Blurring the Lines

You can't, you can't, you can't

You can't

 Or can  you? Will you? Do you want to?

 But really, you need to, it will change your life!

 These are the words that have been playing in my head ever since I can remember, but especially over these last few weeks, as I have dealt with physical issues that come with the “aging” of CP.

 I always knew that it was a thing, but  it wasn't until the last year or so that I started to learn about the complexity that is the medical industrial complex.

 It's a parent's worst nightmare learning that their kid  is “defective”, will never be “normal”, will never do the things that they do. So naturally  there is a whole money-sucking industry based on  giving the child the best “quality-of-life,” making them the most “functional” so that their lives will be “better.” God, I hate those words.

 While I do not regret the choices that were made in my own best interest when I was younger, it does strike me that as said children grow older and become independent (wow, cripples  can do that?? I had no idea!),  that these choices, treatments, braces, needles, doctors, often begin to conflict with the identity  that they begin to develop for themselves as a human being. I know that this is certainly true in my case, as well as for many people I have encountered over time. They slowly, very painfully begin to accept themselves and become empowered in the way that they are. It is not always true, nor is it always easy. It is a process.

And then, there is the  “real world,”  the one that seems to revolve around two things, money (we all know what that is, you know, the stuff that grows on trees) and ableism  (the idea  that being able bodied and physically capable is the normal way of being, and that anything else is, well, wrong)

 Some people in this real world do not realize that we are still here. We will continue to be here, trying to live with the challenges and conditions that we have been given. They are not magically going to go away after some  evaluation, or writing on a piece of paper. Or are they?

 See, that's where this other thing called  money comes in. Some people realized that they could  make a lot of money if they tried to help make us better, to make it all go away.

 You ask, now why is she rambling about this for  three pages? Oh honey, that was just the background…

 My point…

So, for a person like me, it becomes all about management, of risks, benefits, spoons and many other things.

 “ You can't walk, you're not functional.”
 “You need to exercise and weight bare  or your muscles will atrophy. We can't help you here.”
 “ You need to lose weight.”
 “You should stop doing that, it's too much for your knees.”

  All   great advice, but  don't you notice a Catch-22 here? If I sit on  my ass and  do nothing, I will become older and stiffer, and that it is not a specialized skill, which therapy can help with. If I do, it's always something that I shouldn't be doing. In today's world, you can't do something just because you want to, there has to be continual progress, or it's not good enough. Although I want this progress for myself, I realize than it's impractical, it's hard, and sometimes, it sucks, but walking is probably the most rigorous workout in all my muscles  that I get, just trying to cross the room. Yes, this is my own internalized ableism and spite talking, but sometimes it feels damn good to say I can.

 But alas, it's not “progress”…

So this is where I stand today, but wait, there's more!

 “I really think you should get the pump. It will make your life so much easier if you can, you know, move your legs.”

The intrathecal Baclofen pump is something  that my family has been made aware of for at least 10 years. Basically, it pumps small doses of an anti-spasticity medicine continuously into your spinal column through an implanted device, supposedly making you more limber. I took the oral medicine many years ago and it  gave me what I affectionately like to call a “Baclofen hangover,” basically there is so much medicine in your bloodstream that it turns your brain into a zombie. This new option would seek to alleviate those symptoms. Will it make my life “better”? I don't know. All I know is that I dread the day when I can't  bend anymore to move myself in my chair, or stand up from bed. However, I also dread the day that the medicine takes away the only strength that I know and leaves me unable to do these things, like a lump  in a wheelchair. Yes, I know that the final results probably won't be this drastic, but…

 Why is she getting this medicine willingly injected into her spine in large quantities?, you ask.  She's just fine the way she is, why doesn't she just accept that?

 Sometimes, I wonder that myself. For now, the answer is to see how it will affect me. The doctors say that during this test round, I should basically be prepared to lose all the muscle function that I know. That thought in itself is scary as hell. Yes, I know the final results will be more finite, but…'

 Am I contributing to this medical industrial complex? Why yes, I am. Where is the line between making yourself “better” and accepting yourself  just for what you are? I don't know. Where is the line between autonomy and dependency, on drugs? I don't know. Where is the line between human and machine? I don't know. I live in a  shade of gray.