Wednesday, May 8, 2013
I see a cure as further than I ever imagined…..
Just sounding off on this....I used to think that a "cure" for SCI was just around the corner, especially after Christopher Reeve was injured and that Super bowl commercial came out. Now that I've been dealing with a mild cord injury and an odd one at that, I never would have understood (still don't really, it seems too odd) that spinal cord injuries came in more than one basic type. I don't see a "cure" as really coming any time soon. There are so many variables. I have horrific burning nerve pain, I can't process sensory information worth a darn, my motor coordination is good most of the time but things don't respond quite right....
Now imagine that a person with the SCI has zero function, zero sensation and has been dealing with that for let's say 2 years also. They still remember walking, moving, going to the bathroom and long for it more than anything. That person gets "the cure" but they wake up to nerve pain burning off the charts, nothing responds the way they remember it or expect it, they don't always need to cath but don't understand that they need to time bathroom functions or find other methods to empty.
How can that be a cure for them when it plunges them into a new form of nightmare oddness. In my sci groups people say they'd do anything to be "cured" to "walk again", "go to the bathroom again”, but when I ask them if they would pass it to their children...they clam up. When I ask if the "cure" left them nearing insanity from the sensory overload and hypersensitivity...they also clam up.
I think people are mistaken when they think a “cure” will mean a return to normal. I no longer see that as happening. I see that perhaps the most people can expect is some return of feeling, maybe some muscle movement, but how long will it take to build those atrophied muscles back up? Will they get enough messages to the muscles to build them up or will it leave people in a greater state of disability than before, because of too much information and no way to process it? What if a person is married, has kids, a job and a full life by most definitions…then all that goes away because the cure ruins the peace they had. I can see that happening in some cases. There are so many types of paralysis and incomplete paralysis, things I never considered until I met more people and they met me.
What would a cure even be considered? Walking? Feeling? Going to the bathroom? Etc….(wink wink). Some people even have full sensory ability but zero motor function…what if the cure left them with no feeling but the ability to walk, but in the process they lost (wink wink) So may what if’s!
How long will it take to figure this out? I am aware there have been many strides with stem cells, I know there are other trials going on. I can’t help but wonder what this will mean for so many people. It’s exciting and sobering.