Please stop telling the new paraplegic you know he'll walk be walking soon...

Well, yeah, that’s a factor, but seriously, after 20 years of marriage to someone disabled I’ve met all too many people who just can NOT wrap their heads around the concept that a cripple could have an interesting, exciting, meaningful life. We have encountered people who are obsessed with curing him - prayer, diet, crystals, all sorts of woo-woo - and just don’t get it that we’re happy. His physical limitations are an annoyance more than a tragedy at this point. WE aren’t obsessing over it, neither should they.

Would we like it even better if he was physically normal? Sure. But we also know that it’s medical science that would do that, if anything, and right now the science can’t do it. When there is a “cure” fine, call us, and assuming it’s affordable and doesn’t have some other bizarro whacky side effect(s) (in other words, the risk/benefit ratio is favorable) sure, I think he’ll go for it. Meanwhile, we aren’t putting our lives on hold waiting for it. As Jamie says up thread, there’s a life to live and you don’t get do-overs on life.

Or another way to put it, we focus on can, not can’t.

That makes sense. And yes, it’s a very small-minded way of thinking.

Meant to give you a big +1 on this. SO true. Sure we all want to make to 100, but once you have a pretty good idea that that is not going to be your fate, how in hell is it a good idea to be in denial about it and spend what time you have obsessing over trying to change it? Isn’t it better to maximize the possibilities for joy and get as much right as you can while you are here?

Unfortunately many people simply cannot handle disability and disease and so if the focus isn’t on changing it, they can’t deal with it at all and have to bail.

We were growing concerned about this young man’s ability to cope with his situation; like the majority of spinal cord injury sufferers tend to be, he’s a particularly fit, vital, active young man whose greatest joys in life come from thrill seeking physical activity (which is why most spinal cord injury happens to men like that, vs. couch potatoes - they are the ones out there doing stuff that can lead to breaking your neck). He is a pro-level skateboarder and a model and there are tons of pictures of him skateboarding that are astonishing…and of course heartbreaking, too.

Anyway, my point… we were concerned about how he’s going to face this or if he was facing it at all, since he seemed to be in a bit of denial. (Not that anyone was forcing it down his throat, there’s general agreement that he will take it in as he needs to- he only just today got the trach removed! He’s been fighting to breath for the past month because of a collapsed lung and 10 out 12 ribs broken!) Well, a couple of days ago he posted this on his facebook page. I was thrilled, because to me that said exactly what I wanted to hear: he wasn’t going to let his situation define him, and he defines himself as a vital, athletic, thrill-seeking person and he’s already looking at ways he can continue to be that within the context of using a wheelchair.

Of course, there’s the fact that my other reaction was “Oh great, so you’re going to do that shit and escalate from para to quad!”

Which is what I imagined from the beginning… I see him as ending up like the guys in Murderball, totally being his athletic dude thrill-seeking self no matter what. And that’s a great thing.

This is a great thread. Sometimes people need to be armed with the right words, and this is a way of teaching us what to say.

The rules aren’t hard. When you hear something that someone is excited about say “I’m so happy for you” or something like that. When its disappointing news say “I’m so sorry.” Remember its about them - not about you and it isn’t your opportunity to share the story of your Great Aunt Enid’s remarkable recovery from Ebola or your own daughter’s high school graduation and subsequent enrollment in Stanford with a full scholarship. If you have experience that is relevant, let them know, but don’t foist it on them (“I’m a breast cancer survivor, if you need any help, or advice, or just a shoulder to cry on, let me know.”). Otherwise, give them a chance to share their hopes and their fears.

Also, just like it isn’t your job to give them false hope, it isn’t your job to remove it either. If the family wants to believe their son will walk again, say “wouldn’t that be wonderful.” If your co-worker thinks her unfaithful, alcoholic boyfriend will make a wonderful husband “I really hope so!”

I have a nephew who was in a terrible car crash a couple years ago. His body was (mostly) intact, but his brain was terribly injured. They weren’t even sure he’d wake up. Brain scans showed massive diffuse brain injury, signs of pin-point hemorrhages everywhere.

We’re thrilled that after rehab and a couple years of struggle he has been able to re-enter school. Wonderful feel-good story? I guess…

What a lot of people don’t want to see is that he is not the same. He will never be the same. There are some things we do easily that he can no longer take for granted. He struggles with things most of us take for granted, like remembering stuff and math and exercising good judgement and developing and following a plan of action. He’s managing, he will be able to take care of his own affairs and live an independent life, but no, he’s not the same.

