35 replies to this topic

[jscott92064]

Hi all:

I'm a newbie --my husband's injury is at T7-8 from a botched surgery on November 20, 2009. In short, a routine elective surgery turned into a nightmare. Totally sucks, but life goes on.

I'm finding having a sense of humor helps along with a thick skin to handling folks who just don't get the journey of grief one goes through when something like this happens. My husband and I will be okay --we had a strong marriage to begin with and he is without a doubt the love of my life, my best friend, and if there is a God, my husband was surely his/her gift to me!

So what's the rudest thing someone has said to you "in the name of caring"???

I've been given a few gems lately - only from family members, not friends. Strangely, though, I find myself not lashing out at these stupid. rude things said to me "in the name of caring". I want to give them the benefit of the doubt--ie. they are trying and just don't know what to say but geez, I sure wish they would just use some simple phrases like "I hear you", "what can I do for you", "is there anything you need"......

Instead, I'm getting "you must be so disappointed the surgery went well, but you know I have this friend in a wheelchair and he's doing just great....blah, blah, blah......) (Disappointed??? What a soft word --that's right up with "I'm disappointed with not getting tickets to a movie I wanted to see!!!! I don't care about this friend - whose not even married or in a relationship --right now, I care about my husband, myself, and our daughter. It's more than a "disappointment we didn't get that special toy for Christmas --this is a life-changing event!!!)

Or my mother, who lives to try to control me and compete with me--hence I live 3000 miles away --"You live in the wrong place". (Gee, Mom, San Diego -sunny weather, overall great access for disabled, lots of sports teams and FREE activities for someone like my husband........sure as hell beats MD which just got 24 inches of snow dumped on the grounds!!!)

So to all of you out there --what's the rudest, stupidest comment you've gotten???? I'd love to hear it. Totally vent away!!!

Thanks!!!!!

J


PS.....Until I'm further in my journey, I limit my verbal communication with my mother and other "well-meaning relatives". I send nice emails and thank them for their support. Also, I find this site wonderful and my husband and I are blessed to have awesome friends.

[kjm465]

Hi J,

Thanks for sharing. Wow...sounds like you have your hands full, but I'm impressed that you have been able to keep a sense of humour through it all.

When my now-hubby and I got engaged (we met post-sci) my Dad was refusing to come to our wedding, and told me that he "was worried I would have to look after my husband when we got older and would be unable to enjoy [my] own life."

I told him that that was a concern when marrying anyone (cancer, car accidents, etc. happen every day) but that following that argument no one should ever get married.

Eventually he came around; it just took time for him to realize that we were meant to be together.

Good luck!
K

[Susie_nkc]

Many people told me to leave!
I thought that to be a bit of selfish advice!

[KeepTheFaith]

Was just talking to a Dad of a C4-5 quad, two years post, who was telling his boss about how difficult it has been caring for his son. The boss responded, "Well, it looks like you bit off more than you could chew." Meaning, he should have put his son in a nursing facility.

[Saneaj]

I have tons of stuff in this area only because we've been at it for so stinkin long... but the one that I will leave here is this...

Most already have read my posts conerning my hubby's condition, so I won't go back over that... with what we are currently going through in mind... here's what was said...

I only have one grandmother left... and in such a cocky and 'told you so' manner... her and my aunt decided to let me know how all of this was may fault. They came right out and said it... 'Sheri, this is your fault. It was YOU who decided to take of the care of your husband. So whatever happens to you is on your hands (in reference to me tearing my chest muscle while turning and lifting on him). It was YOUR decision NOT to put him in nursing home where he belongs. His care demands too much out of you. You should not be taking on this type of responsibility..." Such loving relatives, huh... I have since cut them out of my life. This happened a week before Christmas. Merry Christmas to me...huh... Now, I have no family above me. These were the last of the grandparents, aunts, and such. But with family like that, who needs assasins? lol

Oh... and here's a humorous one that I just couldn't resist...

