Tuesday, May 27, 2014

The Running Man

I could say that the reason I had not posted in so long after The Triumphant Return was that I just enjoyed turning on my very close to death Dell laptop and seeing that oh-so-beautiful photo of Scarlett Johansson as Black Widow staring back at me. It was like she was saying 'Good morning pal...have a great day!'

And she was saying it directly to ME. Can you imagine?

So WHAT if that is one of the signs of slipping deeper into the abyss of pure insanity? Well, the truth is, that even if I said it, it wouldn't be true. Yeah I noticed the photo from time to time through my sometimes red flickering screen which I could get back if I twisted my LED display in just the right way, but the fact is? I was at another one of those nasty impasses.

When I rebooted this blog, I made a kind of commitment...but I found it to be one I can't keep. I said I was going to turn over a new leaf and be more positive, more upbeat...lay down a different set of cards here than people were used to seeing.

Wanted to. Really wanted to.

Finding it...difficult.

The hardcore truth? I got sucked into a downward spiral that is so hard to climb out of sometimes, and I find it difficult in these times to be positive about ANYTHING. And bitching about it? Well, I always feel like I am disappointing my Mom, my friends, my family, and myself, for not being a stronger, better man.


This makes it incredibly hard to blog. Because when I sit down to write I just want to blow out a wave of rants and jabs and wackiness. You know...everything I always used to do. Why I am unable to just be a happy-go-lucky, glass-half-full kind of guy? I'm not totally sure I was ever able to be that before The Incident, but the fact is, I have a severely disabled lad, and it makes life very, very hard. Those that are in this world? They get it. Those that are not? They try. Some get it a little. Most do not.

BTW, I am a glass-half-full kind of guy if you want to get technical. I just think that what is IN the glass tastes like shit. (Not my joke...I believe I heard that from one Artie Lang at some point.)

Now my mother? She amazes me. She really does. I've mentioned it here before, but only briefly, but I will say it again for those that may have missed it. She was diagnosed a few years back with a terminal illness. Rocked us all pretty hard. And you would think it would have rocked my Mom most of all.

To say instead she BECAME a rock, steadfast and determined, is the Galactic Understatement of the Decade. I've really never seen someone just give a hearty 'Fuck You' to what physician's told her and do it her way, and THRIVE. Radically changed her diet, and radically changed her outlook. Opened up her mind to ways of thinking I'd never thought possible, made volunteering a major aspect of her life, and Faith became a focal point for pretty much everything in her day to day.

She had not just gone past her Prognosis Point, she is thoroughly enjoying her life past her Prognosis Point. My opinion? The Prognosis Point is irrelevant now. She has as many years left as she chooses to have, and I believe that utterly. Can't explain WHY I do. I just do.

What a hurricane, that one, too. I mentioned that my sister had a big-time medical scare, right? More than just a scare, she fuggin' died, if you want to get technical. FIVE TIMES. She had a Ventricle Fibrillation. It was sheer luck (though many devout would say God's grace) that she happened to be living with someone at the time. This elderly woman co-habitant happened to find her and called 911. The EMT wunderkind did the shock pad whammy jammy on my sister, took her to the hospital, but she coded an additional 4 times during the whole process of transport and while at the hospital.

Five times. FIVE.

And yet, after that AND a pretty nasty few blasts of seizures, some memory issues and getting a defibrillator installed on her ticker, she walked out of the hospital on her own power around a week or so later on her birthday. Un-fuggin-believable, right?

My Mom lives in Arkansas. I live in Ohio. My sister lives in Baltimore. Because of circumstances, I was waiting for some folks to return to town to watch Bennett and would have gone to Baltimore on the weekend. That never materialized, because my sister's recovery was faster than anticipated, and so my Mom was actually on her way back by the time I would have gone out.

I had spoken to my Mom daily, several times a day, during all of this. And of course she sounded like she'd eaten gravel for breakfast and nails for lunch. Truth is she'd barely eaten at all. How can you when you spend most of your time at the bedside of your daughter wondering if she is going to live or die? Most of the readers of this blog? We've all been there....THAT is a feeling all of us have some idea about. It is one of the things I can honestly say to my Mom...'Yeah, I know how that feels.'

