Saturday, December 30, 2017
Christmas is over.
That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a temporary situation that was the end result of a particularly difficult rampage from Bennett, my youngest boy who has Autism. I got the tree up-righted, though it does not look at all like it did when it was first erected. That's OK. As soon as I get a free hour or two where Bennett isn’t here I can take the tree down. I know, I’m supposed to still be full of holiday cheer. Typically though I have holiday anxiety, but let’s save that post for some other time.
This was for me an ordinary Christmas, defined by the new average. The kids got a lot of cool stuff, I had little idea what was in the packages as they opened them. There weren’t any gifts exchanged between my wife and I. There was a gift that she bought for me at the request of my oldest son Carter. A LEGO set that he told her I did not have. I had it. So she’s going to take it back to the store and I ordered myself a lumbar support for my car and a lumbar pillow for my bed. As has become our routine, we did not celebrate our anniversary which occurs two days after Christmas. Nor did we acknowledge it to one another.
Christmas was a Monday. The kids were happy. Bennett was balanced and felt no frustration on Christmas Day and did not feel any need to express that frustration physically. That was the only gift I needed or wanted. For him. For me. For anyone.
My Mom sent me an extremely sweet Christmas card, with some money in it. I wrote a mini-novel on a card that I had planned to send to her and Ken. I didn't send it. I lost my Christmas balls. I wrote some things from the heart that I've always wanted to tell her, and I waffled too long. So I plan to do it here. Not today though. I want more time for that one. The cash gift was awesome... it enabled me to upgrade some art supplies. The most exciting of which are, wait for it...yes, pencils.
You need to know something. It's a deep dark secret about my art I have never shared before. I’ve been using cheap shit pencils, lead holders and mechanical pencils since, well...forever, and I've always wanted to go “pro”. To use what REAL artists use.
I'm about to.
A year or so ago, I had a golden opportunity presented to me by a friend of mine named Steve. I love the guy. That's him in the pic above. Interesting tidbit, Steve and my Mom have dined together. It was a long time ago, but they had a Thanksgiving dinner together back in 2006. This was back when I had a shitload of hope, all of it related to a positive future. Forward in time a decade found me hopeless, drifting, not knowing where I was supposed to go, who I was supposed to be. Steve offered me a chance to draw a page in his Thing Art Book. I said yes, and failed to deliver it.
Excuses? I had a few. That's all they were. I failed him. And myself. Remember the fear I mentioned a couple of posts back? It's paralyzed me in many ways. That's why the transformations I attempt now are so critical for me. I must overcome. I have to climb the mountains ahead. For reasons unknown to me (and you, now, funny how that shit works huh?) I have turned a corner within myself. That's why I have been drawing again. I have to. I need to. I WANT TO. It fills me with joy. Joy. And I haven't felt it in so long I can't tell you how much this simple thing matters.
Of course, not hating all my own work would be MORE joyful...but eh...the tortured mind of artists. Welcome to an all-new double-bladed sword.
Karma is important to me. Or it is becoming so in my life. I asked Steve if I could draw something for him, and I did. An alien xenomorph. It was a quick sketch, something I want to refine for him. It only begins to start down a path of feeling like I have made good for all the ways he has offered a branch toward helping me get a leg up in a career in pure art that I have rejected. I will get there.
I've been exploring mantras. Call it pre-meditative meditation. And something Ghandi once said about mantra has followed me over these past few weeks, and I get tears in my eyes as I feel his words each time I read them or think about them.
"The mantra becomes one's staff of life, and carries one through every ordeal. It is no empty repetition. For each repetition has a new meaning, carrying you nearer and nearer to God.”
Art is a form of meditation for me. Buying new supplies, especially supplies that are high quality, is like buying a very nice accessory for meditation.
I've ordered three rOtring products. A lot of folks consider this company's stuff the Mercedes of drawing utensils. I ordered a pair of 2mm lead holders and a .5mm mechanical pencil. I was going to try their very latest product entries for all three of my needs, and would have spent the money but from all the reviews indicate that the newer products have some product design issues to fix. Understand...we're talking about pencils costing over $50.00...EACH. When you are buying something like this, you are buying a tool to use forever. It has to be right.
Why three? I need two identical instruments that hold two different lead types at the ready when I’m sketching. One with a harder lead for basic layouts of shapes and contours, guidelines, etc., the other a softer lead that leaves more graphite on the paper and allows for a more lyrical stroke. I suppose I should say graphite for ALL of this, since none of it is lead anymore. But hey, habits. I want these two tools to be easily distinguishable from the other. The way I’ve done it in the past, with Mister and Miss Cheapie , is with colorized duct tape or stickers on mediocre plastic frames that I eventually crack with pressure from my thumb. Now I will tell them apart by the all-metal construction in chromed silver and matte-finish black.
I love the Internet. I was able to research all kinds of crap about the different types of pencils available, watch people use them...it was a wonderful way to spend the afternoon interspersed with some time with Bennett, who is struggling BIG TIME with boredom during the two weeks he is off from “school”.
The Amazon order I placed was thick with these pencils, finished off with a .5mm mechanical, replacing the flimsy plastic ones I have been picking up from various drawers in my house. It is amazing the cheap shit we have around here. The rest of the order contains some high-end graphite, a sketchbook I’m stoked about with a great flex cover, some microfiber cloth to keep my glasses clean all the time and a very highly reviewed lead pointer. Cause...you need a sharp point, right?
