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It’s Been Ten Years

My tussle with bronchitis made me forget my tenth rebirth day, which was way back on 11 March and a day I can’t really erase from my memory since it’s a day that changed my life forever.  I am eternally grateful that I’m still around and able to celebrate the fact that when the stroke hit me ten years ago, it didn’t kill me or left me in a vegetative or deteriorating state, although because of the deficits and the pain that’s been with me all this time, yeah, there have been moments when I felt that dead would have been better… but not really.

When I first heard the term “rebirth day,” my physical therapist had asked when it was and I’ll admit I had no idea what she was talking about; I was still in bad shape, pain ripping through me unabated, could barely stand and walk, couldn’t use my right hand to do a lot of stuff, and doing something simple as wearing clothes was sheer torture.  She explained it to me, how people who’ve had strokes and survived them are said to have been reborn, a rather apt thought given that today’s Easter Sunday, huh?

In a way, I guess I have been reborn because I’m not the same person I was before the stroke.  Well, yeah, I am, but not really and there isn’t a day that goes by that I’m not acutely aware of this.  As a matter of fact, the reason I remembered my rebirth day was because I was trying to head off a cramp in my right foot, just one of the downsides of not really being able to move my toes the way I used to.  I felt the cramp coming on, felt how sluggish my toes felt as I tried (and as I have always done for ten long years) to wriggle them and my brain said, as it always does now, “If you hadn’t had the stroke, this wouldn’t be a problem…”

Then I thought, “Oh, shit, that’s right – it’s way past the 11th!  How could I have forgotten?”  Well, spending a lot of time trying to cough up everything you own can let a lot of stuff slip from your mind.  In ten years, I’ve learned – or have had to relearn – a lot of stuff in order to cope with the after affects; some things I still haven’t really been able to compensate for, like walking or, sometimes, doing something as routine as standing up, which can still be pretty interesting all by itself and more so when you have a cat who likes to attack your feet while you’re trying to walk.

To that end, you’d think that after ten years, I wouldn’t be trying to do things as I did them before the stroke – but, yeah, I still find myself trying to do things as if nothing had happened and it’s all muscle memory kind of stuff.  That’s given me a rather unique peek at how my brain works; like, one day, I powered up the Korg Triton to tickle the keys, went to do a simple chromatic C scale to get the fingers loose… and totally flubbed it while noting a spike in the pain in my fingers… and I got pissed, not because I flubbed an elementary piano drill but because I had forgotten that, um, that’s no longer an easy thing for me to do thanks to that split second delay that happens between me thinking about doing it and my right hand actually obeying the command.  My mind – and muscle memory – insists that I know how to do this and that I shouldn’t have to think about it given I’ve been playing since I was ten or so.

It’s literally a painful reminder that what I know doesn’t match the reality of things.  And it’s not like I don’t know this because I do… but because every day is a rehab day for me, I kinda never stop working toward trying to get back to where I was despite understanding that it probably isn’t going to happen but that doesn’t ever mean that I’m gonna give up trying; I’d rather try and fail than to not try at all.  After ten years, the biggest issues aren’t the physical ones; it’s trying to keep my head screwed on right trying to deal with all of this, to not be any more depressed than I already am while not letting the nonstop pain make me want to do something stupid – and all while trying to behave as if I didn’t suffer the stroke.

After ten years, I haven’t gotten any better… but I’ve not gotten any worse; some days are better than others but every day is technically a bad day because I’m no longer the person I was before 11 March 2006.  I’m different… and that’s not really a good thing but it’s way better than the alternatives.  Late last year, my favorite first cousin, whose birthday is a couple of days before mine (but I’m a year older) suffered a stroke and last I heard from him, he came out the other side of it pretty good so he has a rebirth day as well (and I’d have to check out some stuff to find out the exact day).  When I talk to my mother, she often reminds me that God isn’t finished with me yet, that His Grace has spared me many of the not-so-nice alternatives of suffering a stroke and I am very damned thankful…

Because after ten years, I still have this very vivid memory of being moved from ICU to the hospital’s stroke ward and placed in a room with an older man who, I learned, had suffered a mild stroke… and it was a constant battle for the nurses to keep this man alive.  There were many nights I’d be awakened by the nurses and doctors rushing into the room, no doubt alerted by the monitoring system; they’d either get to working on him right there in the room or they’d take him, bed and all, somewhere to work on him – then wake me up as they returned him.

