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.


  1. The first yours truly learnt of infantile spasms/West syndrome was reading a small guy called Liam and his father. He had Trisomy 21 too.

    There's a lot more to epilepsy than seizures!

    A lifetime's worth of self-evaluation.

    1. I’m up for it.

      Eric is an amazing father, I admire him very much. What he has done and continues to do just blows me away.

    2. Yay!

      Eric ... is ... a ... legend.

      And he's pretty quiet about it these days. Respecting Liam all the time.

  2. To have feelings like this, and to be able to share them in some way, is a blessing to all of us. Thank you.

  3. I agree with Carol, to be aware of what we Feel and to transparently Share it, however raw and visceral, is more of a Blessing than we often realize. I have numerous confessions I've purged about Caregiving especially, mostly in my Blog, it makes me feel vulnerable and yet also liberated from pretending that a Sanitized version of a messy Life Dealing with shittiest of shit should ever be attempted... it's not keeping it 100% if you do and often creates an illusion others valiantly try to live up to becoz the illusion is believed and compared to Real Life... the Stuff of actual Confessions. Virtual Hugs... I got so emotional reading what you first read about the catastrophic... it's such a Hopeless word isn't it?

    1. It is, and yet it isn’t. Carol is my Mom. I’ve been planning a write up on her in the coming weeks, as she defines the word hope to me. I won’t spoil it for you, but in the face of some of the worst possible events I’ve never seen someone embrace hope with so much grace and dignity.

      I’ve been trying to get your blog in my roll, but having trouble with my Widget. I think I screwed it up when I went to contributing with two google accounts. Long story.

    2. Good to see Mum/Carol as an icon of hope, Blogzilly/Ken.

      Yes, Bohemian, and it is a power!

      Another good caregiving blog is LIGHTS AND SHADES which is based in the Dordogne. [midwest France].


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