Hi all,
I just joined today. I have been sitting by my brother's side since November 1st after his accident occurred. He was on his dirt bike, did a jump and the way he landed on the bumper of the bike compressed his spine in such a way it literally blew up T12. Part of T12 was compressing his spinal cord in such a way that it was hard to tell, even by MRI, if it was severed or only compressed. From the moment he hit the only thought was "can I move my body?" He wasn't knocked out nor could he move his lower half.
I am a newly graduated RN and thankfully (in this case) do not have a job so I have been able to be by his side everyday usually 10-12 hours a day. I haven't cried much... feel like I have to be strong for him. Although as the days pass (he is now in Rehab) I just want the best for him and want him to continue to live the most independent life possible. He is 21 years old. He hasn't talked about anything really. A few days ago he finally let some tears shed since he is scared that he can't feel his legs. For a 6'3" firefighter this is something really hard to grasp. I have made a blog of this journey. http://jr-journey.blogspot.com
Please check it out if you want to know more about this story. I love being here with him and I know he really appreciates it. But there are days when I feel like I get really frustrated and want to scream and yell at him to bite the bullet and just do it. Of course I don't do that but I also get mad at myself for feeling that way towards him. Especially when I am sure he feels like he has no control of his life right now. Any advise? Any words of wisdom to tell him? I feel like he is bottling up so much right now and he is going to become a volcano one day to let everything out. Is that healthy?
Thank you for reading this! God bless! Take care!
Full Version: How Do I Cope - Sister Of Paraplegic?
Quadriplegic & Paraplegic Spinal Cord Injuries > Disabled Living & Spinal Cord Injuries > General Spinal Cord Injuries Discussions > New Acute Spinal Cord Injuries Q & A
Welcome Reno, sorry to learn about your brothers misfortune.
Please shed some light for me, what do you mean: ''and want to scream and yell at him to bite the bullet and just do it'' - I'm not sure what it is you want him to do? is it because he doesn't cry and scream - and you want him to realize what has happened?
I can understand your frustration, it must be hard I'm sure - but it sounds as if you're doing everything possible.
- Tell him to maintain hope, and that the harder he works in rehab - the better. - he can learn to have control over his own life and live without being nursed on a daily basis - this is something he needs to understand.
All the best!
-t-
Please shed some light for me, what do you mean: ''and want to scream and yell at him to bite the bullet and just do it'' - I'm not sure what it is you want him to do? is it because he doesn't cry and scream - and you want him to realize what has happened?
I can understand your frustration, it must be hard I'm sure - but it sounds as if you're doing everything possible.
- Tell him to maintain hope, and that the harder he works in rehab - the better. - he can learn to have control over his own life and live without being nursed on a daily basis - this is something he needs to understand.
All the best!
-t-
Hi Reno
Sorry about your brother. He's lucky to have your support. Sounds to me like you're doing the right thing by just being there. This is a long journey and although you may learn a few tricks along the way from the old timers, it's also a very personal journey for the person with SCI and those close friends / family / lovers around them. Each person has to find their own way through it, and not every day will be happy.
Knowing that you are normal and that other people act / feel as you or your brother do will help you. Learning patience will help you. If you read through the many threads on this subject you'll see that there are times for patience, kindness and understanding and then there are other times for tough love where you have to tell the SCI person to pick themselves up off their sorry
and stop feeling sorry for themselves.
We none of us get it right all of the time and it isn't always an easy learning curve. But when you read on through other posts, you will see that la vita è bella and that an accident can bring out depths and reserves that we didn't realise we possessed.
When I was newly injured, I didn't even want to talk to someone in a wheelchair who was saying "there's life after injury" (and that's pretty normal too). Take one day at a time, concentrate on the immediate issues. As the days add up, you learn more, cope more, sometimes cry more. Sometimes you think you're over the worst, and then sometimes it hits you, and then sometimes the clouds break and things just work out.
Having dependable support is the thing that helps get people through.
Sorry about your brother. He's lucky to have your support. Sounds to me like you're doing the right thing by just being there. This is a long journey and although you may learn a few tricks along the way from the old timers, it's also a very personal journey for the person with SCI and those close friends / family / lovers around them. Each person has to find their own way through it, and not every day will be happy.
