28 replies to this topic

[mkie]

so first of all I'm not a SCI victim but my best friend just turned t6 we had a car wreck last saturday.
We were going for a trip with our boyfriends and the highway was wet and the car skidded leading us to crash with another car.. she was the worst injured I have some broken ribs and bruises and the boyfriends have similar fractures I had no idea about what had happened with her till yesterday I knew she was badly injured but they wouldn't let me visit her till she was concious so last night my phone rang and it was her, I was obviously happy when I heard her voice till...I asked "so how are you what injuries do you have or please just tell me something about you.." I wasn't expecting nor prepared to the answer she gave me she said.." I broke my back at a t6 level I'm a complete paraplegic from now on (there were a few seconds of silence till she said) doctors say I won't walk again" and she broke in tears I had no idea about what to say how to react should I go running to the hospital to see her or stay here.. cry or just think about it? I had no idea what to tell her but I just told her the unic thing I could tell her, I said " hey I'm with you through everything that's going to come ahead" I was completely honest and I won't let her alone now.. so I going to see her this friday but I don't know what to expect I'm desperated and afraid what should I do or say? please if any of you can help me or just give me advice I will be thankful forever..
take care

[nomis]

You're already doing the right thing by caring about her and planning to visit. Stay close. There's nothing better in this world than friends.
Be honest. Allow yourself to relax.
Most importantly, look her in the eyes. See her, let her see you....

[Lin]

Hi

Sorry to hear of your accident.

I agree with Nomis and suggest that you just be there for your friend. Eye contact is important and be yourself.
Allow her to express her feelings (if she wants to) let her cry,laugh, scream, talk or not talk. It's ok to show your feelings too.

There are going to be an array of emotions experienced over the next weeks , months and longer. I think it is important that as a friend / true friend you understand this and just be there for her- providing support and ear to listen will help. Talk about the things you normally talk about - share your feelings (as friends do). Try to understand that there are going to be good and bad days.

While your friend is in hospital she will probably get a lot of visitors, which is great. However in many cases a lot of people stop visiting after someone is discharged from hospital. Sadly this happens all too often - for one reason or another people drift away.

Your friend will still need your friendship and gift of time when she is at home.

[StillFingers]

I'll add only one thought to nomis's, touch, human contact, holding her hand, a hug, what ever you feel comfortable with, letting her know you are there for her, even wiping away a tear or two. Do come back to this site and bring your friend when she recovers, if she would like. There are wonderful, caring, loving people here and lots of good information. My best to you and your friend on your new journey. Jerry

[mkie]

thank you i will take the advices..now i think i should call her..

[Travelling Blackbird]

You've already got the main good advice, and it seems you're already doing the most important thing of trying to be there for your friend. A lot of people lose friends in the first year post-SCI.

Be open, be honest, listen, and be ready to speak your mind if it's called for. It'll be stressful for both of you, so make sure you also have some time to de-stress after visiting. If you want to be there for her, you'll need to have energy.

Try to be the same friend you were before the accident. Don't be "the accident friend".

All the best,
Derek.

[E-DOG]

Really simple mkie.

Just BE THERE FOR HER.

That's about all you can do for her right now. Knowing I have a friend by my side doesn't necessarily make things easy, but it makes things easier.

E

[Trinity]

Exactly what Edog says.

Nothing you can do will change the situation but by being there for her will make a helluva difference. There are too many sad stories on here of people losing friends post injury, I guess I was one of the lucky ones in that respect, my friendship group is exactly the same. My friends were there for me when I needed then and gave me space when I needed it. You need to let her know you are there for her and will support her through this. An event like this lets you know who your real friends are. Don't expect her to be the same person you knew, she is but it will take time for her to re-emerge from this dark cloud, time and patience and a listening ear is what is required. You will probably have feelings of guilt too, the same way that she will be think "why me". The key is to keep all the channels of communication open. Don't be afraid to talk about your feelings.

She has a very long road ahead of her. She not only needs you now but also in the future. You have shown your support for her by joining the site looking for information and support. That is admirable in itself.

Good luck with everything

[Stickman]

Sorry to hear about that, like everyone said just be there as much as you can, it'll mean the world to her.

