Living With a Stroke: 31 March 23

One of the things I had to deal with and overcome, outside of having to relearn how to walk and use my right hand was… doing day to day stuff.

Taking a shower was not only painful but it was scary because I was cautioned, upon my release from the hospital, to be very careful of falling since there was no telling what my right leg was going to do. Just moving around the house was often a problem and trying to work on the walking thing with a walker that tended to be more of a hinderance than a help.

I’d been home for, oh, maybe two weeks, before I dared to go upstairs. It was… terrifying. I kinda couldn’t feel what my right foot was doing and I’m trying to climb the stairs while looking at my feet and holding onto the rail and, yeah, my right foot totally missed the step, I overbalanced and damned near pulled the rail out of the wall. I got fussed at for pushing this but I was determined to walk on my own again and after the therapists said that I should be prepared to not be able to walk unassisted again.

Being right-handed, one “fear” I had was… shaving. I knew that my fine motor skills were shot and while I had to go to therapy after being in the hospital and they worked on getting my hand to act like it was my hand, I’m standing in the downstairs powder room, face messily lathered up – because I tried to do it the way I’ve always done it – and I’ve got my razor in hand and… I just know that I was going to cut the shit out of my face. Okay, we can do this… left-handed. I managed to not hack my face up as badly as it would have happened if I did it right-handed; I could only laugh to see my reflection in the mirror and my face is dotted with tiny pieces of toilet paper.

The same issue with brushing my teeth; my brain said, “You know how to do this!” and, of course, I did but… my right arm just wasn’t on the same page with my brain and doing it left-handed was just as comical.

I was frustrated. Between struggling to be “normal” and being on transdermal fentanyl for that crazy-assed pain, I couldn’t do a damned thing except, um, I could have sex but I’d come to understand that the drug, again, got me so stoned that I wouldn’t know that I was in pain and, well, I could just do stuff as usual. I’m surprised that I didn’t fall or otherwise hurt myself like the day when I slapped on a new patch – and that initial rush of fentanyl was insane! I was in the bathroom when I applied the patch and the next thing I knew, I was on the sofa… and with zero memory of how I got there.

Being on the phone and talking one moment and out like a light the very next one. I found that looking at the humor in these things worked to keep the frustration and depression at bay, but they were both right on the edge of my awareness and I was not going to let it defeat me. I had decided one day to walk from the living room to the kitchen without that damned walker. Before the stroke, I could get there in seconds; after the stroke, it took me almost five minutes because I knew I wasn’t as stable as muscle memory was insisting I was. All too often, I’d fester in my frustration and telling myself, “You fucking know how to walk! If you learned how to walk once, you can learn how to do it again!”

And having to come to terms that my feet and legs weren’t going to be on the same page again, well, not as they used to be. Fuck, I almost fell… standing still. It was as if my right leg said, “Fuck this standing up shit – I’m going back on break!” It fucked with my head to feel the right-side deficits and knowing that something stupidly simple as putting my right foot forward was… off; that process that says, “Okay, step with the right foot” was, well, off, like the signal was a female pubic hair too slow getting to where it had to be.

Thoughts about not wanting to be a burden plagued me in the early days of my recovery. I had to be able to function, the fentanyl wasn’t helping toward this very necessary goal and to make things a bit more complicated, I had to get pushed up to 75 mcg because the pain steamrolled the lower dose… and I knew how fucking scary and dangerous fentanyl could be. I did not want to be dependent on it; one day, I’d forgotten to slap on a new patch and went through withdrawal and it made me feel worse than having the stroke did. I’d forgotten it because my self-assigned task for the day was… relearning how to use a mouse. You have no idea how much coordination is needed to do that but I got a hard lesson that day… and a harder one in put the cart before the horse.

