23 replies to this topic

[Califanna]

I recently came in contact with a newly injured person and after speaking with them I wondered perhaps if I might be overwhelming them. So how much is too much to share with a newly injured?

What are priority topics when you are first injured? Insurance, Disability Payments, Transportation, Physical Therapy, Rest, etc...?

Opinions?

Edited by Califanna, 05 September 2011 - 01:33 AM.

[KayDub]

I just made a post about running into a guy on the train who decided to share almost 30 minutes worth of information with me, in a patronising and condescending way. I felt awful after and about as insecure as when I first left hospital in my chair. I'd consider myself newly "injured" (I got sick), I got out of hospital in June. When I meet other people in chairs and start talking, the first thing I guess I'd say I want is the camaraderie, and then to chat about something other than the chair. If you're becoming close with someone who's newly injured they might want more advice from you. I think the key is all about letting the person guide the conversation. I'm lucky to have found this site and have had loads of my questions already answered and have started the long, never ending process of feeling comfortable about myself (no I don't need a definition of AB or to be told that I'm pushing my rims "wrong"). Not all newly injured have been so lucky.

Still, I'm a firm believer that if people want advice/information/help they'll ask. Same thing about topics. As a just turned 23 year old student I might not be wanting to know about disability payments as much as an older individual. Housing, public transport and health situations vary for everyone. I don't have a SCI so I might not want to know about AD or B&B as much as other people. I think it's really difficult to say there's one topic all newly injured/new chair users are itching to know about. It really depends on the individual.

For example I just met a group of chair users at my gym (mostly amputees, one is a C 4 quad though, they're all vets). We started chatting and I started asking one of the guys about his chair since I'm still in a loaner and he gave me some really great advice and throughout our conversation he shared some of his stories and I shared some of mine, but not in a one sided manner. That was a great experience and I see those guys a lot now, compared to my negative experience with the guy on the train. Hope that answers your question! (And not to say the advice you gave the person you're talking about was negative like what I experienced! Just sharing my latest experience)

Edited by KayDub, 05 September 2011 - 01:44 AM.

[tomsov]

in my opinion it is a person by person basis. I am a paraplegic and open about my injury. in fact i start off by making jokes about it. However some people are extremely self conscious about it. i myself have rolled into a group of people who are in wheelchair and been the awkward loud person. really in my opinion what id do is small talk first. questions involving how the person was injured and things along those lines id shy away from. talk to the person like a normal human being. if you are talking to them as a newly injured person trying to give advice and things along those lines, really the way id do it is go back to the same place they currently are and tell them what you went through. for me id start off prior to my accident and tell him what i lost. like my car my two motorcycles my job ect. then tell them the bad before the good. that way the good days then out weigh the bad. the other thing id do is show them the movie murderball. for me that movie kinda was a way to learn things that were not corney like the multiple movies the nurses gave me about cathing, sex, bowl and bladder bullshit. it show life being lived and the mental realities of someone who is a para or quad. this shit is overwhelming. Tell them the truth but make sure they walk away from it knowing what this is going to in tale. good luck

[Aparr]

Good question. I'm only 2 years post and I have found that I have a lot of questions of other disabled people I run into. My suggestion~strike up a nice conversation and when you find out they are newly injured let them 'pick your brain' with questions they may have. If they don't ask maybe you have a question for them to be able to relate to one another.
April

[pinkcloud]

hi califanna

I personally, with regards to the health side about things, never ever look at what thigs may happen, because sci may never ever effect me in the way it affects others, so i live by the rule..if i dont have it now, huge chance it wont ever happen. And if it does i'll have enough to deal with it then.As a friend may i suggest you do th same,if not the worry may overpower you too and ts awful for a friend to feel scared too.

90 per cent of the time get people telling me i ought to sue the nhs...

90 per cent of people tell me to take things easy, be careful. This is lovely yet we hae to push past boundaries or we never know what works and will work again. Really not nice for others to see the physical pain yet we will stop when we have gone way to far...

Money/help with care, its always helpful to get what we need, such help is not avertised and this is lfie as we never knew it before.I learnt that its very hard for others..including me..to just nt bother and struggle as it can be too much to deal with such things.