I remember his family coming to visit him one day and I had asked his daughter what was really wrong with him and that’s when I learned he had suffered a mild stroke, which immediately made me realize that if that’s what can happen when you have a mild stroke, Jesus, compared to that poor man, nothing happened to me at all!  Then, one day, I came back to the room after my therapy session that was teaching me how to walk again, and he was gone and I never did find out what happened to him even though I kinda suspected he may have died at the worse or moved to a dedicated stroke facility at the least.  Even though I never learned his name, I have never forgotten this man or what a mild stroke looks like.

After ten years, yes, I still consider myself to be fortunate and blessed, thankful that things aren’t as bad as they could have been.  After ten years, I’m still presented with daily challenges to not let having this stroke get and keep me down; I’m reminded to keep working toward a goal I may never reach but also to keep working with what I have to work with because quitting just is not an option…

 
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Posted by on 27 March 2016 in Life, Living and Loving

 

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He Did What?

I’ve got the writing itch so to help scratch it, I went trolling the web and came across this story:  http://www.cbsnews.com/8301-504763_162-57320571-10391704/rugby-jock-says-stroke-turned-him-gay.

I saw this and blinked very slowly; I have learned that a stroke can change you and in some very crazy ways.  I had a stroke (as some of y’all already know) and one of the things I was concerned with was any noticeable change in my personality as well as my ability to think and remember and, oh, yeah, learning how to walk again and trying to be friends with my never-ending pain.  But this guy says when he came to, um, his sexuality changed so I guess I was wrong when I said that you don’t just wake up one day and decide you’re going to be gay, huh?

Doctors are guess that the injury to his brain may have switched something on or, more realistically, unblocked something he wasn’t aware of – but had been in his head the whole time.  People with MD after their names tend to get a little fuzzy about things because while there’s a lot of things we understand about humans, how our brains actually work remains one of mankind’s greatest mysteries.

I know that once you have a stroke, your brain starts to rewire itself, bypassing damaged areas as best it can and, often, restoring functions, like the ability to walk and talk and other stuff like that.  So, yeah, I have reason to believe – and without any real clinical proof – that it’s quite possible that as his brain rebooted and started rewiring itself, it could have very well tapped into a hidden facet of the man’s mind and, uh-oh, he’s now a gay man.

I really don’t mean to make light of this guy’s plight but I remember the hours following my stroke, lying in the ICU and my biggest concern was being able to survive the doses of TPP – the rotor rooter drug – being fed in to me.  I was worried about being alive and functional… and this guy woke up with a craving for men and dick?  Man, that had to be just as hard of a shock to him as being told he had a stroke!  The good thing is that he seems to have adjusted well to his “new” sexuality and, trust me, when you have a stroke and survive it intact for the most part, having a very positive outlook is high up on the menu… because the alternatives aren’t exactly what I’d call pretty.

I’ve either heard or read stories where people have had some sort of insult to their brains… and have had some of the weirdest shit happen as a result, like being able to speak a foreign language like a native… but have never heard the language spoken before.  Or the woman who suffered some injury – born and raised in America – but has an English accent as if she’s lived in the UK all her natural life.

I know it kinda weirds me out to know that my brain could still be rewiring itself some five – almost six – years after my stroke and, well, it creates a weird sense of distrust in that I’m the way I am now… but there might be some road construction going on in my head that might change that in the blink of an eye.  It doesn’t scare me – much – but I do think it’s hilarious to think about myself in these terms since, before the stroke, I had no reason not to trust that three-pound lump of Silly Putty-like stuff crammed inside my head.

I mean, wow, what happened to this guy would be like my brain doing some rewiring and I wake up one morning just knowing that I’m a woman… until I got up to pee, that is.  I mean, I just can’t see myself waking up and wondering where my boobs went and why I have a dick, ya know?  I really and honestly cannot imagine waking up and, okay, I hurt my head… and I’m no longer attracted to women… but that guy who just came in looks damned appetizing!  Again – and despite me poking a little fun at his predicament – I give him some very major props for being able to (1) adjust to the fact that he had a stroke and (2) the person he wound up being because he had the stroke.