Once I figured out why I felt so shitty, I somehow made it to the bathroom so I could wash and dry the place on my side where the patch was going – and I had to be careful to not put it where I originally had it; that could lead to an overdose. Crazy, huh? I slapped the patch on, that fentanyl rush bitch-slapped the shit out of me and when I kinda came to my senses, I was… sitting on the toilet and didn’t remember doing it. Then it was like I blinked and now I was back in the living room (and no memory of going there), on the sofa and talking about… something.

Then I passed out. Lessons learned. Sometimes lying awake in the dead of night and trying to wiggle my toes and feeling the slow response and… got a cramp in my foot. Instinctively jumped up to walk it off. Oh, yeah, that’s right – I can’t do that anymore. Balance shot to hell and by the time I stopped stumbling to keep from falling, I was in the dining room. Oh, and woke my wife and poly wife up making all that noise and, yeah, got scolded in stereo.

The hard part for me during this critical time was trying to wrap my head around the fact that I cannot do things the way I knew how to do them. I’d sometimes sit and do the part of the neurological exam where you touch each finger to your thumb and feeling the lag. I’d tried playing my keyboard and my left hand was totally onboard, but it was like my right hand had no idea of what it was supposed to do and then wouldn’t do it fast enough. So frustrating. So depressing. I couldn’t accept this and while no one really said anything about “giving up” trying to get back to 100%, having to deal with the reality that it’s never going to be like that again, barring some kind of miracle.

I’d read about some procedures where they can operate on someone’s brain to remove any scarring or damage and such procedures had a lot of success in a stroke victim’s recovery except where my stroke hit, the area is inaccessible and deemed to be too dangerous. Kinda fine because the thought of having my head opened and my brain messed with didn’t give me the warm and fuzzies. I was… stuck with this. But giving up wasn’t an option.

I’d told someone, “I know that I’ll never get back to 100% but there’s nothing that says I can’t keep trying!” It was – and still is – and effort in futility. You try not to think about it but there’s no way to avoid having to think about it since everything you do… isn’t quite right. I suffered some crazy insomnia because I was afraid to go to sleep; sometimes, I’d be awake for like three straight days before crashing and burning and, yeah, being seriously grateful to wake up. Why? Because my neurologist said that I was still in a period where I could have another stroke. My PCP prescribed sleeping pills and they helped but I’d wake up groggy and not all that functional and, damn, everything was going into the shitter and there was little I could do about it.

I could barely walk; couldn’t use my right hand well enough to be able to write my name. I was getting a lesson in fine motor control that you normally don’t think about or even notice but now, I could. Same with my foot; I mean, who knew how your toes coordinate with the rest of your foot and making a lot of adjustments just to take a single step? I found out about it. Even today, wearing a sock on my right foot gets interesting because my toes and foot can’t make those fine adjustments to keep the sock on straight. One the one hand, it’s hilarious and more so when I realized that, in fact, my right hand didn’t know what my left hand was doing or, really, it gets the email late.

Interestingly, I relearned how to type before I relearned how to write my name or to write anything and it not look like a toddler tried to write it. Why? I have no idea but I know that touch typing requires a lot of coordination, but it was like my brain said, “Okay, we know how to do this, too, so stop fucking around and do it!” As previously mentioned, before the stroke, I could type at 90wpm and it became a goal for me. I’d do timed writings and get frustrated because I know they’re a combination of speed and a lack of errors… and I had errors galore. And my right hand hurt like a bitch.

It still does when I’m typing today… at 90wpm. During my recovery and rehabilitation, I learned a lot about muscle memory and how my stroke… disconnected it and now it was about reconnecting it and to the best of my ability. I spent an hour one day… trying to thread a needle. Not that I needed to but just trying to do it. Muscle memory knew how to do it… my hand wasn’t having any of it. I would think that if there is some really fucked up shit about having a stroke, it’s that you know how to do stuff and… you can’t do it or do it well.

I remember talking to my mom and mentioning that I didn’t know which was worse: Having the stroke or working at recovering from it. My mind was in a dark place and, again, I fully understood why people in unbearable pain takes their life because you will do anything to make the pain stop. Fentanyl was no longer an option for me because I needed to be able to function as best I could and the price of the drug went through the roof and I could no longer afford it.