Usually we lead holder types who hate using wooden pencils have these wacky rotating pencil lead sharpeners, called “pointers”, that we’ve spent years mastering control over. That is an art form all by itself. The right amount of lead sticking out, gripping the pointer and the holder just right, NOT TOO TIGHT, rotating at JUST THE RIGHT SPEED, for the right amount of time...
It’s mentally exhausting to recall it. How many frustrating, dreary nights did I hear the dull CRACK of my lead snapping in half, like the sickening sound of a broken fibula? Too many.
This Mitsubishi lead pointer is very different. Streamlined, cool, hip, almost sexy. I may want to ask it to sleep with me. And from what I’ve read and watched? The last lead pointer I am ever going to buy. Coincidentally, most of the rOtring holders don’t fit into standard rotary lead pointers...Sadly, I probably would fit just fine. So there's that. This one has me completely covered.
Oh, one other thing. I ordered a Pentel Pocket Brush. Yeah, gonna toss some ink around a bit in 2018. Why not? I used to ink with brushes and crow quills and all kinds of crap. If I had a decent skill I want to see how much I can bone it up. (Hee hee...BONE.) Which reminds me, I forgot to order some fine point pens, a nice Uni starter set before I leap back into Rapidographs if that's the way I decide to go. I better get on that.
Funny thing is, all this is traditional goodies for traditional art-making. And with any luck? By the end of 2018 I don’t wanna be using any of it as much as I wanna be using a stylus and a digital tablet.
2018? You and I have a lot of shit to do together my friend...get ready.
Tuesday, December 19, 2017
Eight days ago I up and decided to go for a walk.
Why is this important? Because I haven’t done it in months. A lot of months. Terribly pathetic, but I don’t hide from the truth. Another truth is that I’ve avoided walking because I’ve allowed fear to paralyze me. Not just with exercise. In Life.
I’ve touched on this briefly in this semi-resurgence of writing, and will more. This immobility has fostered what I refer to in therapy as a “Groundhog Day Effect”. I've no idea if this is a real thing, or if it’s just a name I’ve chosen to describe something that someone else has already dissected in a different way. Bottom line is that I've started to see recurring themes, behaviors, patterns, tendencies...all of which lead to a seriously repetitive cycle of living that I've been trying to break free of.
Fear sucks. I hate its guts. Assuming fear has guts. I hope it does. I hate wasting my hate on nuthin. It’s...wasteful.
With the walking, you’ll love this crazy-crazy, I was afraid of the pain I would start to feel when I started going, whether it would linger on with the pain I have every day. Crazy-crazy, yes?
Why not just DO IT and see what happens? See that’s what? I’m guessing this is how all of you normal people think. Not people like me. I circle the drain, over analyze, think way too much about shit. And I despise every minute of it.
See, I have this deep, passionate longing for all of that noise to melt away so I could just BE.
For as long as I can remember it’s all I’ve ever wanted. To BE. For as long as I’ve been writing or journaling, it’s a recurring theme in every chunk of time I've re-read. This book I found while I was going through personal mementos...all old journal pages gathered together. So many other pages in the computer, others still lost to time, unsalvageable from wrecked hard drives and corrupted floppies.
I doubt there are very many people reading this who understand what it feels like to never be able to turn off your brain. To be plagued by second guessing, regret, too much thought.
I am THAT guy. THAT guy that you cringe for. THAT guy who worries about what to say to someone at a party. I’m THAT guy who has made notes to myself before certain functions and secretly kept them in my pocket to help me remember things I should talk about. I’m THAT guy who has a brilliant comeback line to a verbal jab that was just sent my way, but I can’t get it out like I want so I say something stupid and spend the next two days thinking about WHAT I WISHED I COULD HAVE SAID.
Every single day, as I navigate any minefield of social interaction, and it’s been like this every day that I can remember, I’ve felt separated from everything and everyone because of this...whatever you call it.
There have been exceptions.
One exception is whenever I’ve successfully consumed THC in the right dose, without overdoing it. During these periods my mind finds the right peace and affords me the ability to actually CTFO. A fantastic side effect is that it also reduces the amount of physical pain I feel every day. Over the late summer/early fall I was able to get some MMJ and use it as real medicine for a period of weeks.
This extended amount of time was what helped lead me to right here, right now. Isn’t that interesting? While I had it, I was more productive, more engaging, more inspired, more social...and on and on and on. I was also able to quit Oxycodone, for good. I’d been taking that evil shit FOR YEARS for my chronic pain. Now? I don’t.
Only problem is that Ohio is not a legalized MJ state, I don’t have the ability to get what I got regularly, and it’s been a couple of months now. The pain isn’t managed, my mind is a war zone and it’s the same fight inside my head it’s always been.
At least I made progress, and I haven’t lost any ground. Yet. For this? GRATITUDE.
The other exception has been during periods of my life where I’ve been surrounded by the right people. These specific types of personalities have a way of quieting my internal storm to a degree where I’ve experienced some sensation of belonging, even contentment. It’s rare, but there. These fine folks who have reached in and scooped out the very best parts of me? Well, I’ve generally figured out a way to shit all over it somehow.
As for my present daily life, I spend most of my time as a caregiver or alone. I have no reality outside of those two scenarios. While there are people who can and do cut through the noise, it’s different. That’s harder to explain, and would require a longer, different writing.