Having a stroke all by itself is a motherfucker to deal with; I had the advantage – or disadvantage – of being very aware of what was happening to me just mere seconds before the stroke literally floored me.  I was conscious and very much aware – I had the guys in the ambulance laughing their asses off as they transported me and, to this very day, I really think it was key to my being able to recover as much as I did.  Like I mentioned, I knew I was going to have to learn how to walk again and use my right hand but other than that – and this fucking pain – I was very lucky not to suffer much more than what I did… as far as I know.

Wow… I’ve had a stroke.  I understand a lot about what goes on with you when you have one (and it doesn’t kill you).  I’m still shaking my head over what’s happened to this guy… and perhaps the human brain is much more amazing than we can ever imagine!

 
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Posted by on 10 November 2011 in Life, Living and Loving

 

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Taking Heat

It’s hot.  It’s been hot and I can remember a time when I just loved hot weather.  Don’t get me wrong; I really like it now, still hate being cold but with my hypersensitivity, well, you can imagine how bad it’s been for me during the steamy month of July.  I’ve never prayed for rain and cloudy skies so much before in my life, anything that’ll keep the temperature over 70 and under 85, not that works for me any longer; 74 was a good temp for me but not even that helps a whole lot.  It can get over 90 degrees in here – and that’s with fans going full blast – and that’s when I reach for the A/C control… then brace for the pain the cold will bring.

Even with medication, it seems as if I suffer no matter what I do to stay cool; too cool, pain; too hot, pain – but with the additional sensation of being burned when I perspire – but only on one side.  I still find it funny that my right side and left side really don’t agree with each other, although I have the “advantage” of knowing that the two sides are aware of each other, even though the left side can’t quite figure out why the right side can’t keep up.

I’ve been in the 100+ degree days of Texas and Arizona; the stupidly muggy and soggy heat of Mississippi – I learned to take the heat, letting it infuse me with its energy; I used to play basketball, running full court games on days so hot even the insects didn’t want to be bothered with bothering you… and for hours on end.  Heat stroke?  Hell, that’s what happens to other people!

Of course, send me somewhere cold and I just wanna hibernate; never liked being cold and falling into an icy creek one winter didn’t help any back in the day.  But this ain’t about the cold – check back with me when winter sets in and you’ll hear some pretty sad – but funny – shit.

Outside of the pain, the heat never bothered me; so you can imagine my surprise when during my last doctor’s visit, he told me my BP was good but low for me – I was dehydrated and I don’t think I’ve ever been dehydrated before, well, during the summer anyway.  On the way home, I inhaled the biggest bottle of Gatorade I could get my hands on right away and I’ve been drinking like a fish ever since (even though fish don’t really drink), even to the point where I slosh when walking.

Left side says, yeah, it’s nice and hot, I’m sweaty (but not funky) and it’s all good; right side is asking for the flow of hydrochloric acid to stop raining on it.  It even feels hotter to my right side which is just so patently stupid all I can do is laugh when I think about it.  As I’ve mentioned before, it’s like one side of me knows what the deal is and the other just ain’t on the same page, almost as if I’m two different people feeling two different things.

If you were watching me, you’d see me touching my face or arm a lot; right hand touching right then left – then left checking.  It might make you think I had OCD; what I’m really doing is trying to find out what I’m feeling.  Brain says one thing; right and left side ain’t buying it.  With my right hand, I touch the right side of my face (that drives me nuts, too) and the sensory feedback tells me, say, I’m burning up.  Touch the left hand to the right side of my face and my left hand says, “What are YOU talking about?  Feels fine to me.

Right hand on left arm – same report; right side thinks the left side needs to call the fire department; left hand to right arm, well, it’s a little warm but not too bad.  It’s crazy, ain’t it?  Sometimes, if I don’t look at the temperature on the computer, I couldn’t tell you what I thought it was – and I used to be able to do that.

The heat brings along with it some scary sensations.  Two of the symptoms of having a stroke is feeling tingling and/or numbness; uh, duh, I feel like that all the time!  You might be watching me – then I start making faces, smiling, waggling my eyebrows, sticking my tongue out – even “looking” up, down, left, and right.  Make me look retarded but I’m really checking to see if everything’s working properly.

It’s hot, I’m sweaty, my right side is sending so many mixed signals on top of making me miserable.  I don’t want to be hot, sure as hell don’t want to be cold – I don’t know what I want to be.  Oh, and if my right side isn’t bathing in sulphuric acid, then it’s the numbness on top of some muscles being weak.  You normally don’t feel your muscles unless you’ve stressed them a lot; there are certain muscles on my right side that I am acutely aware of, like the musculature around my eye.  Normally, you don’t feel these working – I do… kinda.  It’s either I’m not feeling them, giving me that numb feeling, or I’m feeling them too much – the burning feeling I feel as well.  The hotter I get, the worse it feels.

