Thursday, November 30, 2017

Epilepsy Unawareness


"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."
-Gretchen Rubin

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

Clearing Out Some Poopy Stuff


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

Moving Mountains


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

That's The Way The Story Goes...



Another term for balloon is bad breath holder.
-Demetri Martin

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.

ANY 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.