I wanted to write this post after being prompted by a comment made by wavewolf on the psychological affects of SCI. Focus is very much on physical rehab with a much less attention on the mental and emotional state.
Even though my injury was early 2011, i spent 3 months in my spinal unit in 2012. I had one counselling session, one on my initial admittance to the unit and another midway throughout. This is quite inadequate.
I have met some people with SCI, via the forum or rehab that really do struggle to re build a new life. Their life becomes a 'virtual' world on the internet and they withdraw socially away from their very close family group.
It would be amazing if there were post SCI life coaches. Someone who could motivate and encourage/direct individuals to get back into society and find their way and role in life. They could work as part of a multi disciplinary care team...in my opinion this is just as important as funding for cure research.
Cure research, at this point, holds potentials which we need but life coaches can change the lives of individuals with SCI now.
What a great idea! People who have adjusted well to SCI could also have a chance to share that knowledge if they could be tapped (hey, paid!) to come alongside newly injured folks. Just finding a forum like this can be a life saver. Learning how to cope with B&B issues is one area that I really felt was lacking in my rehab, both how to manage physically as well as deal with the social/emotional baggage of this. Especially for younger folks new to SCI, the impact of life change is critical to address.
Exactly wavewolf,i would love to mentor someone one to one but to work on a professional basis would be great. Having access to employers who are willing to co operate in a scheme to encourage individuals back to work would be amazing.
Training new skills and having access to study, social groups. I am hoping to one day set up a 'drop in center' for adults, children are mainly accommodated for but there are many people with disabilities who are restricted.
It's a very good point Lαrα & wavewolf. Life ain't easy for most of us while we're waiting for a cure. Sure we're hurt physically but mentally we're just as hurt because it's not easy to accept the fact that we can no longer do what we did. In the summer I'm planning to volunteer at my rehab center to talk to the newly injured people and to tell them about how's it's not all that bad. Just because we're injured doesn't mean we can't have fun and enjoy what we do have!
DJ, I think you will benefit as well as those SCI newbies when you volunteer! I did the same, and it is good to know that your experience can help another cope better. Seeing you functioning well is about as encouraging as it gets, I was told.
It's a very good point Lαrα & wavewolf. Life ain't easy for most of us while we're waiting for a cure. Sure we're hurt physically but mentally we're just as hurt because it's not easy to accept the fact that we can no longer do what we did. In the summer I'm planning to volunteer at my rehab center to talk to the newly injured people and to tell them about how's it's not all that bad. Just because we're injured doesn't mean we can't have fun and enjoy what we do have!
This is such a great thing to do DJ. When i was in rehab, i spent every day for a couple of hours in the high dependency unit, many were still ventilated, wearing those metal Halos or still flat on their backs.
I would go chatting to every one of them and the question i was asked most was 'how long ago was your injury' and the most often comment was 'i hope i get to be like you' . These guys need positive role models at this time. Meeting someone who lives with SCI and is still enjoying life with a purpose is the best thing for them. The mental and emotional benefits are vast and this is what keeps people striving at working hard with their recovery
It's true wavewolf! When I met other quads with the same injury as me doing so well it gave me some hope that maybe I could be we're they're at. It did also seem like I'd never get to where they were at because of how weak I was but it still gave me hope and I worked hard and here I am now!
Yeah Lαrα that's great! I remember seeing walking quads and hoping I could be like them and even though it hasn't happened, I'm still thankful for what I do have. Of course I get my down days once in a while but who doesn't?!
Post by kilg0retr0ut on Mar 13, 2015 11:12:06 GMT -8
That's the sad part about our kind of injury. Not like dealing with the whole new challenge of being crippled isn't enough, then your put in the Medical/Insurance system, then you need an lawyer. Lawsuits, I know some here are dealing with this now. How many years do they keep you stressed to the max, playing games you don't want to play. I look to the day I don't have these kind of hassles, nope it's not coming, so I'll adapt and consider this part of my new life and drive on.