We were in Walmart, my hubby had Jenny his service dog with him. Now Jenny is a fully trained, fully certified beautiful yellow lab and is in full outfit with creditial bage on jacket fully displayed. A CSM (sort of like a Walmart manager) comes up and asks him if that is a seeing eye dog because some customers were complaining about a dog being in the store. He explained her creditials (even though the federal law states that we don't have to) and as she leaves... oh boy... he asks 'and since when do they let the blind start driving wheelchairs'...lol People just don't realize how ignorant they really are...lol

Edited by Saneaj, 01 January 2010 - 07:07 PM.

[qbounce]

Mostly, the strangest comments were by doctors, of all people:

* "Isn't that wheelchair to small for you?" (I was fitted for, and finally received my new permanent, light weight chair, after wheeling around a hospital-like klunker for 6 months).

* "Wow, you're stomach looks big!" (after coming out of the hospital, my Primary Doctor didn't hold back regarding my 'quad belly').

Friends and neighbors are good at saying stupid things too:

*
'Why do you even need your legs? Wouldn't it be easier to get around without them?" (Ican't even REMEMBER how this question arose.--haha)

* "The meek shall inherit the earth." (Some crazy neighbor flagged me down with a religeous hand-out from his church. That's some back handed way to go about getting disabled people to join the flock, imo.--haha)

I don't know, there are to many to remember. I should have written them down.

[SandieT]

Immediately following my son's accident, I had many txts/e-mail/messages of support etc. from friends and family letting me know I was in their thoughts, they were thinking of me, did I need anything etc etc. - One person sent me their "deepest sympathy!!!!" - I felt like sending a message back saying sympathy is for dead peolple, and my son is very much alive thanks!

Another lady who lives near me always stops me to ask - "And how IS your son?" (big emphasis on the 'is') I usually say fine/ok/well or one of the usual responses, and EVERY time she then asks " and is he going to walk again?" - And every time I say NO he isn't!!!!!!!!!!!! and then................... she sounds surprised!!!!!! and repeats it back to me again. He's not going to walk again? No. Oh dear what a shame. Are they sure? + Have you had a 2nd opinion. AAaaaaggggg!! I give up. She is quite elderly, so we just go through the same conversation every time, I do try and avoid her if I can, but sometimes don't quite manage it!

[snowqueeneh]

We ride on a para van to rehab. One day the driver was telling us about his rehab experience. He had a problem with his knee and it took 6 month of rehab to get back to normal. He was saying that during that six months he was so afraid he would never ski, water ski, ride a bike, blah blah blah. Paul (my hubby) was sitting right there as this guy listed every possible thing Paul will never do again. I was shocked... I didn't even speak! Later that same day... on the drive back... the driver asks me "So, when is Paul expected to get better?". OMG - I just told him what you see is what you get. He looked so embarassed. He was stuttering and apologizing. The funny thing is he really didn't know any better - he's just ignorant. Ignorance is bliss - and I miss being ignorant. I use to be really good at it.

[StillFingers]

The year was 1978, three months after my SCI, in rehab, me just starting to sit up in my chair, it was near 7pm or so when an angry voice from behind me yelled

--- "Why the hell aren't you in bed yet damnit, don't you know I have other ICs to finish tonight"

as I slowly turned my chair around, what greeted me was an angry young red faced nurse and

--- "Here, cath yourself... expletive...you can finish the rest of your IC on your own."

A foley kit hit my chest, landed in my lap, she ran off in tears.

I couldn't speak, well I could whisper...kinda. Ya see, my vocal cords were damaged during my initial surgery and had not healed yet. I attempted to explain why I was not in bed yet, but wasn't quick or loud enough. She did not see the remains of the crash cart parked in the middle of our room. Somehow she had just missed the code blue, our buddy and the emergency crew racing down the hall.

Another nurse arrived in about ten minutes, rather pissed off, came up to me and said...

--- ''Why aren't you in bed and what did you say to...nurse's name...to upset her?''

