(Not sure if that’s even a thing but, it is for me)
I’ve always been able-bodied. So, my comparison will be based on what I “assume” it’s like to lose function. I can’t really explain it but, my brain feels stuck. I wasn’t born with hydrocephalus so, knowing what life was like before it, makes it hard some days. (OK, most days!). Feeling brain paralysis is like being stuck in a torture chamber or straight jacket. It’s the equivalent of being buried alive!
These examples spring to mind:
- Have you ever been held down (physically) against your will, tried to break free but just felt extremely powerless? To the point where you felt physically ill. Or,
- Can you imagine being able to walk and run, then struck down due to an event, leaving you paralysed – unable to walk or run ever again? But, inside of you, you yearn for the rush that comes with being able to go and do whatever you please. The freedom that accompanies it based on your memory of the experience.
How I feel with my brain
I have all these thoughts inside my head, things I want and need to do and yet…I can’t. Thoughts have slowed down to a crawl. Cognitive function has changed noticeably. I feel useless yet I KNOW I’m not. The balls of life I used to juggle, have all come crashing down. No matter how hard I try, I simply can’t find a way around any of it. Some people might say I’m blaming it on the wrong thing. They may even go so far as to outright refuse that it’s the case, simply because they have no idea how hard I work at getting through each day.
The only two significant things that I’ve endured (aside from 2 other operations), these past 2 years, is brain surgery. Less than a year apart. After both of these, I feel worse off even though other symptoms have improved. Like my blurry/loss of vision, dizziness, headaches and nausea. It’s like I’ve swapped one poison for another. I don’t think it’s a case of being ungrateful or complaining, before anyone judges me.
Even agreeing to have surgery is enough to cause thoughts like, “Is this self-inflicted?” Or, “Maybe I shouldn’t have pushed as hard”. To say I feel “responsible” would be an understatement. The alternative of not doing it though, highly likely, could have resulted in completely losing my vision, or worse. This I know…
At this point in time, I don’t want to hear that I am stronger than I know. Like I’m supposed to just accept the load life throws at me.
What if I don’t want to carry the load?
Asking; “Why not me?”, is not a sign of strength. I’m not looking for a reward or recognition of my endurance. And yes, I have prayed about it – endlessly…
I am in here, inside this body, screaming to get out! But, it’s that same feeling of powerlessness I felt, while being bullied as a child…held down against my will. It’s even more sinister and cruel when you have people who expect you to carry on as normal, when you feel anything but!
I wouldn’t dare tell a person in a wheelchair to get up and walk, yet, that’s exactly the expectation I feel from the pressures of life.