Suffice it to say that the people who have the best success are those that have a synergy that merges with my neurotic Virgoness. Yeah, I kindasorta believe in that crap, though I do not lay the blame solely at the foot of The Virgin. OK I do think it holds a LOT of insight. But then again? Crazy-crazy, remember? There are some eye-opening things about Astrology that freak me right the Hell Out though. About myself, people in my life...something has to be there. I dunno...maybe something about the way gravitational or magnetic fields affect shit when people are conceived then born.
But what do I know?
All I know with certainty is that I took a walk on the 11th. I was in agony on my ride home from Bennett’s school and I went inside and something inside my head cut through the static and said GO. Don't think. GO.
And I did. The fear, the hesitation, wasn’t there.
As I was walking it hurt, more than I thought it was going to. Not just in my SI joint and piriformis muscle, but I noticed a terrible tightness and pain in my neck. As I walked further and faster I started to realize I could “hear” my bones. Crunching, crunching. And it was difficult to move my head to the left or to the right.
I looked down at my hands. They were tightly clenched into fists.
I was doing this to myself. I was rigidly clenching everything. I couldn’t relax anything. My arms weren’t moving well at all. It was so...crazy-crazy? And it felt awful. Every step was like walking through a glass door.
I had to really focus on loosening my upper body, my arms, my chest, my head...breathe, stay loose. I would start to feel better as I took more steps. I couldn’t maintain it. Just as I would begin to think “I got this motherfuckers!!!” I would realize that everything was tight again. The effort required was something I’ve never experienced. I started to think about how this was a mirror pointed at my life, a reflection of how I struggle to find peace and then it slips away.
Before I knew it I started to cry. I couldn’t believe it.
Not a balls out weep job, but tears were coming out of my eyes. It was a walk around my neighborhood! Can I actually be THIS fucked up?
That’s how the rest of the walk went, a fight between trying to uncork my body and the tendency to trip myself up with all of the stress I’m carrying around. Soon I returned to the house. The trip was around a mile and a half.
Physically I felt fine. Mentally? Wiped.
I had a lot to process, and process I did. But walk I did too. A few more times during the week. Also started moving a few things around in the house, trying to get some things arranged for some projects I have been putting off. All week I felt different. Still do. Can't quite explain what it is. Or even why. I'm still depressed. But I'm not. It is the crazy-craziest thing.
So...what have we learned today, kids?
- When I look at my body of work over the span of my life there is one thing I know to be true. I’m always trying. Successful or not, effort is very important to me. And I’ve given it. Those times when I was the least content were those times when I gave the least effort.
- I've got to learn some things about how to de-stress. The tensions that I am feeling are calling out to me to fix them. The tightness in the muscles, the spine, all over. I intend to do so.
- It is OK to be depressed and also be positive at the same time. This makes NO sense to most people who do not live with depression every day. I'm not 100% I understand it fully yet. But I've just decided FUCK IT…depression, anxiety, PTSD, they are a part of me, and always will be. But they do not have to make me SAD. One day I will explain that to you…if I can figure it out first.
- If I think I have shit figured out, I don't. That isn't how life works. Life is constantly evolving and changing and moving. And so should I.
- This tendency to over-analyze, to struggle with things internally. It doesn't have to be a bad thing. If self-evaluation and analysis are who I am...accept it. It’s been 50 years and it’s not going to change now. Use it more positively and I’ll have a better outlook overall. I believe that’s what I’m doing now.
- To be willing to expose my failures, my weaknesses, to talk about them…that is a strength of character that it is time I began giving myself more credit for. Besides, all that shit up top? Who does that? Who lays it all out and tries to work out their crap like an open book? Hmm...book...
It is now Tuesday, the 19th. I started writing this a week ago.
Since then, so many things have hurtled through my brain. Just like they always do. The noise, the chaos, it's all still there, banging away at everything that I do. I haven't let it stop me from moving forward.
The stress has got to be removed. Working on that. An old friend from Palisades named Chad has a wife named Sonya who is Yoda about Yoga…she wrote something to me a couple of weeks ago that rang with a Truth that could not be ignored. So I ignored it. Mainly because I wasn't ready to hear. She said "I can put money on that your piriformis isn’t the only place that you hold on to extreme tightness (every day of your life), it’s just the one that’s screaming the loudest".
Thankfully the message, from her and the one from my ass-cheek, is louder and clearer now. I'm looking into meditation and Yoga, though like most things I am baffled by the deluge that is the World Wide Web. I may need to take some classes in both. Us old folk have a hard time learnin new things! I'm ready now for the meditation. The Yoga? Baby baby baby steps. I need to be real careful. Let's make sure I don't injure myself here. I make sloths look fast at the present time.
On the 9th I had started an Instagram page to focus on my artwork. My goal was to do it that weekend. It was done and it's provided me with some creative focus. Good for my soul, my mind. Set a goal to learn more about the ins and outs of Social Media, crap like that. Mini goals I call them. I set em, I knock em down. Another goal was to draw something new the week after I launched that page. I did it, DESPITE the numbness and pain in my fingers. That was HUGE. On the 12th I kept an appointment for an MRI to get answers about the physical aspects of my brain and the headaches I'd been having and was able to scratch that off my list.
And of course, all week long, I got out and moved as often as I could.