The further we get with sci, the more we see others ignore us..to have others reach out to us is fantastic...lonliness is a horrid place.

one thing i detest is others saying 'i know someone with half a body left whose happy'..i cringe...why? because i have many others whom tell me 'i have nothing to worry about in life..look at you coping'...nooooooo !!! Their pain is as bad as mine if its the worse they have had yet....and am glad they think headaches are the worst thing ever...or else it means they have to deal with what i have too. i compare no one to anyone, i hate even more 'its all right for you, your so strong'...noooo !!! i am this strong only because i been unlucky and had to be tough..not by choice. And i dont want no one to have to struggle hard shite to be able to get real strong.

Its NOT the strongest who survive...the weakest whom dont...its them whom adapt to change that survive....and any help you can offer helps them cope with that change.

Good on you great friend...i never can have enough of people like you in life....you are worth more than material wealth just as your friend is to you eqully for him/her to trust you to help them learn to look after themelf at their vulnerable times

[wheeliebear75]

Being that I was injured 21 yrs ago I've found everything from to; had one guy on a trolly tell me "If you can move your foot you're not a paraplegic & you couldn't have broken your back!" to another para who informed me I'm "TOO happy!" (Oh like what, that's now a bad thing?), but have also had a couple who once we got to talking the chairs disappeared.

I think everyone is different; sometimes we may just be having a "bad day" or be feeling more like keeping to ourselves, & other times may have been wanting someone else who they could ask questions & bounce an experience or two off of someone who has more time under their belt.

Maybe just introduce yourself & by letting them know who YOU are & why you're in a chair etc., then that would be a good way of leaving the door open for THEM to decide to come in for a conversation or just stay on the porch & exchange pleasantries.

Overwhelming or warning/advising.....hard to say. I know in the beginning I WAS overwhelmed & it often felt like some sort of bad dream I kept hoping I would wake up from, then it was that monster I wanted to hide from....it wasn't until maybe 5 yrs or so later that I was even able to ACTUALLY "accept it".

I hope this helped in some way.

[ClaraTaylor]

First thing I wanted to know... that I wasn't alone

Second thing... that life carries on as normal.

[Scribbler]

I'd only answer someone's question's if I've been through that experience; the same as I try to do here. I never give advice, I try and explain what worked for me.

Scribb's

[mellowgator]

Califanna, on 05 September 2011 - 01:31 AM, said:

I recently came in contact with a newly injured person and after speaking with them I wondered perhaps if I might be overwhelming them. So how much is too much to share with a newly injured?

What are priority topics when you are first injured? Insurance, Disability Payments, Transportation, Physical Therapy, Rest, etc...?

Opinions?

anna,

i'd let the person ask questions and i wouldn't try to overload him with info.

[Ginny]

I think that most newly-injured people are still in shock over their situation and wondering how things will come out for them. As we all know, it's a waiting game and that may be new information. I had no clue when I was injured, how long the recovery process could take. Encouragement in the road ahead is essential for anyone newly injured. They can then lead with questions they may have. Sometimes it's just nice to discuss something other than SCI. First and foremost, we are people and only a distant second, we are injured people.

[Apparelyzed]

I think the best thing you can do is listen to what they say.

Then pick up on any areas they are concerned with and contribute your advice.

Ideally, if you are in regular contact with them, ie, you're in hospital with them, or they are in a group you socialise with, you can build your advice with generalised advice, and as you get to know them, focus on any specific topics.

There is nothing worse than information overload, as most of it will either be forgotten, or label you as a "know all".

Simon

[Califanna]

Ginny, on 05 September 2011 - 05:19 PM, said:

I think that most newly-injured people are still in shock over their situation and wondering how things will come out for them. As we all know, it's a waiting game and that may be new information. I had no clue when I was injured, how long the recovery process could take. Encouragement in the road ahead is essential for anyone newly injured. They can then lead with questions they may have. Sometimes it's just nice to discuss something other than SCI. First and foremost, we are people and only a distant second, we are injured people.

I so agree with you about 'still in shock over their situation' and that is why I wanted opinions. Your comment really hit the point I really wanted to hear. In the past, a long time ago I was part of a group that mentored newly injured by allowing them to come to our homes for a weekend so they could see how life is for someone in a chair. It worked really well and I wish I could start another group like that one. But in the meantime, I am a little rusty and wanted advice. Thank you. Thank you.

[Niceparalegs]

Well, I am 2 mo new complete para t11. From my experience there are soooo many things I wish people had let me in oninstead of having to figure them out. help us newbies...better overwhelmed than unprepared!

