Thursday, December 16, 2010

Conflicts of Interest

Yesterday's blog about Music in Other People's Blogs had a very interesting comment in it from my friend Elizabeth, who writes A Moon, Worn as if It Had Been a Shell, and forgive me if I screwed up the capitalization on that, E, I never know if I am supposed to leave it all small, but then it doesn't look like a blog title (even though I used to have Blogzilly be all lower case...but I digress.)

Anyway, regarding my request that bloggers who write blogs, when they embed MP3 Players into their blogs, allow the readers who come to their page the option to hit play rather than have the music start immediately upon entry, Elizabeth said 'OH MY GOD. Thank you for saying this. I HATE it so much when I go to a "musical" blog. It drives me insane. But I'm just too polite to ask -- I'm glad you're a rude guy.'

I laughed. And of course she meant for me to.

But it did get my brain to churning about something I have been meaning to write about.

That blog entry, or the one with the letter to Santa, or The Blog That Almost Was regarding the Holland Essay, or a lot of the other things I have written about, like my problems I had at the ER a while back (the poopy thing), for example, probably wouldn't win me any popularity contests and certainly would not get my blog nominated for any Mommy Blog awards.

And I do, honestly, a lot of the time, sense a division between myself and various aspects of the Special Needs community. I could just be paranoid. I know one friend of mine who would say 'DUH' to that. Because I also sense a division between myself and MANY communities.

I can't explain exactly what I mean.


Now...I have some of that already just because of who I am. Like Elizabeth said in jest I say in seriousness...I can be a fairly rude guy. I'm not always...a palatable person to many people. I curse, I talk about poop and pee and erections and boobies and other uncomfortable subjects that many people find offensive.

I understand that aspect of myself.

It's been that way...well, for as long as I can remember really.

A good friend of mine in high school, and I did/do consider him a friend, lovingly once said to me ' are vomit, my friend'. I wonder if he (Scott M.) remembers that? We are friends on Facebook, but I don't believe he reads these things, so I doubt I will ever know, cause I'll never directly ask him.

It stuck in my mind though.

Never forgot it. On the one hand, at the time it REALLY hurt my feelings, but on the other hand? It wasn't entirely...inaccurate.

Because what is vomit? It shows up at VERY inopportune times, is not something people want to deal with, it often has a cascade effect in the sense that it causes other people to think about things they would rather not, and its presence often lingers FAR longer than anyone would like.

A lot of what I write about is like that.

A lot of what I talk about is like that.

I write and talk about some very uncomfortable things that can affect a lot of people (well, I hope a lot of people, I always wish that number 90 of Followers [it was 89 yesterday, welcome to Erika, the NEWBIE!!!] would creep up to 100, but I'll deal with that later). Some get on their computers and go on to the Internet to be entertained by TV or Movies. Some sign on to laugh at silly pictures. Some sign on for blog reading in order to find beacons of light and hope. Others for poignancy. Some sign on for games. Some sign on for porn (yeah, boyeeeeeee!!!). Some sign on get the point.

Most of the time, you go someplace, you know what you are gonna get. You don't have that luxury here. There are times I sign on and sit down to write and even I don't know what is going to come out.

Funny thing is, I'm a lot like that when I talk. I've gotten myself into some trouble a lot more than once by opening my trap and...just saying the wrong thing. The SAD fact is that I don't do it out of malice or bad intention, I just speak what I feel or think, with no filter.

And I don't mean to suggest that this is good, I'm just explaining it.

I remember once, while waiting for some tardy people at a BUSINESS meeting, asking some of the guys if they ever had a situation where their balls turned purple while riding their bicycle and if it ever lingered for a few hours and was that normal?

I may have used the word testicles, but still, several people were just shocked, and I just picked the wrong time, the wrong place, the wrong topic. Everything about it was just...wrong. I just was asking a question amidst a group of guys, I didn't factor in anything else...I didn't use any filters.

Yes I know...I can be something of a dummy.

Recently it was announced that Howard Stern had renewed his contract with Sirius/XM for another five years.

I'm a listener. I'm a fan.

I've listened, wow...for a LONG, LONG time. In fact, I can't remember a time in my life as a young adult when I did NOT, in some capacity, listen to Howard Stern. I was petrified that this year was it...that as of the end of 2010 he would retire. As stupid and dumb as this sounds...I was NOT ready for this. Not right now.

Now, most people hear the name Howard Stern and their buttcheeks clench up. They just HATE this man. Most of those people are non-listeners. And at the very least, in my world, in the comfort of my home, which is in tatters, he MAKES ME LAUGH, and I need that more than I need food and water right now.

Most of the Stern-haters react to what they THINK they know about Howard Stern, not about what Howard Stern is really about anyway. What he IS all about is speaking honestly, about saying what many people think but are afraid to say. And while some of the things that he goes on about and says can offend some people, he is, at the core, an honorable man.