Last night, I even found new resolve to integrate Bennett into one of the walks. He loved it. We even went shopping, I wanted to look for an exercise mat. Didn't find one at the store we went to, but at least we got out. We used to go on walks a lot and not very long ago, until I allowed myself to be overwhelmed by managing aspects of his care. I'm not overwhelmed by those things right now. We are in a different place together. I've been working very hard with him. But he has been working hard too. A lot.
Evolving, changing…moving. Just like Life.
Thursday, November 30, 2017
"Negative emotions like loneliness, envy, and guilt have an important role to play in a happy life; they're big, flashing signs that something needs to change."
I've got a confession of sorts, and not a lot of time left to get it out. Not this year anyway, and not in a timely enough fashion to matter. To me.
A bit of backstory in case you are reading this and don't know the skinny. In February 2009 my youngest son Bennett began having a catastrophic form of Epilepsy called Infantile Spasms. Our family went from "Normal" to "Special Needs" in the time it takes to flip a light switch. Some people don't care for the use of that word, our version of the N-Word, but I don't have much of an issue. Substitute "Typical" if it makes you feel better.
Theoretically, one could say we entered the world of Special Needs on the day he was born in 2007, we just didn't know it yet. That's theory. He had a brain tumor, and he also has a diagnosis of ASD, and since ASD doesn't have any known "cause", it's hard to say if the Chicken or the Egg came first. The when or where of the overall? I'll leave for some other time.
The point of this writing is to discuss the Epilepsy aspect of Bennett's life. Mine too, as I was the first person who bore witness to it within him. I was home watching the boys while Jen was out. Carter was watching TV, and Bennett was walking around like most toddlers do, going from thing to thing, when he stopped and started to have hiccups. Or so I first thought, until I realized there were no sounds.
He remained standing during those first mini convulsion type movements. I had no idea what they were, but there was something inside me that said "This isn't right." I grabbed my camcorder (remember those?) and I recorded some. He never fell, and seemed confused by them. So was I. We had him seen by his Pediatrician, then had an EEG, and when the technician saw his pattern she went white and sent us to the local hospital for children. We didn't get much info that day from the EEG place, though we happened to overhear the term Infantile Spasms and of COURSE we Googled it.
Doing that in 2009 is different than doing that now.
Google it today? A lot of information comes up. The screen immediately lets you know how shitty this shit is. Take a look at this screen shot when I Googled the term "Infantile Spasms".
In 2009, the one that was first on the list was the one marked by the arrow, the 2006 article called Infantile Spasms: Little Seizures, BIG Consequences. I don't know for sure, but at the time I don't remember if the entire thing was available to read unless you were a doctor. Yeah, one of those. I do recall that first part, the abstract, though. It reads:
"Infantile spasms is one of the “catastrophic childhood epilepsies” because of the difficulty in controlling seizures and the association with mental retardation. However, early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development. Thus, there is the opportunity to have an important impact in the lives of these unfortunate children and their families."
That first sentence should give you an idea of how old the article is. The impact back then was as fresh as it is today though. It was a punch in the testicles. We were scared to death for Bennett and what lay ahead for him. For all of us.
Somehow I need to get those camcorder discs into the computer to isolate them into short movies. It would be worthwhile and educational for parents new to all of this to compare the first sets he had to those he had over the summer, which were FUCKING BRUTAL. The timing is so critical. The later clusters required him to sit and have a pillow in front of him in case his head slammed into the floor.
What a complete waste of time those months were, as we ridiculously sought treatment medically to end the seizures, all the while not knowing he had a brain tumor, as his condition was not properly assessed by the first place Bennett started receiving treatment. Eventually, by August he was at the Cleveland Clinic having a Temporal Lobectomy.
We were told to expect a lot of things following the surgery. We were given the percentages of tumor regrowth, the type of tumor was harsh and this ended up being a percentage I have never been comfortable with. He does get an MRI every year, and after each clean MRI I get on my knees. We were advised of the possibility of the seizures returning, particularly right after the surgery as this was the brain doing a sort or reboot. That night, he did have an isolated set of quick seizures, but that was the very last time I would ever them.
My knees get a lot of wear over that too.
So what's the confession?
There are a group of kids and their parents…I call them The Class. Kind of like how you refer to a graduating class. These kids are mostly surgery kids, kids who had a procedure to attack the IS Beast around the same time Bennett did. Parents who I got to know during that spring and summer, who at one point or another chased the same dream we did of achieving freedom from it. They even may have had that freedom for a short time, or longer.
But then? Gone. To have that snatched away is...unimaginable to me. I don't know, because I never lived it, if it is worse than those first days of diagnosis. I can only guess that it must be.
The confession is that feel very strange that all of your kids are having seizures and Bennett isn’t. I know Bennett has his own issues that are unique to him and that this is some version of survivor's syndrome. This is usually sub-categorized symptomatically under PTSD and this could be a part of my overall diagnosis, but the fact is that I feel it very strongly.
I've looked around for places where other parents might experience something like this so I could talk with them about it, work it out, get feedback, but I haven't found what I was looking for. I have found resources for Special Needs parents feeling guilt over their child LIVING when other parent's children did not remain alive, but this is a slightly different take.
Sometimes, I have withdrawn from these parents, and I mean totally unplugged from their lives. It only served to intensify my shame. During Epilepsy Awareness Month, I shrink away from doing anything to call attention to it because I feel like a poser. How can I possibly champion awareness of Epilepsy if Bennett isn't suffering from seizures anymore?
