A lot has changed since I began my crip adventure in 1993. One of the biggest: The drive to get as much return back as possible (when you have a spinal cord injury). Now people will support you (instead of thinking you’re crazy). I went to rehab for 3 months, and then my insurance sent me packin’ (my family was not one of those families who could afford sending me to an expensive rehab center).
There was talk of me going to Craig hospital in Denver (the renowned SCI rehab center), but after we raised an unbelievable $10,000 from my benefit (that was big money for the day), the money had to go to more important things, like making my parent’s home wheelchair accessible and getting a van. Real life stuff, not pipe dreams.
Fast forward to 2012, and it’s a completely different scene for newbies. There’s talk of cures, of stem cell treatments, of “Hey, you’ll be walking again in 5-10 years. No, maybe 15.” And you gotta keep your body in tip-top shape. There’s FES bikes to get your legs moving, and thanks to Christopher Reeve, there are locomats (the walking harness system) all over the US. Now, when you’re hurt, “moving on” and accepting your body “as is” doesn’t have to be an option anymore.
Or should it still be something we do? When an injury occurs, one of the biggest things that happens (that’s not talked about as much) is how our injuries also affect our family. We have a responsibility to think about them too. Imagine this: If while you’re remaining in outpatient rehab full-time, not working on learning independent living skills or returning to real life, your mom has to be your carer. How long do you think it’s ok to continue (even if she says she doesn’t mind)? At what point does staying in rehab become selfish?
A lot of newbies struggle with this. They desperately want to get as much return back as they can, and they’ll even go into more intense outpatient programs, like Project Walk, where they’ll move out-of-state to work as hard daily to gain as much function as possible (and putting their old life, school and careers, on hold). Many will do this for 2 years.
What I’m asking is simple: If we lived in a perfect world, and had no financial limitations, at what point do you think isn’t time to retire the rehab mindset (but still working out), and to focus INSTEAD on returning to “normal life,” but now…as a chair-user?
What say you?