Being hot has me paying attention to stuff I never used to pay attention to before.  I drink too much water, it puts pressure on my diaphragm and it feels like my chest is tightening or it triggers my reflux, both which are also symptoms of heart attack.  Check the pulse; okay, strong and steady and this new pain – which my right side can’t stand, by the way – isn’t the same as a heart attack – but it doesn’t feel good but it’s being caught between the rock and the hard place because if I don’t stay hydrated, apparently, it messes with my BP.

Sheesh…

It might rain… just long enough to make things cool enough that steam rises from the street; then the sun comes back out and brings it’s friend, humidity and it’s cousin, more humidity.  Before the stroke, never bothered me a whole lot; after the stroke, jeez, it’s almost as if I can feel it!  Of course, I can feel breezes on my right side that I can’t feel on the left and, no, that’s not a good thing if you remember me telling you that this pain gets so bad I can’t stand feeling air on my skin.

Doesn’t suck much more than that.  When you toss in that there’s absolutely nothing I can do about any of this, well, you can guess that I’m not enjoying these hot-assed days.  The Lyrica my doctor started me on during the end of winter – and helped with the pain I feel when it’s cold – is getting laughed at in the sultry, steamy hot days and nights; it’s not quite as if I haven’t taken it – it’s just not making a big difference.  Normally, that calls for bringing out the big guns:  the tramadol and oxycotin.  But then all that gets me is hot, stoned, still hurting some and, oh, yeah, wide awake for the next day or so; really messed up to be miserable and you can’t even fall asleep to escape it.

At least now, with the Lyrica, I don’t feel the pain when I sleep like I used to.

Staying hydrated in all this stuff presents one other problem and one I’m sure everyone’s familiar with when you drink too much.  I call it, “Ooh la wee, I sure gotta pee!”  Given that I have muscle weakness (or inefficiency) on my right side, while it didn’t seem to affect my ability to breathe (thank God), it did affect my bladder.  No, I don’t have to wear Depends and it’s not like I can’t hold it… I just better not press my luck on this one.  It’s really pretty funny… as long as I make to the bathroom in time.  The only good thing is that I can go out and not worry about having an accident and, as you might imagine, it only gets interesting when I’m close to coming back in – then you’d better not get between me and the toilet because I will run you over.

I used to love the heat of summer, the nights when heat lightning arcs through the sky, promising rain but never delivering despite deep, bone-felt peals of thunder.  Ah, man, it would feel good to see the breeze come way up then to step outside and just feel so alive and cool as storm generated wind makes the trees rustle like castanets.  The fun of it is gone now because the cooling breezes hurt and bother me and if it should rain, hell, I can’t even run between the raindrops like I used to; if caught in even the shortest of downpours, I’m getting soaked and, trust me, that ain’t gonna make me feel good even when it should.

I like the sun on my face… and I can’t stand it on one side; makes me feel as if someone’s constantly slapping me in the face, with a drizzle of acid for good measure, just in case I get the silly thought in my head that there’s nothing wrong with me.  I dread the night now; pre-stroke, I could sleep through the hottest of nights when the residual heat of the day is bleeding away in the coolness of the night air.  Post-stroke, I feel the heat even more and, God, it’s just not going away fast enough.  Waking up in a pool of sweat on my pillow?  No biggie, just turn it over to the cool side, go back to sleep… but not when it’s like lying in a pool of hot water that’s just short of scalding.  Wiping my face is excruciating on the right side and it makes me wish for the bone-chilling cold of winter – NOT!  Totally different and even more painful animal… but at least I’m not suffering through the heat.

It doesn’t really sap my strength; between the heat and my inability to make the pain go away, this is what messes with me emotionally more than physically.  If it wears on me when it’s cold, it REALLY wears on me when it’s hot… and this is just July, folks.  I still have to survive the dog days of August, summer’s last call for alcohol, before the cooler days of fall, the season I was born in, rolls in and, perhaps, gives me some relief.