This isn't rational, by the way. I know this. I'm bringing it to light here not to justify, but to explain and to elicit change within myself. The quote up and the top wasn't included to be cute. There is a poignancy to it.
This is part of the reason why I needed to start publishing blogs again. With regularity. With intent. I need to get these things out in the open. And admitting this, and taking steps to do something about it, is important to the journey. It is critical to be raw, and real, as often as I can, even though it makes me uncomfortable. I have never been a precision instrument. I have to be blunt, more visceral, to be an effective tool. Not doing this was eating away at me like a walking corpse.
What happens now? Where do I go from here?
While I'm open to suggestions, especially if you have any experience in the matter, this is what I am supposed to figure out. According to everything I have been able to learn about these feelings. It all boils down to more self-evaluation, healing and taking the right steps. Holy CRAP how much self-eval does a guy need to do in a lifetime?
I'm guessing a lifetime's worth, if you want your lifetime to mean anything.
Wednesday, November 29, 2017
So. Over the past couple of years I've been writing a blog. You just haven’t read it. Not because you didn’t want to, because you might have have liked that. I gotta admit though, that some of the subject matter was a little dark. For me to say that, you know it was.
The reason you never read this super-secret decoder ring access blog was because I stopped publishing my thoughts. Good thing? Bad thing? I dunno. I’m not sure it’s one way or the other. It’s just how it went down.
Occasionally, sometimes, I would poke my head up, toss something into the Blogiverse and share a dopey musing, mostly drivel about how this sucked and that sucked more, all the while talking myself into all the reasons why it wasn’t supposed to suck that much. I was lost about this or that and why does this life suck shit so bad and poop this and poop that and my back hurts.
Wow...what a FANTASTIC read those blogs were getting to be. Though I did sort of like the poop stuff. It's the little boy in me. Poop and farts are still funny. I may be fifty but that stuff still makes me laugh. Unless I'm cleaning it up. Then it's not so funny.
But I went back and read a lot of my published blogs over the last couple of years. I wasn’t a good blogger. Not just because of the lack of frequency. I wasn’t a nurturing, selfless blogger, offering up a Slice of Life that felt inspiring. Not that all blogs have to be that. But they should at least be interesting. And many weren't even that. They were...hollow somehow, like one of those really weird malted milk balls that you get from time to time. You toss it in your mouth joyfully, bite down and suddenly DAFUQ??? Something is WAY wrong with it. The inside is just...FREAKING WEIRD. Gone but not gone.
There, but...not there.
That was me. My sense of humor was getting swallowed up by spending too much time feeling sorry for myself. And the good, strong triples I would sometimes leg out, even the occasional dinger, were not showing up often enough to sustain me. I certainly don't expect that they would sustain anyone else.
I lost my way, hard.
Frankly the blog, but more importantly my Life on the Internet, was becoming a one way street. Offering my friends, and you, scraps, while everyone continued to be there as a lifeline.
The journey to reach that realization, and then to embrace it, required time, introspection, a LOT of therapy and writing with no fear of repercussion.
But there I was. Ending one journey, starting another. And now, another.
So why now? Why decide to stop writing blogs to myself and instead start publishing? Because blogging, for me, flushes a lot of the fudgy stuff out my head. There's that poopy stuff again.
Opening a hole in my skull and letting what’s inside of me to bleed out onto the page has been second only to therapy on the list of the most important things I’ve ever done for strengthening my mental health. Through it I can continue to carve away at the marble and reveal the person I am meant to be. Not the person anyone else thinks I should be. When I write something that is clear, concise, funny, insightful...I feel complete, spiritual. I feel cleared out...refreshed even.
As Anthony Bourdain, my new hero, once joked about getting his Aura renewed in a ritual before visiting some cocoa plants he owned near Peru. “My Aura is now cleaner than Gwyneth Paltrow’s colon after a 3-month juice cleanse.”
Yeah...what he said.
Monday, November 27, 2017
I was hoping for a slightly better piece of writing to return with, but screw it. I gotta just get started. I've had so many false starts I was starting to feel like OT Laremy Tunsil of the Miami Dolphins. So I gotta just jump right in.
You're familiar with the Memories section of the backend of your Facebook page? Of course you are, you are Social Media savvy. For those few dumbasses out there that aren't, like me, it’s the doohickey that tempts you like a sly ex-lover to share a post from your world wide past.
Could be an embarrassing commentary you wrote while incredibly stoned, or a heartwarming photo of your 4-year old, before he became a teenager and all that angst and anger started spurting forth. Or better, let’s celebrate the date you became Facebook friends with a Facebook friend you don’t even talk to.
Still, it has its place, if only to remind you of things you otherwise may have forgotten. Today mine showed me my disgusting feet from one year ago. Swollen, bleeding, sore...soaking in a tub of warm water after a very long day of moving boxes from one house to another.
Ironically, I saw it while sitting in the exact same place, with a heating pad on my lower back and hip and a frozen gel pack on my abdomen and neck. This caused by 2 days of hauling around bins, books, and boxes in an effort to organize and consolidate some of what is essentially mounds of half-crap, half-crap I want. I have to separate the wheat from the chaff to minimize the bulk so that I am not being crushed to death by the psychological weight of it.
The crazy thing is that these crap mountains have followed me since 2013. I have moved them four times. I won’t move them a fifth. And I never know when a fifth may be coming. So stuff's gotta go. And I’m on my own with this task.