[isobar]

I guess it may depend on what state on mind a person is in and if they are receptive to receiving input or help at this early stage of their ordeal. There's so much to digest and wrap your head around. You may have to give them time ...... they may let you know when they are ready dont try to force anything on them.

[knoestie]

Califanna, on 05 September 2011 - 01:31 AM, said:

I recently came in contact with a newly injured person and after speaking with them I wondered perhaps if I might be overwhelming them. So how much is too much to share with a newly injured?

What are priority topics when you are first injured? Insurance, Disability Payments, Transportation, Physical Therapy, Rest, etc...?

Opinions?

I'm 2 years post, still have lots of questions, every question answered brings along a new one! Best advice I can give you: just be there and let the person know that he/she can come to you with questions.

[happywheels 88]

Ag

Niceparalegs, on 03 February 2012 - 08:08 PM, said:

Well, I am 2 mo new complete para t11. From my experience there are soooo many things I wish people had let me in oninstead of having to figure them out. help us newbies...better overwhelmed than unprepared!

Agree with niceparalegs, as a newbie myself I'm like a sponge soaking up what I can from anyone offering advise, good or bad! Good planning prevents panic. Share the wisdom

[Zack]

I'd listen to see how much they're aware of, and use your best judgment of how theyre coping so far to decide.

[debdeb606]

I personaly wanted to know everything i could

[jayinva]

when i was a newbie the first thing that helped was just seeing that life went on. everyone kinda comes to grips with disabilty on there own terms so i would let them ask what they want to know.

[Lilyberry]

I think its best that you tell them everything whether its good or bad. After my injury all I was told by all my doctors, nurses and therapists was that I could still live a full life. I dont know if they did that because I am young and they didn't want to scare me but I actually believed them. I wish they would've told me about all the complications that come with an sci.

[Ratticis]

Lilyberry, on 17 May 2012 - 12:51 AM, said:

I think its best that you tell them everything whether its good or bad. After my injury all I was told by all my doctors, nurses and therapists was that I could still live a full life. I dont know if they did that because I am young and they didn't want to scare me but I actually believed them. I wish they would've told me about all the complications that come with an sci.

Well, to be fare, it's not like they lied to you. They just didn't tell you "everything", though in my experience it's most likel;y because they didn't have a clue. Sadly, that's the way it is in most of the medical comunity. I got the opposite, some asshole telling me I should be depressed because "I'll never do . . . again and I won't be able to . . . " after about 5 minutes I told him to piss off and not to bother coming back. And when I asked him why I wouldn't be able to do whatever, he had no answer.

[Lilyberry]

Ratticis, on 17 May 2012 - 02:18 AM, said:

Lilyberry, on 17 May 2012 - 12:51 AM, said:

I think its best that you tell them everything whether its good or bad. After my injury all I was told by all my doctors, nurses and therapists was that I could still live a full life. I dont know if they did that because I am young and they didn't want to scare me but I actually believed them. I wish they would've told me about all the complications that come with an sci.

Well, to be fare, it's not like they lied to you. They just didn't tell you "everything", though in my experience it's most likel;y because they didn't have a clue. Sadly, that's the way it is in most of the medical comunity. I got the opposite, some asshole telling me I should be depressed because "I'll never do . . . again and I won't be able to . . . " after about 5 minutes I told him to piss off and not to bother coming back. And when I asked him why I wouldn't be able to do whatever, he had no answer.

Your right they don't know. After all they're still able to walk. That's why I don't take advice from anyone who hasn't gone through what I have. No matter how much they say they understand, they really don't.

[Ratticis]

Best advice I can give would be don't flood 'em with too much all at once and don't BS them either. There's a fine line between honesty and scare tactics. Every injury is different so there is no one answer for everyone. Answer their questions the best you can and if you don't know, simply say so. But most important, point them towards this site for an unlimited wealth of information (and sometimes misinformation and stupidity )

[Edinburgh Colin]

Scribbler, on 05 September 2011 - 03:50 PM, said:

I'd only answer someone's question's if I've been through that experience; the same as I try to do here. I never give advice, I try and explain what worked for me.

Scribb's

As usual Mike said it perfectly in very few words.
Only thing I would add is if the questions were in a particular direction I'd maybe try and give a more comprehensive answer or try and relate an example from life that the patient would be able to connent to.
EC

Edited by Edinburgh Colin, 17 May 2012 - 05:45 AM.