Oh, yeah, then I turn around later in the year and go to Miami then the Caribbean – and they don’t know what cold is, do they?  They do know air conditioning, though – oh, joy.  The only good thing about this is I get to repeat an experiment of sorts.  A couple of years ago – and before effective pain meds were found and my mind just wasn’t quite right – we went to Antigua, a place that was so hot and sunny I actually got sunburned for the first time in my life – and I didn’t even know it until I started peeling after we got home.  Loved Antigua but I realized that the whole time I was there, I wasn’t in pain until I walked into our room, that is.  I went from being outside in 90+ degree heat to a room that had been super-cooled down to a frosty 68 degrees.  A quick adjustment to the too-efficient A/C unit saved me from some horrific pain… but that was the only time I was hurting until we got on the plane – then it was business as usual.

I’m hoping that a return trip later in the year makes the pain go away; I’m thinking that the combination of tropical heat and low humidity is what made me pain-free two years ago.  It’s not going to make me wanna move to Jamaica but it’ll give me some empirical data to work with, which could call for purchasing a good quality dehumidifier.  I’ll have to remember to let y’all know how that works out.

Time to sweat and suffer one more night…

 
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Posted by on 20 July 2010 in Life, Living and Loving

 

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Music

I am an accomplished musician, capable of playing a lot of instruments.  I started playing trumpet when I was 7; when I was nine, I learned to play organ the hard way – and on the hardest one to learn on – a huge five-manual church “pipe” organ.  Of course, I couldn’t reach the pedalboard and a couple of the manuals were out of my reach… but I learned.  That’s probably when I truly fell in love with music.  All through school, I played in the band/orchestra and spent a few summers being classically trained on piano, violin (hated that) and cello – wasn’t sure about the string instruments at the time but it helped me when I picked up guitar and both electric bass and upright.  I already knew how to read music but I also learned composition.  I’m a drummer, too, trained in all the NARD rudiments.  By the time I got to high school, I was already playing in a local band as a drummer, more often playing in clubs that, legally, I wasn’t old enough to be in at 15.  When I got out of high school, I guess the musical training was over… but I was more than hooked.

Music was my life.  I’ve played in other bands, at my church, stuff like that; I used to own several guitars, a really nice drum kit, and several professional keyboards and I can’t remember many times when I missed being able to practice.  Now all I have is my Korg Triton, which gets me through and all that.

I’m that guy who always hears music in my head, either songs I’ve heard and I’m always composing songs.  There was a time I used to carry around a manuscript pad and, when a new song popped into my head, I could be found furiously writing it down before I could forget.  I wound up ditching the pad because I learned a few other thing along the way:  MIDI and sequencing.  Now, when a song pops into my head worthy of writing, all I do it bang it out on the Korg and the computer it’s connected to, along with the Sonar software, captures the whole thing and the cool thing is that I can correct my mistakes a lot easier than before – no need for an eraser!

Although I’m well-versed in all the music genres – and I have my favorites, of course – jazz is the genre that I feel gives me the greatest creativity.  A lot of jazz is improv – you literally make it up as you go along, which works for me because while I can sit down and write a classical concerto, I’ve never been able to write a jazz piece before the fact.  Then again, with MIDI and the software I use, I really don’t have to – it’ll even write the sheet music for me.  I think it, I play it, tweak it, and there it is.  Push a button and the software takes all of the parts I’ve input into it and – voila!  A brand new piece of music.

When I had my stroke – and after realizing that I wasn’t going to die – my biggest fear was that I had lost music, meaning the ability to create and perform it.  Indeed, I no longer have the fine muscle control it takes to play as I did before the stroke and, God, that bothers me more than having the stroke did.  But, I was more determined to redevelop my ability to play even more than I was relearning how to walk.  Today, I sit down at the Korg and play something… and it drives me nuts to see my right hand kinda/sorta doing what it knows how to do.

In my head, I KNOW how to do this, even though at my level, a lot of it is muscle memory more than conscious thought.  I do find myself having to actually think about it, something I haven’t done since I first laid my fingers on a keyboard – it was always sit down, look it over to get familiar with it, start playing.  And it pisses me off that I have to think about something I can literally do with my eyes closed.

Sometimes, it is funny; while my left hand just goes on about its business, it’s like my right hand doesn’t quite know what to do – and that’s probably a lot more truer than I care to believe; I can actually feel the difference in my musculature in my right arm, hands and fingers… it’s like parts are missing.  Oh, they’re there… they just aren’t working like everything else is.  You can actually hear me having a conversation with my right hand, telling it to stop fucking around and do it right because it knows how to do it.