Unable to speak up, I whispered

--- "There's no one here to help, they just took Ben to emergency...I tried to explain...what can I do?"


Fun times in rehab, all was resolved, personal issues/emotions spilled out into the workplace, the young red faced nurse made an apology the next day. Shit happens, perhaps it's good I could only whisper, it kept my anger/language in check...everyone has bad days. As far as the ignorant/innocent comments that the public makes, well, too many to mention...three decades of wtf did they just say...nothing surprises me anymore.

Edited by StillFingers, 01 January 2010 - 11:21 PM.

[hooplady]

While Tom was still in ICU a neighbor asked me if he was going to come live with me. A bit confused, I answered no, because my house is two stories and the bath & bedrooms are on the second floor (she already knew this). She said "Well he can just haul himself up those stairs!" I was dumbfounded, I think I just smiled. Later I thought about it and I guess she just didn't realize what being paralyzed with no use of trunk muscles truly means. It's more than just dragging around your unused legs.

And actually I had a giggle trying to figure out, if he did get upstairs, how the heck would he get down? Thump, thump, thump....

[jscott92064]

Thanks for sharing!!! I'm going to come back to this thread time and time again because I'm sure my man and I will have more "gems" to come. It helps to know we are not alone. Some of your "gems" outshine mine!!!!

It's still early in the process for us and we have not gotten around to telling everyone about his situation.

I'm also finding there are some people who are so incredibly upset that we end up comforting them.

You probably know the types --the ones who start bawling nonstop to you about it.

It's understandable for folks to be shocked --I get that.

And I do my best to comfort them and if it turns out they need a "second session", I let them get that therapy elsewhere and distance myself.

To everyone out there, sorry you had to deal with such ignorance and rudeness. Totally sucks even more when the professionals do it!!!

I think most people mean well and generally just don't know what to say and then there's the ones who "if there's nothing worthwhile saying, they will say it"!

hooplady, on Jan 2 2010, 01:03 AM, said:

While Tom was still in ICU a neighbor asked me if he was going to come live with me. A bit confused, I answered no, because my house is two stories and the bath & bedrooms are on the second floor (she already knew this). She said "Well he can just haul himself up those stairs!" I was dumbfounded, I think I just smiled. Later I thought about it and I guess she just didn't realize what being paralyzed with no use of trunk muscles truly means. It's more than just dragging around your unused legs.

And actually I had a giggle trying to figure out, if he did get upstairs, how the heck would he get down? Thump, thump, thump....

The "thump, thump, thump" was funny!!! My husband and I joke about his "plumber's crack" because I'm always pulling up his pants as he does his transfers. That and how I'm "getting a feel" when I grab his pants.

Then there's his gorgeous neck --I mean --it's right there in front of me as I'm pushing him sometimes --how can I resist kissing it!!! We joke about giving him this huge hickey!!!

[allis53ca]

right after i got here to the rv park, i was walking frisco (ok, frisco walked, i rolled) and a guy is out washing his car and stops me to say hi...15 seconds into our introduction, he proudly points out his handicap plates and declares "see? i can relate...i'm handicapped too..i'm on ssdi, they say i have a PERSONALITY DISORDER ! ".....i paused, then responded "well, its obvious you don't need a second opinion"........the conversation had to be ended, when he wanted to discuss how it sucked that he had to wait for a hc parking spot for 5 minutes at 7-11 that day..whatafukkingtool

[dangerousdave]

Dangerous is once more out of his 3 wheeled contraption with them both on thier sides

Hi there, do you want a hand up on your wheels .. or .. should I phone for a ambulence as your foot is at a irregular angle.

Help me up you fool and get me a beer. The foot can wait till I get home (in 2 days time)

[edlee]

I guess the hardest for me to take is the "YOU"RE SO BRAVE" bit,, . What?? I'm brave because I'm still alive??? Because I haven't offed myself yet???