Not to mention the horrifying enigma of seizures. Oh how they fucking suck and how much do I hate them? Can't even tell you.

I mentioned the locations of the three of us because believe it or not it's relevant. It is easier to drive through Ohio to get to Baltimore from Arkansas, and back. So on the way back (not on the way TO, they were going Millennium Falcon speed trying to get there) my Mom stopped by to see us and the boys.

I'd be lying if I didn't tell you I expected to see my Mom looking like the Crypt Keeper. After what she had just been through? That's what I was expecting. She was about as far from that as you might imagine. She was monumentally vibrant, full of intense energy, much more than I had anticipated. She looked healthy and sounded great.

Now, could some of that have been for my benefit ('And the Oscar goes to...')? Maybe...but a lot of that you cannot fake, period. Not to these detail-oriented eyes. These VERY SAME eyes, I should remind you, that picked up a subtle tilt to Bennett's left eye MONTHS before he was ever diagnosed with a tumor or even had a seizure of any kind on the left side of his head, and every person in my life told me I was nuts. I have video evidence of that fact to back it up.

She looked and sounded fantastic. FANTASTIC. Even after the week of sheer Hell she had just walked through as her daughter's champion. I was amazed by that. I really was. Still am.

I wish I had 1/100th of her strength. I could do a lot with that.

But I block a lot of it out. It's my own fault. She uses Faith as a foundation, and I force Faith away as fast and as hard as I can, I am so consumed by anger and rage. Still. After all this time. It goes away a little, sometimes. When Bennett seems to be on an upswing, and then as soon as I think I have the makings of a bridge built, it comes crashing down when Bennett has his own downward spiral.

I don't know how to build a bridge that doesn't have Bennett Blocks in it, though clearly that is what has to happen. But I haven't figured out how yet.

He...saturates my life. In every possible way. And reader, don't take this the wrong way, I love the boy, I really do. That sounds horrifically negative to describe it that way, but when he is kicking the shit out of me after I am doing all the positive things I have been taught to do in order to manage his problem behaviors...all my PTSD wells up inside me and all I see are flashes of a childhood gone horribly wrong. I have to choke down any kind of reaction to the kid to get through whatever is happening as best as I can as my heart races and my pulse quickens and my hands start shaking.

Then, maybe after he calms down a little, if I can go find some place to be by myself and weep, I count myself lucky. I can release a little of the pressure that way. I have to chew, actually CHEW, a couple of Xanax, to get the symptoms to abate, that is how the GABA receptors in my brain have adapted to the drug, which I have simply taken for too long. I'm betting a single droplet of cannabis oil would be far, far better for my health overall and calm the symptoms. It simply is not legal here in Ohio.

But other drugs with far worse side affects? They all are legal. Bullshit. Sorry....tangent. I do that.

I don't know...I had the good fortune of going to the wedding of my good friend Mark a couple of weeks ago. I've talked about him here before. It was a great wedding, really well put together. And it was the very first second wedding I had been to of one of my friends. It had a different slant to it. Ashoken Farewell as the entrance processional? Genius move.

At the reception, many folk I had not seen in years had similar comments to make to me 'I don't know how you do it.' This was in relation to raising Bennett and the peaks and valleys that come along with it. And the truthful answer I gave was, there really wasn't anything to it. No magical potion, no mysterious incantation...we just get by the best that we can.

And sometimes not even all that good. I think we had an argument on the drive up there to Cleveland, and I know I've said it before, I'd never nominate myself for any Father of the Year awards, or Husband. This life if hard. Damn hard. Sometimes I am not sure that it is working at all.

But what is the alternative? I ask myself that question a lot. I guess there are a lot of them, none seem to be better than what we HAVE. That's what usually keeps my head in the game. At least a little.

There was a very peculiar series of circumstances that led me to writing this post. I started writing it after a comment left by SingleDad. A blogger whom I have a lot of deep respect, admiration and admittedly, an intense man-crush that rivals the one I have for Russell Crowe.

