, but that was just plain stupid. Stupid. Oh, monumentally stupid" (he was hit by a lorry when crossing the road)

I later discovered that the same woman had accosted a colleague of mine a few years back for being on a walk with no dog! When my colleage said that very sadly her dog had been put to sleep that very morning, the woman then said, "Well that's no excuse, you must go and find yourself another dog straight away! You can't be out walking with no dog! Riduculous. Hmph!"

I'm not sure this poor woman has many friends........

[Rolilancou]

I just got one that totally caught me off guard yesterday and it came from a person I work with. She was very casual talking about a trip to Disneyland with her husband and her 2 YO kid, complaining about how ridiculously expensive it is to spend a weekend and how long the waiting lines are during the summer, etc. etc..... I'm like, "blink blink... yeah... aaaaaand?" where is this woman going with all this? wasting my precious time listening about her life I don't care for. She finally droped it and asked if my fiance and I would go with them so they could skip the long lines to the rides and if they could use his mother to get a VA discount since she knew his dad was a vietnam veteran. I could not believe what I was hearing and couldn't help but laugh. I can't believe she got offended because she was being .... serious.... OMG!

[Ratticis]

Wait, she got offended while being offesive? Some peoples children

[Tetracyclone]

This was not rooted in a question , but it was funny. I had my chair out of the car getting ready to get into it. Man walks up and says "Do you need help?"

"No, I am OK, thanks."

Wouldn't it be better to have a power chair?"

"Naw, this one gives me exercise."

Doesn't seem like that would matter much since you can't do much anyway."

I give him The Look.

"I guess that wasn't a very smart thing to say, was it?"

[Ratticis]

Well I was on this web forum once and someone asked if they thought I'd be healed in heaven

[KaterinaWit]

I really needed that laugh tonight. Thanks.

[Tetracyclone]

Ratticis, on 26 May 2012 - 02:19 AM, said:

Well I was on this web forum once and someone asked if they thought I'd be healed in heaven

You can't get into heaven with that damn crowd of ninjas in your wake, Rat. They set off the security alarms with all those knives.

[greybeard]

Tetracyclone, on 26 May 2012 - 11:07 AM, said:

Ratticis, on 26 May 2012 - 02:19 AM, said:

Well I was on this web forum once and someone asked if they thought I'd be healed in heaven

You can't get into heaven with that damn crowd of ninjas in your wake, Rat. They set off the security alarms with all those knives.

Not any more. Using nano-technology, they've developed a new ceramic blade that has an edge just one atom thick and capable of cutting through a steel hawser like ........well, like a knife through butter. Trouble is the damned blades are so sharp that just the force of gravity - and everyone knows the force of gravity is the weakest force in the whole known universe . Dammit. now I can't remember what I was about to write.

Oh yes, these blades are so damned sharp, ordinary sheaths just can't hold them in. They just slip straight through whatever fabric they are made of. Just glide between the atoms. That's why ninjas have to spend so much time flying through the air instead of just walking like most folk - except for us gimps, of course. There isn't one of them left with a full set of toes. If I had time, I'd tell you how they overcame the problem, but the pot of fish heads has just boiled over, so got to dash.