While a lot of it is product samples from my dead career, even more is just accumulated Shitola that should have been thrown out a lifetime ago. Am I a hoarder? It is a worthy question. But the real question is, why haven't I chucked it by now?
Take a sip from a flask, channel a young Bill Murray as Dr. Peter Venkman and say with a smile...."I don’t know."
Exhaustion. Depression. Addiction. Despair. Anxiety. Loss of hope. Posturing between two people who can’t learn how to navigate the simplest of issues in order to make forward progress. All of the above? Things have moved sideways here for a long time. Not forward. I have a whole different post about how I've lived the same day over and over for the past 7 years. And it has some good Bill Murray references too.
But that was then. This is now. Somehow, I don’t know how, I just decided that I didn’t want to walk sideways anymore. I didn't want to wake up and relive another day like the day before.
That’s not entirely true. The part about not knowing. I do know. Three sustained years of therapy. What a difference a real commitment to mental health makes. I continue to make drastic change in myself. Meaningful change. I experience life in ways I never dreamed possible. I’m not the answer man by a long shot. But I am asking lots of questions. And I do find answers.
Speaking of...my abdomen is in complete distress. It’s like that whenever I do anything even lightly physical. It swells up, becomes incredibly painful, tight. My quest for answers regarding why leads me back to late 2016 and, coincidence or not, the time that photo was taken. It was 6-7 months after my surgery when I started packing tons of stuff to move into the house I’m living in right now.
I did not want to purchase a home at that time, being so close to my surgery, issues with Bennett that he usually has in the Fall, not being ready, wanting a lot of time to find the right place...and had several discussions regarding my desire to hold off until the following Spring to start looking. But a defining characteristic of my marriage is that much of the time what I want is not considered relevant.
That was end of September when pre-packing started, because a Buy was imminent and I knew it. It occurred in October, of a house that had around 3 of the 10 things on the list of what we were supposed to be hunting for on it. By end of November with all of the moving I thought I was going to drop, and my body was not handling it well. Mid-section swollen, feet swollen, back effed up. Was moving stuff over every day in my 4-Runner.
Fast forward a year.
Why I was alone this Thanksgiving weekend? I could have gone with my wife and kids 2 hours north instead of staying here. But I stayed. The fact is I was originally supposed to go see my Mom, who I haven’t seen in years. We had some financial issues...related to buying this house (oh the ironies continue). So I could not afford to go. But then consider these things.
I started having bad headaches. Saw a doctor, have some scans set up for early December, but it’s a good thing I didn’t fly. Changes in pressure? Not a good idea. Coincidentally my Mom's husband ended up in the hospital on T-Day. He’s OK, but they needed time to deal with that.
So I was here, and I didn’t go with the crew to my SIL's house. With no worries over Bennett getting into anything, I was able to spread stuff out and get a ton sorted. Wheat from chaff. Made a nice dent in the garage. There was a time when I would have played my PS4 the whole time. I don’t even recognize that person anymore.
I chomped down hard on the project, and was in pain for most of it. But I didn’t care.
Everything is connected. I never really allowed myself to see that before. I am starting not only to see it now, but to believe it.
Seeing that photo reminded me of my anger over the move and what it did to me sure, but it was pushed aside easily and settled more onto the positives that came from doing it, things I discovered during, thoughts that gained even more focus. All connected to my discontent over where my life has been, where I want it to be, what I need to do to get it there.
These link to my desire for a brighter future and strangely re-connected me to today, the day my Father passed away 11 years ago at the age of 70. I don't grieve this day the way most people might. We didn't have that kind of relationship. He left when I was five, I saw him sporadically from 5-10. He didn't want much to do with his kids. That was just who he was.
I last saw him when I was ten years old. And didn't speak to him or see him ever again. I have no regrets. I think about him from time to time, but more so how it relates to how I might be as a father, or how my health might be affected by who he was. I happened to find a photo of his gravestone over this weekend. Coincidence? I doubt it.
It was a message. A message that I am on the path I need to be walking. I'm 50 now, and I want more years than he had. And I want those years to be quality. Maybe some adventure, some excitement. I’m no Jedi...so I do crave these things, more often every day.
All I have to do to get there is keep chipping away at these mountains so that they don't stand in my way anymore.
Wednesday, September 20, 2017
Another term for balloon is bad breath holder.
I'd like to thank everybody who took a minute to send me a note yesterday, either through Facebook, Instagram, e-mail, text and the rest. Thanks for thinking of me. To those of you who called, I'm sorry I didn't answer the phone. That happens in this Special Needs Life. This is difficult to explain to those that do not live it, easy to explain to those that do...but I was totally consumed by what was going on with Bennett. It was center stage all night and nothing could change that.
For the most part, the issues that surround my child with Special Needs don't follow a schedule. So the fact that I reached a 50th year milestone birthday? It didn't mean anything. Not really, other than "Hey, I made it...whew." The reality is...it was a Tuesday, and an unusually difficult one, for Bennett. That by extension made it an unusually difficult Tuesday for everybody else.
I think a tooth is coming in and frankly he has never been able to process pain very well. Who does?
That was the foundation. Or I think so. I can't ever say with certainty, because we can't communicate with each other on any complex level. What got the aggression boulder rolling down the mountain was a set of balloons that were here (the 50th helium birthday balloons from the photo above) when he got home from the SN facility he attends for school.