I would become very aware of how much mental energy it takes to “ignore” the pain. I think that, at one point, I was… insane and didn’t know I was; I only realized/theorized this after I’d gotten better at having my shit together. Never, ever underestimate or discount what pain can do to you. Not letting it make you lose your temper and as what happened to me in my next to last therapy session where the therapist was working on my fine motor control and kept telling me that I could do it but the pain was kicking my ass and… I went medieval on the woman and it was not pretty. I was so embarrassed and couldn’t apologize to her enough and, okay, let’s not do that again.

I had the chance to talk with other stroke survivors and had fun exchanging “war stories” with them. One woman asked, “How have you managed to be so upbeat about this?” and I said, “It’s either that or I let all of this beat me down and I can’t allow that to happen. It takes a lot of focus and determination to not let this defeat me.”

Being in the moment and not really looking forward or pass that specific moment. The Lyrica takes some of the edge off but since I know now that I will never be rid of the pain I… kind of embrace it. Pain tells you two things. The first is that something’s wrong and the second is that you’re still alive. Methinks this is a great starting point and more so when, again, this could have been worse. The pain…. is what it is. My biggest problem, over a decade later, is… muscle memory. What my brain knows that my body can’t quite do correctly. My lady called me one day to come look at something and… I just jumped up and started moving and like I’ve done so many times in my life and… wound up bouncing off of a wall. Oh, yeah, totally forgot that I can’t do that like I used to be able to do.

You would think that after all this time, I’d know this and the hilariously funny part is that I do know it… but muscle memory still hasn’t gotten the email. I trip over my feet damned near all of the time; my foot wants to drag and it’s so frustrating! I sometimes literally have to tell myself to slow down; my brain and body are on the same page with that but my right foot… has its own idea of things. I wiggle the toes on my right foot so much that, sometimes, I’m not aware that I’m doing it… until I get a cramp in my foot. It’s funny as fuck and not really because, again, I can feel the lag; it’s not numbness and it’s not stiffness but it feels like those two things; it’s that the muscle response… ain’t what it used to be.

Funny but not funny when I get asked… if I have any numbness of tingling. Shit, that’s every day! I had a stroke! Which could be a serious problem since numbness and tingling are warning signs of something being wrong and if something was, chances are I wouldn’t be aware of it since, again, I feel like that all of the time but it’s not either of those two things. Being asked what my pain levels is from zero to ten and I’m usually at a four, but it can go to seven rather easily. Oh, and how long have you had this pain? For over ten years because I had a stroke. Have I had any falls? Fortunately, no, but I’ve come close a few times and I don’t count the times when our late cat would, for some reason, just go after my right foot or she’d get in between my legs or lay her fuzzy ass exactly where I’m trying to put my foot and sometimes, I’d just make myself sit down.

It’s funny even though this is no laughing matter. I have to be able to see and embrace the humor because the alternative is unattractive and not somewhere I want to be. I gotta find the humor in whatever I’m doing like, um, I can’t masturbate right-handed anymore. I keep trying and… it looks like a monkey fucking a football and so unbelievably uncoordinated that all I can do is laugh about it. Even funnier teaching myself how to do it left-handed and I can testify at how not helpful it is to be trying to get yourself off and laughing at the same time.

As far as the stroke goes, I’m not getting any better but I’m not getting any worse. I… accept this because how can I not accept it? What I don’t have to do – what I’m not going to do – is let this drag me into the pit of despair. I go to the doctor and sometimes get asked about being depressed and I’ve depressed since I had the stroke because this pain is no joke… but I got this. I’ve mentioned before that writing my blog is… therapy. Working on my fine motor skills and testing the shit out of my memory. A continuous effort to combat the never-ending pain that I’m feeling right now.