[mkie]

so I'm still on the hospital while she's sleeping.. I wanna thank all of you for your advices but am I doing the right thing? better tell ya what I did
so I arrived and she was asleep and I sat by her side you know watching your best friend going through this isn't easy thats the first thing i found out.. Well she woke up with me holding her hand and all I could do or say was I told ya I'm going to be here for everything so I sat like on a side of the bed and she lied her head on my shoulder and I just asked how are you she just spitted it all out.. she said she's completly destroyed afraid and angry that the unic thing she wants to do is cry.. so remembering all of the things you people told me I held her and she cried like a baby and I wiped away her tears ok so now here's where I'm asking myself if I said the right things I said do you want to talk about it she said that it's tough just wake up and try to get up and you're not able to do so nor feel anything, that she feels like she's alone through this and that she thinks there's no hope for her..well I just said "it is tough and it will be tough not only now but you will get through it you can do this nothing has beaten you before and this won't do it and if you are feeling like giving up you know I will be there to knock back courage to you listen i know its hard to believe in but if you dont believe no one will..and you are not alone i know ive told you things before and ive failed sometimes but you can trust in me i promise you i will be here everyday after school and spend the weekend with you believe in me I wont fail you you will make it through and ill be with you through all of this and i will be there when you get out of this cause i know you will"yeah she was crying the whole time she just said thank you and hugged me i made her laugh and while i went for something to eat she fell asleep and well so now im here watching her sleeping so did i do the right thing?? i tried to be honest but sweet at the same time i give her a shoulder to cry/lean on and a listening ear please any advice will be welcome again thank y'all who advised me and will do

[StillFingers]

mkie, on Jun 12 2009, 07:02 PM, said:

so I'm still on the hospital while she's sleeping.. I wanna thank all of you for your advices but am I doing the right thing? better tell ya what I did
so I arrived and she was asleep and I sat by her side you know watching your best friend going through this isn't easy thats the first thing i found out.. Well she woke up with me holding her hand and all I could do or say was I told ya I'm going to be here for everything so I sat like on a side of the bed and she lied her head on my shoulder and I just asked how are you she just spitted it all out.. she said she's completly destroyed afraid and angry that the unic thing she wants to do is cry.. so remembering all of the things you people told me I held her and she cried like a baby and I wiped away her tears ok so now here's where I'm asking myself if I said the right things I said do you want to talk about it she said that it's tough just wake up and try to get up and you're not able to do so nor feel anything, that she feels like she's alone through this and that she thinks there's no hope for her..well I just said "it is tough and it will be tough not only now but you will get through it you can do this nothing has beaten you before and this won't do it and if you are feeling like giving up you know I will be there to knock back courage to you listen i know its hard to believe in but if you dont believe no one will..and you are not alone i know ive told you things before and ive failed sometimes but you can trust in me i promise you i will be here everyday after school and spend the weekend with you believe in me I wont fail you you will make it through and ill be with you through all of this and i will be there when you get out of this cause i know you will"yeah she was crying the whole time she just said thank you and hugged me i made her laugh and while i went for something to eat she fell asleep and well so now im here watching her sleeping so did i do the right thing?? i tried to be honest but sweet at the same time i give her a shoulder to cry/lean on and a listening ear please any advice will be welcome again thank y'all who advised me and will do

You did great Mkie. Who really knows exactly what to say. My family, a few friends and the hospital staff helped greatly. Just continue to be there for her, do give her some space as well. There are tougher times ahead and much better times as well.

We all grieve and recover differently, so give your friend and yourself time to adjust. Also, there may be times when you can not be there for her, sometimes life gets in the way, don't beat yourself up if this happens, and get some sleep also, you will need the strength.

Be well,

Jerry

[wheeliebear75]

Leave it to E-dog to cut around to the chase & say it in 10 words or less.

But you know some of the things that kept my spirits up were the things from the outside like a small tub of ice-cream from Baskin Robins, & seeing my family. (just make sure she's medically cleared for anything consumable 1st)

Wish her & the rest of you the speediest of recoveries. Your friend would be welcomed here with open arms.

[Slowlegs]

mkie, on Jun 13 2009, 02:02 AM, said:

...she just said thank you and hugged me i made her laugh and while i went for something to eat she fell asleep...

Sounds to me like you're doing it right. Just one thing, personally I wouldn't start giving personal guarantees like "I know you'll walk again" or start looking for revolutionary cures for SCI on the internet. Some paraplegics walk again as do some quads but the number that don't by far outnumber those that do and most of the "miracle cures" on the net are nothing but hype. I am not trying to be negative but I don't think you want to be the friend who promises the world then lets her down which some do.