He’s not resumed his honors courses and heavy math/science emphasis. He’s now planning on a career as a cook.

Some people in his life has lamented that this young man, of formerly formidable academic abilities, will now be “just” a cook. They miss the point. HE has adjusted to the fact that no, he can’t do some things he could before. Cooking is something he has always enjoyed, it’s a connection to who he was before as well as who he is now. He can do well at it. How many of us are fortunate enough to embark on a career we can really enjoy?

Yes, his accident interrupted his life. It did not, however, end it. Yes, he’s going in a different direction than before. Different, that’s all. He has set his sights on something he can reasonably expect to accomplish, even excel at. I think he is still a hell of a lot smarter than those who hold out a vain hope of things somehow being exactly the same as before.

(bolding mine)
OMG yes! If I had a dime for every time I had some random stranger come up to me and felt the need to start telling me about their “great uncle who was amputated from the knee down on his left leg after WWII”, I’d be rich. They think they can bond with me because they actually know another human being who has suffered some degree of physical disability or severe injury at some point in their lives. It’s rather annoying and boring. As if I have any interest.

I don’t expect people to know what to say when I try to explain certain things. Like why I move the way I do or why I’m not very friendly or emotional. I don’t think people mean to say heartless or stupid things. It’s just that I think most people are taken aback by imperfect lives and outcomes and really don’t know what to say.

I remember, as I first took my first “big girl” job, worrying about what people would think once they discovered that I’m eccentric. I tried to hide it at first, but the phoniness was imperfect and driving me to a sad state. So because now I “act” less and just try to be myself, people treat me a certain way. Tenderly, I guess. Like we had a white elephant exchange today, and I unwrapped a really good gift. One lady in the group asked everyone not to take my gift from me* and that was that. All the other good gifts got swapped around a few times, but no one took mine. I was both touched and saddened at being treated differently.

Anyway, enough rambly. My point: They know something’s up with me. I don’t know what they “know” or how. I just know there’s an idea out there that I’m a little different and in a pitiable way. There are a number of reasons why I think this, and one of them came out several months ago while I was talking to a coworker about another coworker’s upcoming wedding and about how excited she was. Apropos of nothing, the coworker said, “I just know one day you will find someone too!” Like, huh? Where did that come from? I’d never talked to her or anyone else about my life in that way. So I told her that I was fine with whatever happened to me. Being married isn’t one of my plans anyway. And she came back with, “I don’t care. I just KNOW it’s going to happen! You have to have hope!”

Again, there was that sadness again. It didn’t matter to her that I’d told her I was fine with my life the way it is. She still wanted to wrap things up with a little red bow and clap her hands at the imaginary happy ending. Because obviously my life is not good the way it is now, and I should at least want to make it better.

But I just shrugged and said okay. Whatever.

The rules are hard for some people. They may know exactly the right thing to say when someone’s parents die because they’ve lost parents too. But throw a situation at them that they’ve never encountered before, and sometimes stupid comes out. I’m not defending this at all. I’m just saying that sometimes accepting the hand that life deals you means also accepting that people are not going to understand it. You learn to handle both.

*We do the “pick a new gift or steal someone else’s” thing.

Here’s a great fashion shoot this young man did for Interview magazine. Very cool pictures of him wearing what he called “lame-ass” clothes while skateboarding…

Well, your mind is obviously in perfect working condition, so are you saying you have a visible disability that makes people sort of assume you have some mental deficiency, too? How completely weird!

My son skateboards and like your friend is marvelously athletic. I know how tragic it would be if he couldn’t. Not that he wouldn’t be able to find ways to enjoy life if he couldn’t, but it would be a great loss to him. My condolences to your friends.

How completely common - a LOT of people assume physical disability means the person is also mentally retarded.

They are actually quite hard for me as well. Not in theory, in theory, they are easy, but in practice I’m so darn opinionated that I can come across as judgmental. Or so confident in my knowledge that I want to “fix it.” My tongue is red and bloody from not saying “What?! Don’t marry him, he cheated on you three months ago” or “Well, it was probably for the best, I wouldn’t want to live on life support” or “how in the hell did you afford that?” Instead of “I wish you every happiness,” “I’m so sorry for your loss” and “Its very nice, I love the color.” And because I have to bite my tongue and instead say frankly cold civilities, I come across as - surprise! - cold. But a cold civil bitch is better than a judgmental bitch.