And, yeah, I can hear Linda in the other room laughing her ass off…

My mother reminds me that it could have been worse – and she’s right.  She tells me to be patient and keep working at it; I don’t know about the patient part but I’ll never stop working at it because, well, I can’t stop.  The ability to pick up an instrument or sit down with it has been such an integral part of my life, it’s like breathing.  It’s stuff I can do without really giving it a lot of thought and when I play, oh, man, you can’t imagine what that feels like!

What gets me is when I go back and listen to something I’ve already laid down.  I hear things that other people wouldn’t notice – unless they were musicians – and even as I’m listening to it, I’m re-writing in my head, too, making it better, different, or both.  I am my worst critic and even the best thing I can do is often not good enough.  It can be mistake free… but I know the errors in technique, structure, stuff like that.

Then there are times when I listen to something and it just fucking blows me away and makes me say, “I can’t believe I did that…”  I’ve even been caught in that moment when I’m actually playing something and, suddenly, it’s like I’m outside myself and watching myself play and marveling at how my fingers and hands just seem to be operating on their own, as if I have nothing to do with what’s going on.  Simply amazing…

It’s what got my youngest son to learn piano.  One day, he was watching me practice and asked, “Pop, how do you know which key to hit next?”

My mouth opened to answer… and I realized that couldn’t answer him except to say, “I just know…”  I turned to him and said that if he really wanted to know, he should take piano.  Since he was in the middle of a school year, I didn’t think he could – but he managed it and dove in heartily.  I got him a portable keyboard to practice on, too, and would often sit with him and go over what he learned, technique and stuff.  A year later, during his last year in high school, he came home from school and sat down to practice – he played the Moonlight Sonata.  I silently watched him, his fingers plying the keyboard and, Jesus, he played the piece better than I ever could – and I can play the shit out of it.  Right in the middle of it – and as he did to me – I asked, “Hey, Jon – how do you know what key to hit next?”

He stopped playing, opened his mouth… and nothing came out.  After a few seconds, he said, “I just know.”

Then he got pissed with me!  He said, “You know, I hate it when you do that…”

I just laughed and said, “Now you know like I know – back to practice!”

After only about a year and a half of training, he could play better than I could – and all I felt was pride.  When he enrolled in college, he majored in organic chemistry and minored in music.  For this part, he had to audition and he was so nervous and came to me for advice.  I told him how I had to audition for admittance into Julliard and how nervous I was, although for my audition back then, I chose trumpet over the other instruments I could play.  By the way, I was accepted… but I didn’t go, which didn’t make my mother happy.

Anyway, we were talking about what piece he should play and I told him that since he plays the Moonlight better than anything else, he should play that.  Now, I know something about these auditions he didn’t; you’ll come in, tell them what you’re going to perform, then go for it – but at some point, they’ll stop you, thank you, and let you know later if you made the grade; it can be kinda discouraging – I know it ticked me off when, in the middle of playing Flight of the Bumblebee (one of the hardest things to play on trumpet), they did it to me.  I worked a lot of hours and split my lip quite a few times learning that piece from beginning to end… and they stopped me after only 20 measures or so.

On the day Jon was to audition, I went with him and told him not to get upset when they stop him in the middle.  He had a chance to see what I meant with all the other people before him and, yeah, it kinda unnerved him.  I told him, “Just do what you do and do it the best you can, son…”

His turn came up and I saw how the committee’s eyes lit up when he named the piece he’d be doing.  Jon sat down at the beautiful Steinway grand piano, took a breath, and started playing the sonata.  I watched the committee and they were enthralled, as was everyone else in the room except maybe me – I knew he could tear it up.  I knew that he’d be accepted because the committee let him finish the entire piece – and that’s unheard of.  Where they told the other students that they’d be contacted later with their decision, they told Jon before he left that he was in, hands down.  One member asked him how long he’d been playing and mouths flew open when he said, “About a year and half.”

Where I’ve never forgotten my roots, my son went from playing piano and writing his own music… to being a trance DJ.  Go figure.