And none of what I’ve done in this was easy to do. I’m disabled and brain damaged and, for some reason, I tend to find that to be a little funny since the people who really know me likes to say that I’ve never been right in the head. But, all things considered, I’m… okay. Recovering is a motherfucker and a bitch but what I’d tell someone recovering from a stroke is don’t give up; don’t fall into the trap of feeling sorry for yourself; fight a good fight to be able to do… whatever you can do. Do your best to fight through the frustration and whatever depression is trying to mess with you.

You have people who want to help you get through this – let them help! You’re not a burden to them! Do your best not to take any frustration out on them and more so when they’re just as upset and/or afraid about what happened to you.

Improvise, adapt, and overcome.

 

Living With a Stroke: 28 March 23

In March of 2006, I had a stroke. It was weird in that in the moment it happened, I knew what was happening. I’d been sitting at my desk and doing something on my computer when… I didn’t feel right. Oh, shit, I think I’m having a stroke! I got up and headed for the downstairs bathroom because I wanted to see if I had a blown pupil but… I never made it. I collapsed onto the steps heading upstairs and said, “Call 911 and tell them I’m having a stroke.”

My ladies had helped me onto the sofa; three minutes later, the paramedics showed up and I’m having a conversation with them about what happened, how was I feeling, what could I move, etc.. They rush me to the ER and a team of doctors and nurses are all over me and I’m thinking that this is it: I’m going to die.

The attending doctor orders an MRI of my head and then tells me that they want to give me what I know as the “rotor-rooter drug” that will do one of two things: It’ll either work on whatever caused me to stroke or… it could kill me. Well, I’m thinking that I’m moments away from dying anyway so I told them that (a) I knew about the drug, (b) knew that they had to give it to me right now (c) I knew the risks and (d) give it to me.

They do, I go for another MRI and I’m in the ER waiting for them to find and prepare a room for me and the funniest thing happened: I was still alive. I actually laugh aloud (had a nurse run in to see what was up) because I knew, at this point, if the stroke was going to kill me, I’d be dead already.

They put me in a room with a man who had had a stroke, too. I figured he was in some seriously bad shape because doctors and nurses were coming in the room a lot, he’s moaning and making noises and I’m trying to chill out and sleep and, nope, wasn’t happening. I asked the nurse that came in to take my vitals if that poor man had a major stroke and she said, “No, he had a mild one.”

I thought, “Fuck me… that’s what a mild stroke looks like? Damn… let’s thank God because I’m not like him!”

My neurologist couldn’t figure out why I had a stroke. He showed me where my brain got damaged but what caused it was a mystery and mainly, they were looking for clots or bleeds in my head and there was no indication of those things or what he called “classic signs” of having a stroke. He said that I was lucky and I agreed with him but I did ask him about the pain I was feeling, and it was pretty bad. He tells me that, sometimes, someone can have a stroke and experience this pain, but it usually goes away fairly quickly and I let him know that I started feeling it in the ER and it was still going strong.

My face was feeling like someone was slapping the shit out of me; my whole right side felt like it was on fire, like someone was spraying acid on me. He couldn’t tell me definitively if this was temporary or permanent. Yeah, it’s permanent. It was so bad that I couldn’t stand anything touching me and that included the air itself. I had to relearn how to walk and use my right hand and if you’ve never had to do that, it is seriously weird because my brain knows what to do but the right side of my body… was getting the email later than my left side was.

I would find myself instinctively doing stuff like getting up from where I was sitting and… winding up on the floor. Getting yelled at and reminded that I can’t do things they way I used to do them before. I knew that but my brain didn’t. Going through rehab; getting on SSD. Decided one day that I was going to go for a drive just to see if I could do it. Yeah, if you’re thinking that it was a crazy and dangerous thing to do, you’re right – I knew it was but I was on a mission to get back to being as close to normal as possible and more so when the folks at the hospital truthfully said that I might not walk again.

