11 replies to this topic

[gsp23]

Just curiuos how common it is that other people have unrealistic expectations. For example, it seemed when I got out of the hospital I heard a lot that I didnt need my own chair because I wouldnt be in one forever and why not just deal with a rental chair in the time being. Then I was told that I shouldnt play sled hockey because people were sure I would be able to skate and play AB hockey soon. Then I was told that I dont need to worry about getting a chair or other apparatus to get into a field because I will be walking in no time and can hunt like an AB then. Now my latest is that I dont need to get a hand cycle because I will be riding a bike in no time. Ok when I use a wheelchair to get around and I am comming up on 10months I really dont see me riding a bike. Sure I have hopes that things will get better but I am also realistic in that I need to get by in my life instead of waiting for years to see if things will get better or not. My grandmother told me this weekend that she thinks I will be back to normal this time next year! My PT even seems to have some dilusions when I tell her that I was looking to start playing sled hockey this paster winter she said not to bother because I would be back to normal, then after the season was over she told me not to get too involved because I would be back to normal. Now when I told her there is summer session she said that she thought it was great for me as I really enjoyed it and she thought it was a great sport for me to be involved in. My docs and my boyfriend are the only ones who seem to be realistic with me.

And then in addition to that is dealing with people including PT who when I work my butt off and I just cant do any more and am ready to collapse tell me that I can keep going and I have to keep working just a bit beyond me being tired! I mean WTF! I am aready beyond that when I say something abuot being wiped out! Oh you mean that if I just work I'll get better? Why didnt I think of that!!! Sometimes I dont think that other people get the fact that every day things are work even now.

Anyways, being just 2 months shy of my anniversary and still dealing with these what I call "unrealistic expectations" thinking this may be more common than I first realized.

[itsjustme]

I wouldn't give up anything waiting on what might or might not happen. Go for everything that you want to go for. Best case scenerio-you end up with some equipment you can pass along to someone else when you are back to normal. Worse case scenerio-you are enjoying life and living every day to the fullest doing things that you enjoy regardless of the outcome down the road.

[gsp23]

I completly agree. I at first felt like I had to justify when I didnt get the support from others telling me that yeah it sounded great I was feeling discouraged but I have since decided forget them I am going to do what I want. Its frustrating dealing with people though that seem to think that I am going to get back to normal or lets just wait and see. I have tried to explain that I am not going to let life pass me by while I keep waiting on things and wish I would have come to that realization sooner cause I passed up on a great deal for a new basketball chair for $200! I get a lot of remarks that I shouldnt "give up" and keep trying to get back what I can and dont get me wrong I am working as hard as I can but... well I am sure everyone here can understand the importance of getting on with life regardless of how or what that means now from a chair. These people only seem to make it harder sometimes IMHO. Acting like I enjoy being in a chair so much that I just decided to stay in one cause gee its so much fun!

[Survivor35]

People like this frustrate me, I totally understand where you are coming from... I am a complete injury, I severed my cord.... hope of a major return? its low. But its like this: 50 percent acceptance, 50 percent hope. I Accept what I have. I have adapted to what I have. I have what I have, and that is all I am guaranteed. Anything more at this point would be a gift from God, and totally amazing, to me and my docs.

You just learn that while, yes, life is different, and some days will suck more than others, its still life. People that act like its a temp thing, and that working as hard as I have to adapt and overcome is "rolling over and giving up" piss me off, excuse my language. Its the hardest thing I've ever done in my life, and give up is not what I've done. I've accepted. And its harder than most will ever have to come to grips with in their life.

So, my opinion? In not so ladylike terms, screw 'em. Enjoy every minute of it, I think we've all learned that ain't nothing guaranteed but what we have at this very moment.

[bdmpastx]

I hate hearing this from the newly injured. It is a shame. So many choose to waste money as a result thinking that they are going to walk again. I think that we shouldn't sit and wait around for the cure. Let it come to us. In the mean time, go out and live life to the fullest that you can. Go play sled hockey, go ride a handcycle, hell look at me and some others. We ride motorcycles, ATVs, you name it. I am not going to sit here and wait. Life is way too short to do that.