It’s funny; they say that some of the best musicians are also damned good at math – and music is mathematical.  I guess that meant I was good at math – I got straight A’s in school… but hated it with a passion the whole way.  Likewise, my son hates math, too, but he can play, too.  Must be something to that, huh?  I not only hear music all the time, I see it, too, as if there’s a huge piece of manuscript in my head that I can write on.  I can listen to a recorded song and not only can I hear all of the individual parts, I can focus on just one if I chose to.  I hear an instrument being played and can see the techniques being used – it’s so cool and sometimes, scary as hell because I really don’t know where it comes from – I can just do it and I’m sure other musicians can, too.  I’m the guy who can go to a live concert and pick out every mistake they’re making on the stage, things no one else can here.

My favorite jazz group is Spyro Gyra and I’ve been to a few of their concerts and have all of their CDs.  And, I’ve had the chance to actually talk to them, especially keyboardist Tom Schuman.  After one concert, I was outside getting some air when someone came outside and told me that Tom wanted to see me – and had asked for me by name.  God, I was impressed right out of my underwear – of all the people they see when they tour, he remembered me?

That reminds me; took Jon to an SG concert and when it was over and they came out to sign autographs, he was so psyched it wasn’t funny.  Then he really got blown away when guitarist Julio Fernandez stopped him to talk about the shirt Jon wore to the concert.  After that, there just wasn’t enough room for us, Jon, and his big head…

I even managed to get on the list of drummers to replace Joel when he decided to leave; I didn’t get the gig but the fact that Tom had me added to the list – even though I never got to audition – was enough of a thrill for me.  Somewhere in my prized possessions, I still have the letter the group sent me…

I know Papa Dee Allen, percussionist for the group War; his parents lived across the street from my grandparents like forever.  When I was stationed in the Air Force in California, Papa Dee somehow found out – thanks, granddad – and took me one weekend to hang out with War.  I even got to jam with them and that was so fucking cool!

Without music, I don’t know how my life would have turned out, although I tend to believe that I wouldn’t be who I am now had I not picked up that trumpet so many years ago.

 
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Posted by on 30 June 2010 in Life, Living and Loving

 

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One of those moments…

I’m having one of those bad pain moments, probably due to feeling the slight breeze of the fan blowing on me.  The muscles on the right side of my body have felt stiff since the stroke; not quite paralyzed but not as flexible as their left-side counterparts.  It’s a numb kind of feeling and one that’s a royal pain to work around because I can feel their sluggish response… or that’s what it feels like to me.  On top of this is the pain, the ever-present pain.

The doctor put me on Lyrica which somehow is supposed to be effective against this kind of pain.  I’ve found that most of the time, the 150mg/day I take does take the edge off of the usual rip-roaring pain I had to deal with before.  I tried Fentanyl, a drug that makes heroin look like candy and, for a while, it was effective.  I’d be so stoned that I couldn’t remember that I was in pain.  But, because it was a time-released patch, I’d have what I called “Fentanyl moments” where one moment I’d be lucid and two seconds later, I’d either find I nodded off to sleep, was flying higher than the proverbial kite, or so stoned I couldn’t see straight, let alone do anything else.

I’d probably still be on the patch were it not for the fact that, at the time – and probably still the case – insurance wasn’t going to pay for it and I had to bear the nearly $300/script cost.

So then I switched to a combination of tramadol – aka Ultram – and oxycotin.  Well, it would get me stoned alright… but not as much as the Fentanyl did but there was another side effect I found more troublesome:  It gave me insomnia on top of the insomnia I was already dealing with.  There are times when, undrugged, the pain just will not let me sleep but, eventually, I’d burn out and then sleep for almost a couple of days at a time.

What that combo did was (1) barely dull the pain and (2) keep me awake no matter how tired I was.  Oh, and there were the moments where it didn’t dull the pain and still kept me awake for days at a time before I’d eventually pass out from sheer exhaustion, both from the physical toll of not being able to sleep and the emotional pressure dealing with my infirmaties and the pain.

What bothers me is that now that the weather’s getting hot again, the Lyrica’s not helping a whole lot – but being cold doesn’t make me feel better either.  That’s worse is that a lot of times, I can’t tell whether I’m hot or cold!  My left side tells me the temperature’s comfortable; at the same time, my right side tells me I’m either cold or hot – it’s not sure which it is.  That sounds like a bad thing – and it is; at one point, I couldn’t tell whether water was hot or cold with my right side, which led to the danger of getting scalded – so I learned to check water temp with my left hand, something it wasn’t used to doing.

