The Beginning

28 May

I decided to come to WordPress and do some blogging after seeing some of the blogs by someone I know and felt that it was a good way for me to get a lot of stuff off my mind and preserve it for some form of posterity.

Some of this is about how I’ve lived, what I’ve thought, and how I perceive things around me to be.  In some things, I could be right on the money while other things could be seen as being way off base – but this is really about me and how I see – and have seen – the world around me.  So sit back and enjoy this glimpse inside of my head.

One of the first things I’ll write about is dealing with having a stroke.  On March 11, 2007, I suffered a CVA, which came right out of nowhere.  When it happened, I knew what was happening and while I was concerned, I can’t say that I was really afraid.  In fact, when the paramedics arrived, I was awake and joking with them all the way to the hospital even though I couldn’t move my right arm and leg very well.  There was a life-or-death decision to make and I made it without really giving it a second thought; prior to that, I knew that whatever happened could still kill me but realized that if I were still able to lie on the stretcher and think about it, that probably wouldn’t happen.  Instead of the fear of dying dominating my thoughts, I was more annoyed that there was now going to be things I’d no longer be able to do – and that pissed me off.

In the four days I spent in the hospital, the events did get me down eventually, especially when the pain started.  The neurosurgeon attending me gave it to me straight:  The pain wasn’t unusual, given what happened – and he wasn’t quite sure why it did – but it would ether eventually go away… or it never will.

Well, guess what?  Three years later, I’ve gotten used to the fact that I can’t walk as well as I once did, not because of any paralysis but due to a lack of  fine motor control.  I can walk; being right-handed, I can do things I need to do, although my handwriting kinda sucks – but that’s that fine motor control thing.  If I didn’t tell you I had had a stroke, you’d probably not know it.  For me, the worst thing wasn’t having the stroke – it’s dealing with the 24/7 pain.

There was a time when I’d read where someone had ended their life because they could no longer live with the pain and I used to think that it didn’t make any sense to me.  My thinking wasn’t so different than a lot of people in that since I had no idea what it was like to always be in pain, a decision to end it permanently just didn’t make sense.

I now know why people make that decision because I’ve come close to making the same one myself.  When people ask me about it, the best way I can describe it is to tell them to think about the worst pain they’ve ever felt – then imagine what it would be like for it to never go away and that no medication you can take will come close to taking the edge off of it.

It’s a bitch to live with, this pain of mine.  Medically, I understand what happened – the thalamus, the literal pain center of the human body, got damaged by the stroke and it’s made me hypersensitive, meaning that all sensory input to the right side of my body is greatly enhanced and is being perceived as pain.  There are times when I can’t stand to wear clothing; the slightest breeze is felt more than ever before, and even changes in temperature are enough to drive me nuts.

The pain was making me crazy because even when I slept – when I could sleep – it made its presence known.  To me, my greatest fear was coming to light:  I was losing my mind and there didn’t seem to be a whole lot I could do about it.

It took a particular chain of events to happen before I could even get a grip on it, inasmuch as anyone can wrap their head around always being in pain.  It’s hard being in a relationship with someone and expected to behave normally when “normal” no longer applies to you.  Things I knew I should be able to do became almost impossible because I couldn’t do them without making the pain worse:  Even something as routine as taking a shower was something I had to gird my loins to do because the resulting pain would have me in tears.

Thankfully, the only thing it didn’t have an effect on was my ability to have sex – and that was in question for a long time.  The day I was able to have an erection was as monumental to me as the birth of my first child!  However, even that wasn’t completely unscathed because any orgasms I felt caused that weird painful pleasure and it’s not as much fun as you think.  Muscles you normally have control over just behave anyway they want to, especially the ones that control movement and, yes, even how you ejaculate, which are tied to the simple act of peeing.

It’s not fun.  I’m alive and doing okay… but there are times when I feel that either paralysis or death would have been a better option than to have to deal with this pain.  There’s medication I take for it but all it does is take a tiny bit of the edge off – but maybe that’s what I needed in order for me to get my head around dealing with it.