Pure joy. That's what I saw in him for around 6 minutes when he first laid eyes on them. That lad loves balloons. He grabs them and starts running through the house with them, giggling and snorting and having the time of his life. Until one popped on a ceiling fan.
It isn't like the pop of the balloon scared or upset him, or that he gets freaked by loud sounds. This is a boy who loves that kind of shit. He loves fireworks, loves police sirens, the sound of a starting pistol for a track meet. All of it. To fully understand why the popping of the balloon led to him trying (and succeeding) in destroying several other balloons, whilst using the balloon to beat things that belonged to me and himself in the face, you have to go back to his difficulty processing pain.
That includes the kind of pain when you stub your toe...but it also includes the complex stuff like guilt, shame, loss, loneliness, etc. And that list is endless it seems. I've only just begun, and it has been 8 years now, to understand what a driving force this is for him. And how difficult it is to navigate the mine field of it when we can't communicate with each other.
With that in mind, I make a lot of suppositions. They guide me. As much as guessing can. But my guess last night was that he felt bad about popping my balloon, thought I would be upset though I assured him I was not. Or he was just sad by the loss of the biggest, fattest balloon himself. Either made sense. As it kept escalating, the real issue became less about him and more about me. For the first hour, hour and a half I was handling it all very well. But then I couldn't.
I'm a human being. Though many have accused me of robotic tendencies. All the depression, the anxiety I've had building up about turning 50, where my life is and how much I don't like where it has been for years, blah blah blah...it had all been sitting in there. I used very poor judgment, not only yelled at him but after he had destroyed most of the balloons I popped the last two just to get the whole thing over with.
I shouldn't have. Should have thought of something else. Of course it made things much, much worse. By the end, I was a sobbing mess. Then, like we always do, we came to terms. We apologized to each other, I told him I loved him, he said I love you too. Though as much as it feels good to hear I know he has learned to say it as a response phrase to hearing the words "I Love You" being spoken. I'll never know how he FEELS. I can only guess. And hope.
After we made up he had a bath and then fell asleep next to me on the sofa like he does most nights, watching CNN. Not that CNN is the usual fare on TV, it isn't. I went with something 100% boring to him on this night so that he would just have a talking head and nothing that would grab his interest while he got sleepy and I rubbed his back. That was what worked for him last night. Other nights it is something else. Whatever gets it done.
THAT was the 50th birthday. No candles on a cake. No singing songs. No un-wrapping of gifts. No party. Just violence, tears and exhaustion.
Credit where credit is due section: There was an unwrapped present given to me in a kind of quick 'Let's fit this in here' scenario. That's this Life. I'm OK with it. There was a cake type dessert. Because of the behavior spikes we couldn't risk exposing it to Bennett, had to wait until he went to sleep. The other members of the household were unable to wait for him to be fully asleep and upstairs so they munched without me, thought that could have gone down differently. My Mom sent me some cash, very cool.
Important to point out my mood and overall disposition was just bad. Frankly I should have found some hole and crawled into it. Too much negative energy all around. Yet how long has it all been here? A long time. A very long time.
This is the reality of Life with Bennett. On any given day things can turn. You would expect that I would have found some kind of emotional shielding from all of this by now. That I would have more answers...have everything figured out. There are days man...days when I feel as clueless as I did when this all started eight years ago. I hate that about myself. Our lives can and should be different. This truth screams out to me.
I used to hope his aggression would cease. Now? I hope to get to a point where we can get a reduction to where he has a ratio of at least 55/45...meaning a few more good days than difficult days.
There is only one problem with getting too accustomed to re-drawing your line in the sand. You start to have a level of acceptance of a shattered world, and I'm not sure if that's OK. Though it must be since I'm suggesting it right? Besides, after a while all you have left is a bunch of sand and nothing else.
Most people call that a desert.
Thursday, November 10, 2016
Back in 2007, it was a lot easier to get your hands on Baltimore Ravens tickets when you live out of state like I do. I had a good line on a late season match-up between the Pats and the Ravens for Monday Night Football on December 3rd. The only problem? Bennett was going to be induced on December 11, and there was always a possibility than my wife would go into labor before that.
Being 7 hours away by car in Baltimore were that to happen would have put me further into the doghouse than I usually found myself.
Turned out, never had to make that choice. After experiencing some labor pains in the middle of the night on November 9, we went up to the hospital and on November 10, early in the morning I can't recall the time, Bennett was born around 5 1/2 weeks premature.
Not sure if I ever wrote about this, probably did, but his problems really began there. He was deprived of oxygen, the thing is I don't know for how long, and the staff there obviously played full CYA. The sheet only read "he had a dusky color" and that he was given "some oxygen" but it never said for how long and none of us could get any answers.
Hindsight is the only thing that tells me that it was a lot longer than anyone there ever wanted us to know. But waddya gonna do? If his encounter with the DTaP Vaccination, the onset of his Infantile Spasms, the missed diagnosis of his brain tumor and the aftermath of all that was any indicator to me, the medical community is very self-protective when it comes to the pursuit of litigation.
Most of the time, families are going to need to figure out how to navigate most shattered messes like that on their own somehow. They need to figure out where the help is and get it if they can.
I'm super bummed out today. The blog I wrote yesterday was not some old thing I put up to fill space. That actually happened on Wednesday...yesterday. My mind has been all over the place because of how...feral...Bennett can get lately. To say I'm deeply affected by it is, well, they are words that just cannot adequately express my feelings.