Now I can tell the difference enough not to burn myself… but most of the time, I don’t know what my right side’s actually feeling, although I suspect my nervous system is overloaded on that side, making the determination difficult.  Think of it as trying to hear a song through a whole lot of static; it’s hard to do and you can barely hear the song – but there’s so much static that all you know is that you hear something.

Right now, my small muscles – the muscles in my face, arm, and hand – are screaming something crazy and all because there’s a slight breeze blowing against me.  The larger muscles of my side and legs are feeling it as well – just not as much as the small muscles.

The funny thing is that as far as my nervous system’s concerned, the left hand really doesn’t know what the right hand’s feeling and I find that oddly hilarious most of the time.  I feel hot when I’m actually cold, cold when I’m hot – and the left side just ain’t buying any of it; as far as it’s concerned, it’s business as usual regardless of the weather indoors or out.

Matter of fact, since this happened to me, I can only remember one tiny window when the pain wasn’t something I was paying attention to:  Three days I spent in Antigua.  It was hot there and something about the kind of heat – more humid, less humid – made my pain kinda go away… until I walked into the room and found that housekeeping had turn the A/C down to 62 degrees – then the pain came back with near crippling force.

It’s like fighting a losing battle.  The hypersensitivity affects my entire right side; even my eyesight is affected although a recent trip to the eye doctor confirms that my vision hasn’t actually changed any over the years – I still wear the same prescription contacts I’ve been wearing for years.  You can’t tell my right eye that, though.  I know it’s sensory input – how my muscles and nerves are amplifying what they’re really feeling and I feel the input as pain or, at the least, something my brain is interpreting as pain.

What I do know is that it doesn’t feel good.  It makes me itchy and uncomfortable and I usually wind up with a headache with the effort it takes for me not to start running around like a maniac.

To make matters worse, I wanna get laid but I know the pain’s not gonna let me enjoy that simple pleasure.  No, it’s not so bad that I can’t get horny or get an erection, although I’ve been there before.  It’s just when I have to focus against the pain, my mind’s not in the gutter where I need it to be and it wears me out to the point where I don’t even want to try to do it because instead of pleasure, all I’m going to feel is more pain.

The Japanese call having an orgasm “the little death” and, boy, have I been killed a lot in my life!  However intense I thought any pre-stroke orgasms were – and I’ve had some doozies – the post-stroke ones are anything but fun.  Normally – for me, I guess – you feel the orgasm and your body’s response to it and it can border on being painful, especially if something decides to cramp up at that moment.  It usually left me with that “Oh, wow” feeling.

Now?  It’s always an, “Oh, my God!” moment.  Not only do I feel it… but I REALLY feel it.  You’ve heard of people saying that having an orgasm makes you feel like you’ve been electrocuted?  Well, yeah, for me, it’s really like that because the pain and pleasure centers of the brain are one and the same.  My nervous system gets overstimulated at orgasm/release and I can really feel that it is and the physical effects are embarrassing, at best, although there’s nothing I can do to control them since I lack that fine motor control my left side still enjoys.  I look and feel as if someone really did stick a cattle prod up my ass.

It’s like taking a leak.  Normally, you just go to the bathroom, whip it out, piss, shake, flush, washing hands, and go on about your business.  For me – and this sound a lot funnier – I can feel myself pissing and my body reacts as if I’m having an orgasm.  It is painful, too; just before the urine starts to flow, it feels like someone’s jammed something into my urethra the wrong way, like from the outside?  The closest thing I can relate it to was the time I had an urinary tract infection; those kinda burn/hurt until it clears up and when I first felt this pain, I thought I had an infection, only to find out that I didn’t.

And this happens every time I pee and, after I get over the pain of it, it’s kinda funny because my right leg will get to shaking and trembling as if I just shot my load.  It can get so bad I actually have to hold onto the wall to make sure I don’t fall down.

And speaking of peeing, I don’t have full control of the muscles that keep me from pissing myself.  Oh, it’s there but I can’t hold it as long as I used to do pre-stroke.  Anymore, if I’m not within a few steps of a toilet, it’ll get embarrassing in a hurry.  Imagine what it’s like when I’m out of the house and there’s no toilet nearby!  But I ain’t proud; I’ll whip it out and piss wherever I have to; easier to pay the fine than to deal with the humiliation of pissing yourself.

More later…

 
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Posted by on 29 May 2010 in Life, Living and Loving

 

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The Beginning

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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