Yeah, tell me that I can’t do something. Challenge accepted. I was learning that some folks who have strokes tend to fall into great depression but the only thing that was really bothering me was… the 24/7 pain. Otherwise, I knew I had to keep my spirits up and I got to understand why some people in great pain… commit suicide. I was there and I knew it; I needed it to stop but knew that it might not. Got put on transdermal fentanyl. Holy shit! I would be so stoned that I didn’t even know I was in pain. Or I could be talking to someone one moment and out like a light the next one. Serious stuff like, um, did my dick still work? Would I be able to play piano again – because I could. Was pretty amazed that not only did my dick work but being on fentanyl had an interesting side effect: Delayed ejaculation. I could fuck for hours. Ya mon! Well, my ladies came to not liking that all that much and I understood but, yeah, I’m a guy.

All of this aside, having a stroke is one of those things that no one should experience. I wouldn’t wish this on my worst enemy. I’d say that, today, I’m like 90% of the way I was before the stroke or thereabout. I can do… stuff. The pain is still with me and even though I now take Lyrica, at best, it takes the edge off so that a mere breeze doesn’t feel like I’m being burned alive. I think out of all the things the stroke left behind, this is the worst thing.

I have to literally make myself take a shower because… the water hurts. Being cold hurts; being hot and sweaty drives me crazy at times. That ever-present feeling of being slapped in the face. Feeling the… delay when I use my right hand and, man, let me tell you, that’s fucking weird! I got the walking thing back together but, one day, learned that… I can’t run. I’d got into blogging because I thought it would be fun but it’s also therapy because, before the stroke, I could type at 90wpm, and I was determined to get back to this but… it hurts to type. I could play my keyboard; one big fear was losing my ability to play and I can but… it hurts. Trying to be as normal as I can… hurts.

The biggest challenge I continue to face is… not letting this fuck with my head. Keeping my sense of humor; I can laugh at the fact that I’m brain damaged because I am – I’ve seen it on the MRIs. That little, tiny spot that wound up changing my life forever. If you were just sitting and talking to me, you would never guess that I had had a stroke because I was spared the worst things that can happen. Walking with a limp… fucks with me. I fucking know how to walk! I’ve been doing it since before I was two years old! My balance was honed by years of martial arts training is shot to hell and to the extent that can be standing up and still and it can get interesting.

After all this time, I still keep trying to do things and like I’d always done them; it’s like my brain doesn’t accept that I can’t just jump up and move quickly and, well, it’s pretty funny but pisses me off because I know that I can’t do that but my stupid brain… hasn’t gotten the email yet. I have the very weird thing of having to haul ass to the bathroom to pee and, sometimes, not making it in time – but if I’m not at home, no problems.

I really got into playing games on my Xbox because, for one, you need hand-eye coordination to deal with the controller and, for another, it made me focus on what I was doing… and not the pain. I’m more left-handed than right-handed and out of necessity because I can’t really trust my right hand to do stuff when I need it to do it and, oh, yeah, it hurts. I have gaps in my memories and it’s weird that I can “feel” the gaps but I don’t let that fuck with me because there’s nothing that can be done about it. Otherwise, I can and do remember a lot of stuff; it’s the stuff that makes me ask, “Why do I know this?” that sometimes makes me scratch my head.

I can remember a song I heard way back in the 1970s but I can’t remember my current lady visiting me in the hospital and sometimes, I can’t remember what I don’t remember. It bothers me at times, but I’ve learned over the years to, again, not let it fuck with me because the things I can remember are still there and accessible.

Having had a stroke… sucks. Why I had one is still anyone’s guess and it’s no longer that important; it happened. I survived it and have accepted that I will never be “normal” again… but not for a lack of trying because giving up… isn’t an option. I fucking hate having to be pushed around in a wheelchair when I’m flying somewhere; I hate the looks some people give me at the gate that’s either pity or they think I’m faking just so I can board the flight before them. I appreciate – but kinda don’t like – people opening doors for me or asking me if I can make it.