Encourage her to get on with her life by looking after herself, doing physio, putting on makeup etc (all the things she used to do) which will help her move forward and rehabilitate herself. Encourage her to keep up with her education where she can when the doctors think she is ready because there is nothing like a good education to get us through life. It is going to get a lot harder for her at differing stages but then other times, now will be a distant memory. Still feel free to tell her she is being lazy, stubborn or silly, as you should also tell her she is smart, looking good or doing well - just like you would with anyone else.

I suppose what I am saying is support her but don't treat her with kid gloves because she will become stronger and develop coping mechanisms and new abilities with time with your support. Just be a good friend like it sounds you are.

[Travelling Blackbird]

You were there, you were a friend to her, and you comforted her: in other words, you did the right thing.

Be there when you can be there, but give yourself resting time, as this is also hard on you, and her space and time to think when she needs it.

Be encouraging and be there when she needs to cry or vent, but also be her friend: bring a favorite movie, some ice-cream or pizza or whatever you used to eat together when you watched a movie, watch it... basically, remember to bring some good times for both of you too.

Look after yourself in all of this too.

[mkie]

thanks so much for the advices! now i was wondering another thing i know she will have to struggle to do a lot of things that are a piece of cake when you are not injured so if i see her struggle with it should i just go running and do everything for her or let her have her own independency and just help her if she asks for it? i read somewhere that i might hate see her struggling so hard but there are thing that sci people cant really do no matter how much effort they do and thats when AB(yes, I just learned the AB thing) should help but the rest should be done by the injured..
thank all of you again

[Slowlegs]

mkie, on Jun 14 2009, 10:25 PM, said:

thanks so much for the advices! now i was wondering another thing i know she will have to struggle to do a lot of things that are a piece of cake when you are not injured so if i see her struggle with it should i just go running and do everything for her or let her have her own independency and just help her if she asks for it? i read somewhere that i might hate see her struggling so hard but there are thing that sci people cant really do no matter how much effort they do and thats when AB(yes, I just learned the AB thing) should help but the rest should be done by the injured..
thank all of you again

Good point, I think you should let her know you are there for and will help her when she needs it and also if she feels you are doing too much. You also don't want to let her become dependent on you for things she can do either. Once she is home again and capable you don't want to be called up at 2AM on a school night because she wants a glass of water after all. Talk to her doctor about assisting her, not doing things for her. After a while you will probably be able to tell she is slacking off. She should be able to have a relatively independent lifestyle depending on her physical recovery, outlook and attitude. If you rush in and help each time then

A: she may not push herself which isn't the best for her recovery and
B: she may get to resent the help if she can do it herself. It is a fine line though.

Just one other question, you are spending a lot of time with her but haven't mentioned her boyfriend. Just wondering if he is open to assisting too? It would also perhaps help give you a break as well. Travelling Blackbird raised a good point that you should make sure you look after yourself as well. I did find also that sometimes a visit from a person with a similar injury level who was fully recovered would help me "get over myself" too whenever I was going through a low spot (they will happen) because I could ask them questions and learn what I would possibly eventually be able to achieve in life.

[mkie]

Slowlegs, on Jun 14 2009, 10:51 PM, said:

mkie, on Jun 14 2009, 10:25 PM, said:

thanks so much for the advices! now i was wondering another thing i know she will have to struggle to do a lot of things that are a piece of cake when you are not injured so if i see her struggle with it should i just go running and do everything for her or let her have her own independency and just help her if she asks for it? i read somewhere that i might hate see her struggling so hard but there are thing that sci people cant really do no matter how much effort they do and thats when AB(yes, I just learned the AB thing) should help but the rest should be done by the injured..
thank all of you again

Good point, I think you should let her know you are there for and will help her when she needs it and also if she feels you are doing too much. You also don't want to let her become dependent on you for things she can do either. Once she is home again and capable you don't want to be called up at 2AM on a school night because she wants a glass of water after all. Talk to her doctor about assisting her, not doing things for her. After a while you will probably be able to tell she is slacking off. She should be able to have a relatively independent lifestyle depending on her physical recovery, outlook and attitude. If you rush in and help each time then

A: she may not push herself which isn't the best for her recovery and
B: she may get to resent the help if she can do it herself. It is a fine line though.