Knowing that you are normal and that other people act / feel as you or your brother do will help you. Learning patience will help you. If you read through the many threads on this subject you'll see that there are times for patience, kindness and understanding and then there are other times for tough love where you have to tell the SCI person to pick themselves up off their sorry
and stop feeling sorry for themselves.We none of us get it right all of the time and it isn't always an easy learning curve. But when you read on through other posts, you will see that la vita è bella and that an accident can bring out depths and reserves that we didn't realise we possessed.
When I was newly injured, I didn't even want to talk to someone in a wheelchair who was saying "there's life after injury" (and that's pretty normal too). Take one day at a time, concentrate on the immediate issues. As the days add up, you learn more, cope more, sometimes cry more. Sometimes you think you're over the worst, and then sometimes it hits you, and then sometimes the clouds break and things just work out.
Having dependable support is the thing that helps get people through.
Reno,
The first of november is like not even three weeks ago.
The idea that this guy can "just get on with it" is way too extreme. Actually, he will probably act like he is just getting on with it, but this is an impossibility.
In the first stage, I believe you just have to take some distance. I was much more badly injured than you describe, apart from the sci, so I spent about three months recovering before I started rehab. Part of that time I was really sick, but for the latter part, I was really just like a seal on the beach, reading Les Miserables (all six volumes in that particular edition). I did not do any particularly heavy thinking. I did not try to figure out what living without walking would be. I just had the gratitude to be alive, and a basic faith that anything anybody else could do, I could do it too. Hence, given that there are other people out there living with sci I would too. But that was as far as I thought it out. I left the details for later. For the time being, I had people spoon feeding me, wiping my bum, changing the sheets, and what the hell, turn the page for me please. It was like club med with traction. And angels flying around called nurses. I think that in between period with no pressure really helped me.
So it is too bad that all of this is going so fast for your brother. He needs time, I believe, to just breath, and appreciate the fact that he is still alive.
If he can just fixate on that miraculous fact that he IS alive, he will slowly figure out how he is going to live that life.
I'm not sure how long most people think it takes to adjust to sci, but I would guess that five years is about right.
I don't want to rain on the parade of all those six-month-wonder-kids out there, but I was a six month wonder kid too, and I only started to really get my life back together after about five years +.
So that's the message. Relax. Let time heal. This is a marathon, not a sprint.
Best Regards,
Gordon
P.S. look after the physical part. Read about pressure sores and make sure he doesn't get them now while he is too dumb to know what they can turn into. When I say "dumb", please realize that there is something that could be called "sci-smart" ( like "street-smart") and until you get it, you are "sci-dumb", which is dangerous. It is best to smarten up as quickly as possible.
So get him on the laptop. Get him studying up right here.
The first of november is like not even three weeks ago.
The idea that this guy can "just get on with it" is way too extreme. Actually, he will probably act like he is just getting on with it, but this is an impossibility.
In the first stage, I believe you just have to take some distance. I was much more badly injured than you describe, apart from the sci, so I spent about three months recovering before I started rehab. Part of that time I was really sick, but for the latter part, I was really just like a seal on the beach, reading Les Miserables (all six volumes in that particular edition). I did not do any particularly heavy thinking. I did not try to figure out what living without walking would be. I just had the gratitude to be alive, and a basic faith that anything anybody else could do, I could do it too. Hence, given that there are other people out there living with sci I would too. But that was as far as I thought it out. I left the details for later. For the time being, I had people spoon feeding me, wiping my bum, changing the sheets, and what the hell, turn the page for me please. It was like club med with traction. And angels flying around called nurses. I think that in between period with no pressure really helped me.
So it is too bad that all of this is going so fast for your brother. He needs time, I believe, to just breath, and appreciate the fact that he is still alive.
If he can just fixate on that miraculous fact that he IS alive, he will slowly figure out how he is going to live that life.
I'm not sure how long most people think it takes to adjust to sci, but I would guess that five years is about right.
I don't want to rain on the parade of all those six-month-wonder-kids out there, but I was a six month wonder kid too, and I only started to really get my life back together after about five years +.
So that's the message. Relax. Let time heal. This is a marathon, not a sprint.
Best Regards,
Gordon
P.S. look after the physical part. Read about pressure sores and make sure he doesn't get them now while he is too dumb to know what they can turn into. When I say "dumb", please realize that there is something that could be called "sci-smart" ( like "street-smart") and until you get it, you are "sci-dumb", which is dangerous. It is best to smarten up as quickly as possible.
So get him on the laptop. Get him studying up right here.
I read day 17 of your brother's blog. Did they check for UTI? If he does hav a UTI it could make him get sick to his stomach. Just a thought/solution for the stomach upset.