We all do what we have to do to keep going,,,, crip or AB,, same thing
ed

[Saneaj]

Here's the latest from my hubby's wonderfully loving sister....

"When is he FINALLY going to die! I'm tired of all of these near misses! Doesn't he REALIZE how this stresses ME out!"

Stresses HER out...ha... she lives over 6 hours away and NEVER visits him and has NEVER helped me with him over these past 17.5 years! Lovely huh... to which I handed her her head back in return...lol

[Wheelsonfire]

"Jeez, talking to you is the very same as talking to a normal person"

uuuuuuummmmmmm pissed me off no end!!

[gordonr]

The old standard:

(which I have had from near friends and on one occaision from a complete stranger in the street)

"If something like that happenned to me I'd just kill myself"

To which the correct answer (the product of long and careful thought) is:

Why wait?

-G

[quadinva]

i went on a cruise this past week and got a couple standard comments: security screener in the airport (both going and coming) 1)"Go ahead and stand up for me" my response: pretended to try for a min then said "nope, havent been able to for a year and a half, don't think im gonna start today" 2) security screener in 2nd airport:"Kick your leg up so i can check the bottom of your shoe" me:"nope, not gonna happen"

guy on cruise:"i can relate to you, i live with IBS eeveryday (irritable bowel syndrome)" and "let me see your hands, im going to wakee your fingers up" hmm good thinking, hadnt tried that

[allis53ca]

"let me see your hands, im going to wakee your fingers up"

and that, would wakee my elbow into someones teeth....baby talk me and i might kill you

[pistol_pete]

The first time my wife saw her parents after my accident her father was a blubbering mess. Instead of the words of strength and support she was hoping for she got a wailing, tearfull, " Aaahhh your life is ruined now, finished... it's all over, it'll never be the same, aaahhhhh!!!!"
Poor old bastard, he was pretty upset.
It was the normal reaction from someone pretty ignorant about SCI. I don't judge him for it because I was just as ignorant before my accident, as were most of the people here, am I right?
That's why I don't get angry at stupid comments, because I remember back to the time I was just as stupid.

[greybeard]

Lot of wisdom in that reply, Pete. Folks tend to forget.

[Texaswheelz]

gordonr, on Jan 3 2010, 07:09 PM, said:

The old standard:

(which I have had from near friends and on one occaision from a complete stranger in the street)

"If something like that happenned to me I'd just kill myself"

To which the correct answer (the product of long and careful thought) is:

Why wait?

-G

Yep, the worse one of these I ever got was when I was living in college with a friend from high school. So I knew him from high school, had lived with him going on 3 years and we got the news that a guy we both knew from our home town that was 5 or 6 years older then us had wrecked and they were saying he was going to be a para. At the time there were 3 or 4 of our friends over at the house. My roommate says "man, i don't think I could handle it, I feel sorry for him, if it was me I'd rather have died in the wreck". I just sort of set there dumbfounded as it was one of my closest friends, that knew I was completely independent telling me he'd rather die then live like I did. It's been 15 years and I'll never forget that, as much as for hearing about the other guys wreck as for hearing about how others really thought about me.

Then as you said you get it from strangers that you'll start talking to and then they start saying what a inspiration you are and how brave you are to live life they way you do, if they ever had to go through it, they probably couldn't and would just kill themselves. Yep, I must really be an inspiration.

[Tetracyclone]

Tex, There is nothing wrong with being inspirational. And think! all you have to do is get your shoes on in the morning.
In regards to what your friend said though, its easy when it comes from a stranger, but when a remark like that comes from a close friend your defenses are down and the arrow flies straight to the heart.

[gordonr]

Texaswheelz, on Jan 4 2010, 01:20 PM, said:

Yep, the worse one of these I ever got was when I was living in college with a friend from high school. So I knew him from high school, had lived with him going on 3 years...

Tex,

Apparently there really is no way for a lot of ABs to ever understand. And as Pistol Pete has pointed out, perhaps we were no better in the old days. I know I probably wasn't.