Just one other question, you are spending a lot of time with her but haven't mentioned her boyfriend. Just wondering if he is open to assisting too? It would also perhaps help give you a break as well. Travelling Blackbird raised a good point that you should make sure you look after yourself as well. I did find also that sometimes a visit from a person with a similar injury level who was fully recovered would help me "get over myself" too whenever I was going through a low spot (they will happen) because I could ask them questions and learn what I would possibly eventually be able to achieve in life.

well the boyfriend or i might call it ex... cause when she called me at first she didnt mention it but he had seen her the afternoon before she calle dme and came up with a bunch of things and they broke up...yeah i know thats awkward.. bad from the guy

[Travelling Blackbird]

mkie, on Jun 15 2009, 12:25 AM, said:

thanks so much for the advices! now i was wondering another thing i know she will have to struggle to do a lot of things that are a piece of cake when you are not injured so if i see her struggle with it should i just go running and do everything for her or let her have her own independency and just help her if she asks for it? i read somewhere that i might hate see her struggling so hard but there are thing that sci people cant really do no matter how much effort they do and thats when AB(yes, I just learned the AB thing) should help but the rest should be done by the injured..
thank all of you again

As Slowlegs says, there's a fine line between assisting and going too far with being helpful and smothering someone or enabling them to be dependent. Struggle can be good. She needs some struggle to learn how to deal with obstacles.

Slowlegs also mentions a mentor-type person. It's great for someone who's new to using a wheelchair to get in touch with someone who's more experienced.

Definitely don't go running to help. Talk to her about it at some point. See how she feels.

If she's trying to do something and she's struggling, she does need to try a bit, then to decide to ask for help. It's not a good thing to have too much help. Establish your rhythm of co-operation. Give her room to fail, and time to ask for help when she needs it.

One of my exes said this to me at one point "Listen, I want to help, but I know there are plenty of things you can yourself, so can we say now that you'll ask me if you need me, and if you don't say anything, that means you're good trying it yourself?" That was really great. We didn't waste time with him asking me every few minutes "Do you need help? I can do that, give that here", and I felt respected.

Another one of my exes did too much... "Listen, I have to go out for a couple of hours, so I already made sandwiches, they're in the fridge on a plate, and I poured you iced tea, it's in the fridge door in the tall glass. Don't try to wash the dishes. They can wait till I get back. Here's the remote, and the phone..." You get the picture. I had to sit him down again and again to say "Hey, you know what? I really love that you want to do this for me, but I need to do some things too. And if I'm cutting bread and I drop the knife, or if I'm washing dishes and I break the plate? So what. It's okay." In the end, he got it, and we could move on and be supportive of each other.

Just a few examples:
There are two steps at the front of my building, and every day, I have to wheelie down those steps when I'm going out, and get myself back up them when I'm going back in. I always appreciate it when someone walking past stops and says "Hey, do you need a hand?", and even though I usually say "No, that's okay, I've got it covered", there's the odd occasion when I'll say "That'd be great, let me show you what to do", because it's raining and the steps are slick, or because I'm having one of those days.
However, I hate it when someone just comes over quickly and grabs the chair to help me in or out, partly because it scares the shite out of me when someone just grabs my chair, and partly because it's actually dangerous because they don't know what they're doing.

I don't wash proper wine glasses. I always ask someone to do those, because I can't judge my grip well and I will break them. My flat-mates know that, because we talked about it, so they'll do them when they have a free moment.

I never want help with my shoelaces, no matter how long it's taking me to tie them up. If I get really frustrated, if I really can't do it that day, then I'll wear slip-ons. If someone were to start tying my laces for me, I'd feel really embarrassed, awkward and bad. It's just one of those things. Again, my flat-mates know that, because we talked about it.

Summary:
Talk to each other.

[mkie]

so thank ya'll think there's no one better than sci victims to advice a friend of a sci victim..so she's meant to be in rehab like in a week and a half what is she going to go through? i will be there but should i just sit there to watch?

[qbounce]

In my situation, I wasn't comfortable with friends/ family in on my therapy sessions, mainly because I was relearning how to do the simplest and most menial of tasks all over again from the ground up and I felt self conscious about how I looked doing it. From sitting up, rolling over, getting dressed, whatever.

I really needed that time to focus and not worry about what others were thinking about how different I looked, moved, and the new ways in which I had to perform those tasks to complete them.

For these reasons, I made sure to schedule my visits outside of therapy, usually around dinner time and on weekends. Otherwise, I loved the visits from everyone.

But that's just me.

[StillFingers]

qbounce, on Jun 20 2009, 05:03 PM, said:

In my situation, I wasn't comfortable with friends/ family in on my therapy sessions, mainly because I was relearning how to do the simplest and most menial of tasks all over again from the ground up and I felt self conscious about how I looked doing it. From sitting up, rolling over, getting dressed, whatever.

I really needed that time to focus and not worry about what others were thinking about how different I looked, moved, and the new ways in which I had to perform those tasks to complete them.