I really hate having to have other surgeries and being flagged as a fall risk. I had had to have my repaired AAA repaired because it was leaking. I’m lying in bed watching TV and… I gotta pee. I survey my situation; I’ve got IVs in but the machine is on wheels (and I know how to unlock them); I’ve got a portable monitor attached but not a problem… unless one of the damned leads come off again and alerts the nurses’ station. I climb out of the bed and… an alarm goes off and it is loud, too. What the fuck? I make my way to the bathroom, pee, and when I come out, there are three nurses standing there – and they are not happy with me.

What I wanted to know was how they knew I wasn’t in bed and get told that I’ve been in a new kind of bed that knows how much I weigh and if I get out of bed, an alarm goes off. Getting scolded about being a fall risk and, fuck no, I haven’t fallen since the stroke and I not only don’t plan on falling but I took judo for a lot of years, and I know how to fall without hurting myself.

Realized that I still remembered this every time the cat would make me stumble; it was like that hussy would try to purposely trip me up – and then look at me like it was an accident.

I got a lesson in… muscle memory. My body… remembers how to do stuff. My brain, that asshole, remembers how to do stuff, too, but it knows that, again, I can’t jump up and run into the next room… and I still try to do it at times. All I can do is laugh about it. I am… hypersensitive on my right side and from head to toe. Funny story about that.

The first time I had sex after the stroke got really interesting when I came… and that’s putting it nicely and mildly. My orgasms and feelings when I ejaculate are intense and I mean I very seriously feel it and it was fucking scary then and it still is; I haven’t gotten used to it and, well, it is what it is. It hits me hard. A reminder that I no longer have that level of muscle control over my right leg and it gets to shaking like crazy which is pretty funny but not really. How about that – there is such a thing of it feeling too good.

It could have been worse. There was a point, early on in things, where I wondered if dying would have been better because dealing with the shit the stroke left behind keeps testing my strength of will. I was talking to my mother about the pain and she said that she was surprised – and had thanked God – that it hadn’t driven me insane… and I wasn’t sure that it hadn’t – I just didn’t know it had. She also had said, “God’s not done with you yet…” and it seems to be the case.

I try to live with this and like it never happened – but there’s no denying that it did. It still fucks with me that it happened because we don’t know why it did and there’s a part of me that can’t accept that this is how it’s going to be. I get reminded of it every damned day but I remain totally determined to not let this defeat me and to keep my spirits high. The constant pain is depressing as fuck but I can’t let it throw me into the pit; no, I’m stronger than that; I’m better than that.

Because anything less is unacceptable. I can either laugh or cry about it and I choose laughter since, yeah, sometimes, it’s pretty hilarious, like, yeah, y’all should have seen me trying to do “Hip-hop Abs.” Or trying to walk on a treadmill. Or just walking and my right leg and foot aren’t on the same page with its left-side counterparts, and I stumble a lot. I refuse to use a walker or cane and it’s not macho arrogance but being determined to not let this deficit kick my ass.

Living with a stroke is a bitch and a couple of motherfuckers. I do not recommend it. It is a struggle and unlike anything you might have ever experienced. My doctors opine that my stroke was stress-induced. Might have been but I can’t say but if that’s true, having a stroke is a lesson you do not want to teach you about avoiding stress and, yes, I can’t stress that enough. When I get into my own head about this, I always remember that man in the room with me and his stroke was mild. I was sure that I was going to hear his monitor flat line any second now and one time I did – but that’s because all the thrashing he was doing knocked off a lead.

That could have been me. It could be you if you’re not mitigating the stresses and stressors in your life. If you have high blood pressure, take the medicine and don’t get fooled into thinking that because you feel better, you don’t need to keep taking it. I know someone who did that and… had a stroke and it was bad. Don’t do this to yourself because there’s no telling what the outcome will be, you know, if it doesn’t take you out.

I needed to write this. I went through some shit trying to recover and some of it was pretty ugly and had put me in a bad place. You do not want to experience this.

 

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…

 

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!

 

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…

 

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.

 

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…

 

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.