Monday, March 23, 2015
The High Cost of Freedom
How many times in how many posts have I typed those two words together? How many times have I reported that the behaviors were on the upswing? That we were experiencing some great advances because of this new X or that new Y?
Not often to my recollection. But then again...I'm the glass half full of shit guy, remember?
Still I did go back and check. Despite the fact that this blog is so decimated by broken picture links and long gaps of nothingnesses, not to mention it really has an issue with finding a true direction (and audience, probably because of that direction and nothingness thing) Bennett's tendency to go from Banner to Hulk has been going on since a short time after his brain surgery.
Before that? He didn't have these problems.
Granted, he was having these fucking horrible seizures in the background of his head 24-7, and then when the seizures could not be contained anymore, his brain couldn't take it and he would suddenly start to jackknife and the full manifestation of the Infantile Spasms could be seen by all, and felt by him. That would last anywhere from a few minutes to ten or more, until it passed and then he would get very sleepy.
Did those explosions of brainwave activity cause him pain? Did they scare him? They seemed to knock the wind out of him, just the sheer sharp intensity of some of the convulsions, and at times he wanted to cry, or scream out.
What was going on through his eyes. What was he feeling? I ached to understand. As his father I wanted nothing more than to make them stop certainly, but I also yearned to know what was happening on an intellectual level, maybe believing foolishly that the more information I could gather the more I could do.
Helpless, ignorant and full of despair is no way to live your life.
Of course back then he could not communicate his feelings or thoughts to us.
When I think about his recent slide in the behavioral area, I started to think about days gone by. Connections were made by me, whether they matter or not, between how similar his seizure events are to his behavioral Hulk-Outs.
He will go on about his day, things will build, I can see them growing, an emotional pimple getting fatter and rounder as the day gets longer, and I will do what I can to stop it. I will try to redirect him away from what I know is around the corner. I try to be sure that I don't contribute to it, that I don't somehow (by thinking about it or having it in my head) do anything that might unconsciously contribute to its arrival.
I've learned that over the years, that I can cause things by simply NOT wanting them to happen. I'll explain some other day to those that wanna know.
But with Bennett, he pressure cooks and eventually has to explode. I don't know why. I can do EVERYTHING the right way. And I mean everything. But he still has to explode. Maybe it is because after all this time he can't communicate well. Maybe something happened in his brain during the surgery...I don't mean a malpractice thing, I mean that maybe parts were removed that usually keep people from having the problems he has.
Maybe he can't release these feelings and emotions any other way, though I have tried to give him outlets to do so. Maybe he needs the attention, though in the outbursts I try to balance attention with non-attention and keeping the place under control. All the stuff you get taught.
Or maybe, just maybe...this is the price we pay, this is the price he pays, for his life, for the golf ball sized grade II tumor being gone. For being seizure free. I don't want to believe that. But I do sometimes.
I'm standing here at my laptop, thinking about what to write, how to say it. I rigged a standing set-up only because the pain in my body is at an all-time high. Has been for months. No answers. I stopped asking questions too. of the medical community anyway. I just do what I can and accept being in agony every day. Mentally, physically, emotionally.
As I listen upstairs, to the Home Health Aide contain Bennett as he is in Hulk mode, I have to resist the urge to go up there and intercede. I'm trying to let her get into a place with Bennett where he respects her, and every time I jump in that makes her job harder. The problem is that she needs to take a bit more control, and more actively pursue Bennett when he is on the move. She relies to much on waiting for him top come to her. She has to go to him, otherwise stuff happens too fast.
It's not easy...I hear him throwing stuff, and I hope that she can get him contained quickly and calmly. I started the clock. I have a limit, an amount of time that she has, and also a certain meter of the amount of things I will allow as far as thuds. So far it is manageable.
The idea behind some of this is so that I can be down here working, Jen can be in her office upstairs working, Carter can have some more time with either one of us, and Bennett can have some guidance and someone to work with him on daily living essentials throughout the early evening. When it works? It's supposed to give all of us a lot more Freedom. But Freedom has a price, just like everything else.
I feel trapped down here. Trapped in this cold, damp basement office.
Helpless, ignorant and full of despair.
It really is no way to go through life. Not for me, not for my family, especially not for Bennett. Every time I hear how much Bennett suffers, which is, of late, daily, it sets my progress of climbing out of this depressive valley I am in back a lot of long, lonely yards.
My son is in distress, they both are, and I can't help them.
Free? Nah...I'm feeling about as far away from free as I can remember being in a long, long time.