For these reasons, I made sure to schedule my visits outside of therapy, usually around dinner time and on weekends. Otherwise, I loved the visits from everyone.

But that's just me.

Perfectly said Q, this is def a key, alone time, time to discover what still works, what you can and can not do...family/friends often protect/help to much. Rehab is the easy bit, life after is more complicated, learn/try everything you can.

[gordonr]

mkie, on Jun 20 2009, 11:07 PM, said:

so thank ya'll think there's no one better than sci victims to advice a friend of a sci victim..so she's meant to be in rehab like in a week and a half what is she going to go through? i will be there but should i just sit there to watch?

Dear Girl,

You are doing wonderfully. This thread is wonderful. You are actually listenning, and believe me, you are listenning to some of the most awsome sci people around.

There is nothing at all for me to contradict. But I want to ask you to slow down. This whole thing is moving too fast. Your friend was only hurt ten days ago, and now she will be in rehab in a week. That is not even three weeks all together! It takes time for her to realize, for you to realize, for the dust to settle, and here the world is just hustling you along to some quick conclusion and discharge.

Yes you can mentally understand what is happenning. And it is true that the deep decisions you make now will be crucial later, but the conclusions that you make now are conclusions that you are jumping to. It is like staying up all night reading a book to get to the ending, or cramming for an exam.

Relax and try to get out of emergency mode. This is a marathon not a sprint.

But there are one or two things you should talk about with your friend right away. The most important is pressure sores. This is a long post and I will not give the lecture. But please, ask the others what pressure sores are, what they can do, and how to prevent them. It is an unfortunate fact that many people get severe sores before they even get out of the hospital. It is serious. And it is entirely avoidable.

My Love to you and your friend,

Gordon

[Travelling Blackbird]

mkie, on Jun 21 2009, 01:07 AM, said:

so thank ya'll think there's no one better than sci victims to advice a friend of a sci victim..so she's meant to be in rehab like in a week and a half what is she going to go through? i will be there but should i just sit there to watch?

I would also advise letting her be in rehab on her own unless she specifically asks you to be there with her, and even then, I'd think twice. She'll need some space to really focus on what the physiotherapists and occupational therapists are telling her, and some time to get her head around the information later.

If you want to be around just in case, you could go get coffee, and read a book while she's in therapy. You could tell her to call if she needs you there immediately afterward, and if not, go back to visit later. She might need alone time after therapy as well.

Gordon's right too: slow down a little. You're a wonderful friend for devoting so much time to her recovery (and I know I'm a broken record) but look after yourself as well.

[wheeliebear75]

I'd say on all counts just ask; ask her if she needs help, ask her how she would feel about you being there for physio (she may find comfort in a friend around or she may not want anyone around).

Yes false hope is just a farther drop back down to reality.

What a head! "What goes around comes around".

Everyone has made very excellent points so there really isn't a lot more to say.

Wish her all the best.

[Scribbler]

Can I ask you to write more in your profile, you don't even put your location?

You write very well and already seem very Knowledgeable about SCI.

[Slowlegs]

Just one thing. Nobody has picked it up yet but perhaps the "SCI victim" label may not always be suitable. To call someone a "victim" sort of implies helplessness. Yes, we are mostly all accident victims but a lot of people on here have overcome their SCI's and are living pretty active and fulfilling lives. It may sound pedantic but it is to me more about what someone can't do than what they can. I don't know, what do others think?

Please don't take it as a criticism as I think you are a great friend - it's just an observation and my opinion.

[StillFingers]

Hmmm, interesting catch Slowlegs. Negativeness can be found in many words, and their impact can make life more challenging; given continued use, tone or context in which they are delivered. As the years pass those categorizations; cripple, gimp, four eyes, retard, nerd, victim. etc., tend to lessen their bite.

But your correct, in the early days, months, even years, encouragement should take the lead, allowing us to see the positive in being alive. Later, after surgery and rehab, life/people throw enough at us, the trick is to let it roll off your back, not let it define you.

Edited by StillFingers, 21 June 2009 - 04:02 PM.

[mkie]

Scribbler, on Jun 21 2009, 11:10 AM, said:

Can I ask you to write more in your profile, you don't even put your location?

You write very well and already seem very Knowledgeable about SCI.

yeah sure I will when I get the chance...
well hehe I've been reading lots of things about it all I could found on the web so yeah I guess that helped

[mkie]

soooo as I think you know alot about it cause you do.. i talked with the doctors and well then she'll be on hospital for another 2 weeks but took me about 2 hours to convince them about it thank ya'll