(I tend to the pragmatic pessimist in my unwelcome thoughts that I try really hard not to articulate out loud. I’m more likely to say “I wouldn’t pin my hopes on 5%” than “oh, he’ll walk again, don’t loose hope!”)

Yeah. I suspect this is the same force behind the inevitable “Where was she and what was she wearing?” questions that surface when there’s been a rape. We really, really want to believe that there’s something controllable - or at least logical - behind these things. And we can do a lot of damage while trying to reassure ourselves.

Not a mental deficiency, but mental craziness. :slight_smile:

I have tics and a gait that is strange sometimes. I am not disabled IMHO. But I’m no longer able to play off my movements as I used to be able to do. I also cannot give anyone an explanation when they ask, since I don’t know what’s going on.

I’m also quiet and very introverted. These two things alone are gossip-fodder.

I have a friend who is paraplegic. You can tell a lot about how well someone in a chair gets around just by looking at the chair- if it doesn’t have handles, for example, that person is getting around on their own.

When we lived in the same city and would hang out people would get all pissy at me when I didn’t open doors for him.

I work in geriatric rehab, and the serious false hope cases are so heartbreaking sometimes. It’s like, okay, your loved one is 99 and has pneumonia, let’s be realistic here.

Those would depend a lot on whether you also knew the deceased or not. I can’t remember having gotten a hug from my aunt through my childhood, but when I gave her one in my cousin’s funeral she hang on for dear life; people who offered words were met with holding-back-tears politeness, those of us who hugged her got crushed. I didn’t tell her anything, I just offered a hug and she took it; when my uncle told some funny stories of my cousin’s childhood, I and my other cousins (including the brothers of the dead one) made appropriate remarks and even laughed a bit, but letting uncle do the telling (he’s always been a storyteller, he’s a writer and poet among other things).

When it’s someone I don’t know well, I say “sorry for your loss”, but I’m never the first person to bring it up, because I hated it when people I didn’t know from Adam would stop me on the street and lay on platitudes about Dad’s death. The ones who told me specific details, things that were about Dad and not about the need for politeness, those were fine and welcome, but sometimes people manage to sound like they got their brains at Hallmark’s - and for some reason, those seem to be the same ones who don’t ask “do you have a minute?” or realize that when you’re loaded with a shopping cart plus two additional bags of fish is really not the best time.

Broomstick, I love your story of the cook. I am so stealing it.

Just as a side note, almost anything other than “He/She’s in a better place” will be alright. If you say “He’s in a better place” to the wrong person, you may find yourself in that place in short order. :wink:

While it’s easy to see the OP side, if the OP wrote about a guy who was speaking realistically to the new paraplegic and said, “Well don’t get your hopes up,” the whole board would be down on him for speaking the truth. You can’t win here.

These people encouraging someone aren’t doing it out of malice, they are tyring to be supportive and you have to give them credit. I realize that people go through tough times, but we all do.

I’ve seen people have loved ones in a lot of pain, then die. Then someone will say, “Well at least she’s a peace now,” and have someone go off on them, “You saying she should be dead…” or whatever.

When someone tells you “You will walk” or “I know you can” it isn’t said with expectation or as a dare. It’s just something people say. And if a person can’t handle something said to them with understanding and kindness, heaven help them when they get into the real world and have to adjust.

My first child well over 20 years ago, I lost at 7 months pregnant. People didn’t know what to say. I got everything from “Sorry” to “Well it’s best, as there was something wrong with the kid”

I didn’t like what was said sometimes, but I always knew nothing was said to mean with malice or to be mean. They were trying to be kind. And I tell you I would rather have them said something to me in kindness than ignore it all together.

That’s the problem with the world, it isn’t all about you. Whether you’re handicapped, lost a kid or whatever, the world goes on and it just isn’t you. So don’t take it so personal and just be grateful that someone, anyone cares enough to show interest.

I think people are understanding that it is “just what people say”. And that’s the problem. People should be thinking before they speak, if they really care about making someone feel better.

People have suggested some good things to say that are equally encouraging. Like “You are strong. I know you’re going to make it through.” Or “Whatever happens, I know you are going to be alright.”

If I were on my death bed and I knew it, the last thing I’d want to have to deal with were people telling me that I was going to walk right out of bed in no time at all. Or that I need to keep fighting. Once a person has accepted what’s going to happen to them, they need people to support them and make them feel like it’s still not the end of the world. Anything else is arguing with them or trying to make them feel guilty for not putting on a happy face.