I used to get quite mad and vocal. Now I think I would just say, "You know, lots of people say that, but when the time comes, most do choose life." Before, it was more like, "Yeah well if I was YOU, I'd want to end it right now!"

Same with people "helping" me. I used to think, "What the hell? if I needed help, I wouldn't BE here (with the car, with the kids, etc)"

And I had a good line for that:

Q. Do you need help

A. No thanks, and you?

Today, I smile and say, "No thank you, this is just routine for me, but it is kind of you to offer". Because these really are thoughtful, although not very experienced, people.

I don't know if it is my age, the lower testosterone level, gradual self acceptance or real wisdom, but I don't get into as many fights as I used to, either with the people close or the people in the street.

Best Regards,

Gordon

[qbounce]

Texaswheelz, on Jan 4 2010, 06:20 AM, said:

Yep, the worse one of these I ever got was when I was living in college with a friend from high school. So I knew him from high school, had lived with him going on 3 years and we got the news that a guy we both knew from our home town that was 5 or 6 years older then us had wrecked and they were saying he was going to be a para. At the time there were 3 or 4 of our friends over at the house. My roommate says "man, i don't think I could handle it, I feel sorry for him, if it was me I'd rather have died in the wreck". I just sort of set there dumbfounded as it was one of my closest friends, that knew I was completely independent telling me he'd rather die then live like I did. It's been 15 years and I'll never forget that, as much as for hearing about the other guys wreck as for hearing about how others really thought about me.

Then as you said you get it from strangers that you'll start talking to and then they start saying what a inspiration you are and how brave you are to live life they way you do, if they ever had to go through it, they probably couldn't and would just kill themselves. Yep, I must really be an inspiration.

Tex,
I'd bet you $10.00 your friend, who'd grown accustomed to your disability, completely forgot that you were paralyzed, and in a chair. Honestly, we live with it day in & day out. But, how many times do we hear our loved ones, relatives and friends say that they "don't even see the chair."

[Saneaj]

My brother-in-law's immediate response to my hubby's accident was so charming...

"If I ever lose my dick like he just did, just kill me"

Please excuse this... I know it's a little on the vulgar side... but then so was he. For some reason he equated SCI with losing his penis.... my hubby broke his neck not his ummm.....very loving in-laws...lol
There was no response from me on this statement. As I felt it deserved none...

[ericr]

The stupidist thing someone said to me was from who else?? ME!!!


It was the first few weeks out of the hospital and I went to the mall to get some new clothes that actually fit. I asked the girl for a pair of jeans in my size and she came back with a pair that was identical except for the back pocket I argued with her for 5 minutes saying that they're not the same and I dont like the ones she had. She had this look on her face like are you serious nobody will ever see the back of your pants anyways!!

So i felt it was necessary to say that to her I could have swore she pissed her pants!!

[E-DOG]

KeepTheFaith, on Jan 1 2010, 09:57 AM, said:

"Well, it looks like you bit off more than you could chew." Meaning, he should have put his son in a nursing facility.

Or smothered him with a f*@king pillow!

[E-DOG]

Saneaj, on Jan 1 2010, 11:01 AM, said:

He explained her creditials (even though the federal law states that we don't have to) and as she leaves... oh boy... he asks 'and since when do they let the blind start driving wheelchairs'...lol

'Bout the same time they let ignorant dipshits start working at Walmart!

[JohnnyO]

I had numerous spine and leg surgeries while growing up. When I was able to walk, I had a very weird leg and hip motion/gate that made it look like I was drunk. After one of the leg operations (I was about 12 years old), I was getting back up on my feet and exercising by using a walker. One day I was outside using the walker and my older brother was along for the walk making sure I didn't trip and fall flat on my ass. He was watching me walk and all of a sudden he says….”Hey, walk right/correctly! “

Well idiot, if I could walk “right” don’t you think I would? I laugh at that remark to this day. Gotta love family no matter how many times you want to smack them upside the head.