Later in the evening, I was standing in the kitchen and staring at the floor. I didn't even know I was doing it. I was just...I'm not sure, maybe trying to still cope with my anxiety from what happened at the restaurant parking lot. Jen had arrived back from work around 8:45, this was maybe 9:05, Bennett was almost ready to go to bed, he had been great the rest of the night, and that is not unusual, which makes it that much harder to navigate. He will Hulk out like that, and then become the most amazing, loving boy to be around.
I had been, around 2-3 weeks ago, telling Bennett about his upcoming Birthday. Getting him stoked about it. He has some understanding of it. I'm not sure exactly how much. But I always try to talk to him as if he is able to understand me.
But when Jen said to me, in the kitchen, "Bennett's birthday is tomorrow.", I began to feel tears in my eyes again. It was that kind of night, was going to be for the rest of it. But somewhere along the way, along these last couple of weeks of ups and downs, I had totally put his birthday out of my mind and forgotten it.
The tragedy is that this was not what caused me to feel like crying. It was the thought that followed. The thought that, at the very least, I was somewhat grateful that because he has such a profound disability he wouldn't have any idea what a shitty thing it is for me to have done.
The wind was cold, it helped take the sting away a little as Bennett hit me in the face a second time. We were wrestling with each other. Again. He trying to attack me in all the ways he knows how. I trying to manage each of his flailing limbs and his gnashing teeth as they sought out any of me that got too close to him.
Each time his teeth would find a target, the searing pain was a blessing in disguise in a way. It gave me a few seconds to move him closer to the car. The both of us had only just minutes before exited the restaurant where this dance of violence had begun and we had a long way left to go. Unfortunately the ferocity of this encounter resulted in a much longer process of getting where I needed him to be.
As if the car provided refuge, or safe haven. Not a chance. It provided only an arena for the sparring to continue, with less of a possibility of Bennett getting seriously hurt in a parking lot, and a smaller space in which there might be an opportunity to ease him out of this latest rage.
I have Post Traumatic Stress Disorder. Long story short. Violence toward me in other circumstances in my life leaves me vulnerable to having reactions that are severe when I experience violence toward me in my life today. It's been stacking. I take things for it, but I may have peaked. My hands shake a lot. Sleep is difficult. I fear when Bennett comes home. I gave up my career, many aspects of my life, because of Bennett's disability, and it puts my psyche in an awkward situation when it comes to learning how to cope with the idea of regularly being abused by my 9-year old disabled son.
Most of the time though? I am the one who can get him back from the ledge, ease him through it, better than anyone. Despite ALL OF THAT. Yay me. It's nothing to celebrate. It is a matter of survival mode more than anything else. For us both.
Except, tonight he wasn't easing out of it. All he wanted was to rip me to pieces.
Sometime after, when he had reached the point of exhaustion, and I had finished sobbing and cursing at God, I had a chance to consider why this incident was so different. So visceral. I wouldn't let those thoughts sink in fully until I got through the rest of it.
It was difficult to wipe the tears and snot from my face because my hands were shaking so much. I needed to walk Bennett back inside. It felt like it took forever because every movement had to be so measured, I was dizzy and I was coughing like crazy…this was a full-blown panic attack unlike any I had experienced in years. But I was going to take him back in to the restaurant. I had a bill to pay, another kid who didn't deserve to be left in there hanging like that, and I needed to make sure both kids ate. I was in no shape to cook.
This is how fucking crazy it is…he was perfectly fine to walk back in there, It was me who wasn't. I'm grateful that the staff there know me. They got everything I needed, check and all, knew I was not going to eat, and I have to be honest, I almost had to have them run my credit card like it was a phone order because I was not sure I could sign.
Why was he so Hell-bent on trying to hurt me? Because I had never tried to talk him back. I never tried to help him. I was hurt, angry, lost. I had reached an eerie emotional shut down. And all I was doing was fighting off the beast. I wasn't trying to ease the suffering of my son. And during the worst of it I was yelling. I was begging him to stop, but it was still yelling and not remaining calm.
You might say who can blame me? Well, research how to diffuse Parental Abuse, or aggression in brain damaged or kids with severe Autism, and one of the first rules is? Remain as calm as possible. I should have that printed on my underwear. Wait that…kind of didn't sound like I wanted it to.
When he first began to unravel...when we were first sitting in the restaurant, I was calm and tried to do what I always do. Cool and collected, reasoned, slow speech, talk him through, ease him, comfort him. He threw a bowl of chips at Carter, tried to reach across the table and grab him, I had to get in the middle and when I did Bennett reached under my left arm and squeezed until he broke skin.
From that moment on I retreated inside myself and then exploded with emotion when I reached my saturation point. Just like I used to when I was a kid. It was…maybe more devastating to me, that realization, than the whole 20 minutes of him slapping, kicking, scratching, pinching and biting me.
Somewhere, somehow, I need to find a reserve tank…and fast.
We haven't come close to fixing this problem. This thing that has been happening since…Fuck knows how long now…it's living in a house with an exotic animal, walking a tiger by the tail. Sometimes things are fine. Sometimes they are not fine. Lately things are escalating. The past two weeks to a degree that has me in a state of what I can only describe as…despair?
Where am I supposed to go from here? How the fuck am I going to save him? Marijuana may or may not be legal here soon, but it might not be soon enough. He needs something now.
And I have NOTHING.
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