His comment 'I never read your shit. So, it's been two and a half months, wtf? Get off your ass, it's time for another post.', which of course I printed and hung up in the SingleDad shrine, next to the notes I have on how I wish I had a blog as well-organized and concise. My Tags and stuff are so all over the place I just need to dump them all and then figure out how the Hell I am actually supposed to use them. But the comment resulted in prompting me to get up off said ass and write. Didn't take me long to start a post either. The man has some pull.

But I was looking at my blog and thinking...JESUS. Two and a half months. Again. Wallowing in this hole of junk. Again. Back to this same place. Again. Rinse, lather, repeat. Again. I have become such a master at running away from my problem, never facing them head-on. Never taking the bull by the balls and actually making this all work.

This has been my self-perception about Me and my Relationship to Life in general for a long time. Most of the time, I tend to view myself as running away from it, rather than actively participating in it. Perhaps that is part of the problem. That PTSD reaction I described above? It can often move outward, like an energy wave, and consume lots of things around me. I don't even recognize the symptoms for weeks, until suddenly I do. When I am reminded by a person or a thing, a nudge of sorts. I am then shaken from whatever stupor I am in and realize...'Oh my God...I shut off again.'

Fight or flight...part of the human condition. And I learned early to defend myself I had to switch off certain parts of my inner workings. But there is tremendous cost. As a kid, it was constant flight, flight, flight, until I was able to fight. As an adult, it is constant flight, flight, flight...but this is my son we are talking about...I often wonder if I feel a sense of hopelessness because I know I can NEVER fight, that I must always choose the flight option.

Or...not? What if I have that all wrong?

Because what if what I actually needed here was a reminder that I have to look at it with keener vision?

This is not about me reaching any kind of point where I must learn to fight against Bennett. It is about the things I need to do in order to continue to fight FOR Bennett. Advocating for his needs. Though I must admit, I don't really know how to BE an advocate. But maybe I don't have to know how...maybe the act of doing this...writing about him, about us, our journey, is one part of it, and the rest I can learn as I go.

This was a point brought to my attention by yet another very peculiar coincidence involving SingleDad, if you want to call it a coincidence, in a video interview series he published on his own blog. In the third section, he mentions something I said (kinda sorta) and it involves, you guessed it, running away. I found it super crazy ironically weird. Since it has been so heavily keyed in to what has been on my mind of late.

In the video, a bit later, he talks about advocating, and it just got me to wondering if that was something that I do enough of for Bennett. Or even if it was something I was capable of doing. I just started thinking about it in ways I hadn't before.

I'm not suggesting to you that The Path of Advocacy is my path. I mean other than on a personal level when Bennett needs me to step up for him alone. Maybe it is maybe it isn't. Maybe I do it in some ways already and don't credit myself enough for it. Maybe I don't. The point here is that I feel I need to DO more than what I do, clearly. Actions need to occur that are not happening. If it as simple as writing here to keep myself centered, so be it, though I suspect more is needed. If I want to achieve any kind of new level of self-awareness, I have to push past some things.

See, Bennett is no longer the real problem here...I think the problem, truthfully, is me. I used to say that I suspected I would be the greatest enemy in all this. I think I understand why now. Bennett is a constant, a fixed element in our lives that is not going to change or go away. Well, at least HOPEFULLY not. (Knock wood.) What happened to Bennett happened, and it can't be undone. He has multiple disabilities, will always have them, and that is that. I do not have the power to change who he is.

All I have the power to do is change WHO I AM. To a degree. Can I stop the panic attacks? Not entirely. But I can try to manage the stress certainly WAY better than how I am doing it these days.

Certain things started to come into clearer focus for me recently. Take my Mom's illness for example. She isn't fighting the disease anymore. She's done with that. She's got it. She knows she has it, and there isn't a fucking thing in the world she can do to change that simple fact.