[azx43]

I had a head injury about a decade ago and am right on the "edge", just like you. I use a wheelchair everyday and it is complete and total freedom for me; I can also walk with assistance. I deal with the "unrealistic expectations" thing a lot, especially right after I was injured. It has been a long road for me, but not an entirely bad one! I completely agree w/ everything that has been said- you have to move beyond hope by acting. Of course, I am hopeful about myswelf; I may walk again but I may not as well. Life is good either way! If I had beleived what others said and just waited around to "get better" I'd still be on the sidelines somewhere!
Go girl, do what you want to and enjoy the heck out of it!

[Angela250153]

gsp23 when I read your post I felt like I was reading about myself. I had an operation last July and was then told I would be walking normally again within a year, but a few months ago that was revised to whatever it gets to after 2 years will be as good as it gets.

Meantime at work I had people ask me when I will get out of that wheelchair. Well I am fortunate to work in place that is very wheelchair friendly and also has a gym I can use for free and which I go to 3 times a week. The other days I just try a walk on crutches when I can't sit anymore cause my backside is aching. So it's not like I am sitting on my butt all day and wait for things to happen, but still as long as my balance is still too bad and my walking too slow I have to use the chair to get to the loo before I wet myself because I still can't hold it for long. Also the first few minutes of walking are very painful. People just don't seem to appreaciate these things.

10 months on I have learned to drive with handcontrols and just do what I want to do and to hell with what others think I should be doing. BTW I live on my own and don't have anyone to help me with things, so I have to just keep going.

[Andrew Meddings]

it is quiet common for the relativies & friends to find it harder to accept spinal injury as normal than the person involved. in my case my injury is complete so it wouldnt matter what i did it wont improve but people would talk about a cure. i'm not holding my breath. if i did have any moovement i would be working it hard but not let it interfere with my day to day life. you probably need to be a bit more assertive with the people around you & tell them what you are going to do including doctors etc. get yourself some good equipment & start doing what you want to do
good luck

[essexscipilot]

Quote

I need to get by in my life instead of waiting for years to see if things will get better or not.

I think you answered your own question about needing a chair etc

[azx43]

I totally, totally, TOTALLY agree with everything that has been said. What makes me most angry is when people (like people I'm related to) will not even consider using a wheelchair themselves when they have trouble getting around. To them, a wheelchair is the next-to-last-step. And then there I am, the one who uses a chair everyday. They assume that using a wheelchair means that you are on the road to dying, and I find that very, very offending, so much so that I actually have gotten in arguements.
Another assumption that strangers often have that makes my blood boil is to assume that my wheelchair is huge pain to me. They say things like .". . . well if you weren't in that darn chair liFe would be better wouldn't it?" and expect me to agree with them! They soooo have no idea! I use my wheelchair to be free; it's not "a prison" at all. I do what I want when I want, I am gong for my Master's degree, have lived in 3 different states over the past 2 years, am active socially, just got hired for the career of my dreams, and it is ALL because "that darn wheelchair" allows me true freedom of mobility.
Survivor 35 couldn't have said it better, giving up is not what she or alot of folks on this website has done. Accepting a disability is certainly a lot harder than what many people will do in their lifetimes- and they call people with disabilities WEAK?! HA!!
My advice is to what Survivor 35 said, screw 'em. Don't waste your time with people like that.

[ParaforGod]

I think lots of times friends or relatives are in such denial and they think if they push enough we can do anything but this just isn't the case sometimes. Im a T4 complete I am also a amputee of my right leg. When some people see me they ask why I don't get a prosthesis they don't realize Im paralysed. I agree with all the others do as much as you can and when you want to. Keep going God gave you your life enjoy it.

[wheeliebear75]

I hear you loud and clear. Both with the "professionals" telling you 1 thing and then going back no it.....and family. I think for those of us who have some function it's hard for others to get/understand just how hard you may be trying. If you complain about every ach and pain PT gives you you're a wimp, but when you push they then try to shove....go fig. Anyway the way I see it you can sit at home and wait for that miracle (I do hope it comes) or you can go have as much fun and be as active as possible in the mean time. It sounds like your injury may not have been that long ago....and maybe your family is still holding their breath. Make fun of life.