Hello everyone,
Quite a bit to comment on this...Reno, I'm 32 and had my injury two years ago. Mine was thoracic as well. There are a few things I would advise...
My extended family, including my brother, live in other states. My wife and I went through this very much on our own. Not having people around made the recovery much more difficult. You are doing a good thing by staying close.
I am finding out right now that the recovery process is a long one. I think someone mentioned 5 years and 6-month wonder kids...I was a 6-month wonder kid and I worked my ass off to walk again and now I can do a lot of things well. However, I'm finding that it is rare that anyone gets 100% back. And at two years, I think I am now learning why it will take 5 years. I think there is something to living with it long enough to accept it.
Your brother will likely be completely exhausted for a while. I found that the most amazing thing in the rehab process. I would rehab for 30 minutes and sleep for 10 hours. For some reason the stamina goes, and takes a while to get back.
As far as wanting to yell at him, etc...there is some validity there, but there is also a time for rehab and a time to treat him like a normal human being. I've often read others say that it is important to remember that your brother is still the same person...so treat him as such. When he rehabs, push him in a positive direction (and make sure you get in a good rehab facility!). When you're hanging out, it should be no different than it was before the accident. Just be his brother, dude. And I think it's okay to ask questions. I wish someone would have engaged me on what I was going through. "How's the back?" gets old after a while!
I'm also a nurse. A very good one. What you are doing for your brother is what brothers should do and nurses should do. Hang in there. It's a long, tough ride but I hope you'll both be better for it.
The people here are amazing. As my recovery moves on, I'm understanding that I would feel tremendously alone without them. Let him know we're around for him.
Quite a bit to comment on this...Reno, I'm 32 and had my injury two years ago. Mine was thoracic as well. There are a few things I would advise...
My extended family, including my brother, live in other states. My wife and I went through this very much on our own. Not having people around made the recovery much more difficult. You are doing a good thing by staying close.
I am finding out right now that the recovery process is a long one. I think someone mentioned 5 years and 6-month wonder kids...I was a 6-month wonder kid and I worked my ass off to walk again and now I can do a lot of things well. However, I'm finding that it is rare that anyone gets 100% back. And at two years, I think I am now learning why it will take 5 years. I think there is something to living with it long enough to accept it.
Your brother will likely be completely exhausted for a while. I found that the most amazing thing in the rehab process. I would rehab for 30 minutes and sleep for 10 hours. For some reason the stamina goes, and takes a while to get back.
As far as wanting to yell at him, etc...there is some validity there, but there is also a time for rehab and a time to treat him like a normal human being. I've often read others say that it is important to remember that your brother is still the same person...so treat him as such. When he rehabs, push him in a positive direction (and make sure you get in a good rehab facility!). When you're hanging out, it should be no different than it was before the accident. Just be his brother, dude. And I think it's okay to ask questions. I wish someone would have engaged me on what I was going through. "How's the back?" gets old after a while!
I'm also a nurse. A very good one. What you are doing for your brother is what brothers should do and nurses should do. Hang in there. It's a long, tough ride but I hope you'll both be better for it.
The people here are amazing. As my recovery moves on, I'm understanding that I would feel tremendously alone without them. Let him know we're around for him.
QUOTE (reno775 @ Nov 18 2009, 05:00 PM) 
...the way he landed on the bumper of the bike compressed his spine in such a way it literally blew up T12. Part of T12 was compressing his spinal cord in such a way that it was hard to tell, even by MRI, if it was severed or only compressed.
That's called a burst fracture and there are several of us here who have them at or near the T12.
I don't think people realize how much the drugs we are on, even in rehab, effect our emotions. That can really mess you up until you get off of them (and that may take a few months). Plus, we all go through a morning process. Just give him time. The best thing you can do for him is to be there.
QUOTE (Kwag_Myers @ Nov 19 2009, 10:25 AM)
I don't think people realize how much the drugs we are on, even in rehab, effect our emotions. That can really mess you up until you get off of them (and that may take a few months).
What Kwag Myers said about the drugs is EXACTLY how I felt while in the hospital. I actually felt like everything was so surreal as if in a dream, where I was just doing what everyone told me to do, but nothing was really clicking regarding my new permanent status. I did my rehab in a fog, and I even felt far removed from my actual surroundings, all attributed later to Vicodin. Everyone thought I was so brave and strong, when in fact, I was completely zombified by pain medication.
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