So she chose to fight it, by NOT fighting it. She went all Bruce Lee and shit and took the 'Be Water' approach...and it WORKED. Pretty amazing when you think about it. And philosophically sound, whether you believe in a higher power or don't believe in a higher power.

And not to put too fine a point on it, that is exactly what I am failing to do. Failing to let these things flow around me as easily as they should. And I have no doubt that I could probably go back and find a post or two where I touched on this very subject before, and still did not learn the lesson, still did not have the information STICK as it needed to.

This is the part of it that can be frustrating, not just about living through your struggles, I'm talking about writing about them. The writing part has its good elements and bad. You have a chronicled journey, such as it is, and that can be great to go back and look at (and some times it can be invaluable as a tool for what happened when). But on the other hand, you can look back, even at diaries you wrote in at age 16 and say 'Holy! I have been doing the same stupid shit for three decades!!!'

So where does that leave me now? Where do I go from here?

I don't know. If my track record holds up I most likely will do very little, and continue to push a boulder up a cliff. But that's my shitty attitude. And that's what needs to get kicked right out the door. I know it needs to...just having a hard time letting go of it.

I'd be lying if I said I have a plan. I do not. Days go by. I try to get through them as best I can. I don't like the way that sounds though. I need to get to a place where I can write a different sentence. A sentence like 'I make the most of every day that I have.'

But how to actually GET to that sentence? That's the part I haven't seemed to figure out yet. If I do, you'll be the first to know. Well, I will. But then I'll pass it along. Maybe. In two and a half months.



  1. I miss your posts a great deal. They always give me a better insight fo myself and I think in writing, you are helping yourself.

    1. Hopefully I didn't cross any lines. You know I get a little weird when I write about, well...'it'. Hope it was alright. well, guess I should have asked then first, huh? Duh...

      I do need to get past my tendency to be so redundant when I write. I could shorten these things up a ton. Part of it is I leave and come back so often to them I can't stay on the thought train.

  2. Last time I fucking leave a comment. See what happens?

    1. Noooooooooooooooooooooooooo!!!!!!!!!!!!!

  3. Glad to see your post! My Sam seems to have many of the same problem behaviors as Bennett - I can identify with how tough that is to deal with. Negative or positive, I enjoy reading what you have to say!

    1. Thanks Emma. What kinds of things do you do to help Sam with his behaviors?

  4. Hello Ken, it's been a long (long) time since we traded words.

    I saw your update on facebook sharing this blog post, and I found myself in bed at 2am with my very small smartphone reading this post. To me this is a long post, when I first look at it and I see so many words, I have to say I'm devolved with current age, and I tend to pass on post where I have to scroll through the screen several time on order to read them.

    But this is one of your posts, and I "knew" you before Carter was born, and before Bennett was born, and I've been following you through it all. I read it all, in the dark, very fast, and I went back to catch up on the previous two that I had missed.

    You know there are things I can empathize with (if you remember me at all, that is), because of my screwed up health, and the medication, and all of that. Still I love the way you string it all together into a marvelous post. That is something I cannot do.

    Many things could be commented on, spoken about, traded opinions over, etc. but in the end 99% of all that would be everything that you already know, one way or another.

    All I can say is:
    Thank you very much for all your very honest, open and true, tale of what it is like in the life of someone that doesn't have a perfect life, and doesn't feel the need to lie about it. You should find some solace in your blog entries, because you do them beautifully.

    All the best to you, Jen, Carter, Bennett, your mother and your sister.

    Telmo (aka Tempus Fugits)

    1. Telmo! Holy shit dude...been a long time man. Good to hear from you. Thanks for stopping by old friend.

  5. Glad to see you back! I get it about trying to change who you are and the attitude you have about life. I have been struggling with that quite a bit myself lately. Also, don't try to shorten up your posts or modify your writing style. It wouldn't be you without it :)

    1. I don't know if I CAN shorten it. I keep trying and failing. I'll keep trying though. And probably failing. But in this case maybe it isn't so bad.

  6. Good post. You do better self-therapy than anyone I know.

    1. I've become good at a lot of self-stuff over the years.


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