Once I was able to do that, I came to realize that it’s not a simple thing of just accepting it and going on; no, it takes a great deal of mental effort to not let the pain drive me insane and that effort is just as non-stop as the pain itself.  I always have to be on guard; the pain makes you quick to anger and, when I’m angry, I’m dangerous to begin with – the pain makes me even more dangerous.  I warn people not to touch my right side and I’ve almost seriously hurt people for even the slightest touch, even if I know the touch is necessary.

It makes my girlfriend very leery of me, too, and that bothers me.  While I can have sex, it makes her afraid to initiate it with me because she’s seen where touching me in certain places will set me off.  I try to convince her that, now, I can accept the pain that comes along with her touch because there’s no way to avoid it and, yeah, I wanna get laid – it’s now become an occupational hazard and those things I understand.

I have the pain and I may always have it, although I pray for the day when I wake up one morning and it’s no longer there – and I’m not dead.  Neither has happened but I learned quickly that I can’t ever give up hope that the pain will go away.

My sense of humor has gone a long way to keeping me sane (other than the Grace of God, that is); as bad as the pain is and can be, I can find something funny about it.  My intelligence refuses to believe that I can’t deal with this and I challenge myself to keep this true because I can deal with it – and I will.  Most people would have folded by now and even I’m surprised that the pain hasn’t driven me insane, although it has affected the way I think.

Because of the stroke, I’m almost always thinking about death, being very much aware that I could have the same thing happen again and, if it does, that’s it – and I won’t even know that I was dying.  I dream of dying.  My father passed away a year ago and at times I see him lying in his casket and, since I look like him, I see myself and I wake up either in tears or telling myself that I don’t want to die and that even though one day I will, it’s not gonna be today if I can help it.

It’s hard to fight against the darkness that dwells in your mind.  If you never really have a life-threatening event happen to you, you never really think about it.  But if you do, it’s all you want to think about and I’ve seen the danger in letting your mind go there – and I ain’t trying to hear that.

In those dark places in my mind, I think about things in a pre-stroke/post-stroke way – and it pisses me off to see not only the changes in myself but the changes in my life.  There are bridges I had to burn, bridges that today, I know I shouldn’t have destroyed and they got destroyed because I hadn’t learned to deal with the pain.  And there’s no going back.  Maybe it was meant to be; maybe it had to be like this, but I still have regrets about it even though I know that what’s done is done and I have to deal with life the way it is now.

I’ve lost a lot of things and gained a lot more.  I know this and I am always coming to terms about these things even though the dark part of my mind always whispers to me, “If this didn’t happen…”

It’s hard to ignore the whispering because it never, ever stops.  And, maybe, that’s a good thing because it makes me determined to not let what happened ruin my life any more than it already has.

I know I got off damned lucky.  While in the hospital, I had my eyes opened even further.  The man I shared the room with was always having issues that had the staff in the room and working on him at all hours, keeping me awake.  He was in very bad shape – worse than I was – but what gave me the wakeup call was that I learned that the man suffered what they called a MILD stroke.  WTF?  If that was what a mild stroke did, what the hell happened to me?  By comparison, NOTHING happened to me and whenever the pain threatens to overwhelm me, I think back to that man and the things the staff had to do to keep him alive… and count my blessings big time.

It could have been worse.  The reality is that it could still be worse; they say once you have a stroke, the likelihood of you having another is very probable.  It’s scary as hell and it really makes you pay attention to your body like never before.  I get a regular, run-of-the-mill headache and I’m on pins and needles.  I pay more attention to my BP than ever before even though I take medication for it.  I did notice that before this happened, I never had a problem with my pressure… funny how things just happen.

The important things is that despite what happened, I’ve learned not to let it put me and keep me down.  I can do all the things I used to be able to do – I just don’t do them as well as I once did – but I never stop trying to do them.  My mind is intact and maybe even sharper than before.  Just like everything in life, this has been a learning experience and one that’s never going to stop.  Every day I find out more and more about the post-stroke me, some I like, some I’m just okay with, some I really can’t stand – but I’m working on it.

You’ll see other blogs from me and some of them ain’t gonna be for the feint of heart.  But they are things I feel need to be written about and, since I have nothing but time on my hands, I’ll write about them.

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Posted by on 28 May 2010 in Life, Living and Loving


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