But you would only know this if you were a listener and knew how he handles his life, how he handles his people, his businesses, his relationships, etc. Yes, IN THE SHOW, there is sexual content, yes there is cursing and farts and other foulness. Yes there are occasionally porn stars and freaks and all sorts of miscreants on the show, but there are also some of the most interesting and in-depth interviews of people you will ever, EVER hear. Because no one, and I do mean NO ONE, will ever devote the time and energy to asking a celebrity, or better yet an ordinary person who experienced something extraordinary, about their life as much as he does.

Is The Howard Stern Show everyone's cup of tea? ABSOLUTELY NOT. Neither am I. Neither is Blogzilly. And we all have freedom of choice. You can choose not to listen just as you can choose not to read what I write and I can choose not to read the blogs of people who have MP3 Players that play music too loud.

America. It's beautiful for a REASON.

(SIDE NOTE: I do, however, have ONE issue, but this is only a recent one. I do find myself questioning his over-use of the word 'retarded'. Didn't use to offend me. Does now. I know that if someone that he respects, like his father, were to tell him why the word has the impact it does he would listen, but no one ever has. But it bothers me. This is the first time anything on the show ever has.)

Well, if you ever wondered who one of my primary influences was/is in life itself, there you go. I have always been very quick to say (or write) exactly what is on my mind, for the most part filter-free.

And therein lies one part of a multi-pronged problem.

See, I understand that this blog is kind of at odds with itself, you might say. I started it while I still had one foot slightly wedged into the Toy Industry, and planned to focus most of the writing on toys, action figures, comic books and all that juicy geek stuff, a sort of continuation of the style of blogging I did on the websites for the toy companies I worked for previously. I fired it up shortly after I knew that my own Creatus Maximus venture was stalling out.

This was mere days prior to when Bennett's first set of Infantile Spasms exploded into our lives.

Who knew?

But when those seizures appeared, circumstances changed. And while the blog sometimes goes back to subjects like toys, or games, or other things I am interested in, it always comes back to Bennett. But truthfully, if I were to actually define it right now, the blog isn't really even about BENNETT, or his issues specifically.

Blogzilly is about ME, it's about MY journey and my family's journey as seen through MY eyes.

It's a conflict I have never truly figured out how to solve, because the journey itself, just as I do, lacks focus, and thus so do many of Blogzilly's entries.

So now I have a blog that has some readership that initially came along from that old toy crowd that isn't getting anything from that world, or if they do get some it is VERY sporadic at best. Instead they are served up words like Infantile Spasms, Oligoastrocytoma, and admissions that I cry like a little girl a lot of the time because my son bites himself and can't talk.

On the other side, you have some people from different areas of the Special Needs world, some fellow bloggers, some parents who have children with disabilities of varying kinds, who at first came here to lend support and knowledge and friendship and who've stayed for God knows why, but I fear sometimes think I go off the deep end and stray into subjects either too grim or too gross. Others find their way here from other Special Needs blogs that I frequent or comment in, and stay a while.

But certainly I do not offer the typical type of hopeful, inspiring material one might expect from a blog in the Special Needs community. At least...I don't THINK I do.

And thus I find myself feeling a bit...alienated from both worlds. From all worlds, not knowing for sure how to define myself, not knowing for sure how to define this blog and this space.

Here, then, is a question. Several in fact.

Does it really matter? Am I overthinking this?

Not simple questions, or maybe they are. Maybe I just need the objective eyes of people like you, who read these words, not the bleary, bloodshot, sleep-deprived eyes of the person who writes them.

Why do I even ask? Mainly because I have been thinking lately that I should try to grow this thing a little. Clearly I like doing it. Clearly I need SOME direction, some path. Clearly I need some more focus in my life. Clearly I am a decent enough writer to put my thoughts on digital paper clearly and efficiently and creatively. I've always thought about trying to expand this into something bigger, but the real question IT ready. Am I? Should I change it? If so, how?

Don't know, really.

In some ways I envy SingleDad (well, come to find out, now in MANY ways). But did I make a mistake by not being anonymous? Will I regret this decision to be so open later in life? Will I hurt my kids down the road or will I in fact help them? Should I 'reboot' and start over, anonymously, losing everything I built? These are some very hard things to figure out.

These are, truly, conflicts for me that I have been wrestling with for quite some time. All leading to one simple thing...I am craving more Definition of Self. Not just in these pages, but in almost every aspect of my life. I look at so many other people's blogs and everyone seems to have it so...together, and I always feel like a fish, freshly removed from the stream, flopping around.

No direction. No path. No purpose.

Well, I think I've rambled enough for today. That's quite a lot about my current state of mind. Any advice you may have is certainly welcome. It always is.



  1. What is it about the guilt-laden protestant ethic in America that requires people to have direction, path or purpose? What's wrong with just BEING, if that suits your state of mind at this point in your life?

    You want advice? Stop beating yourself up. Introspection is great, but guilt is a waste of time.

  2. I don't think you should change a thing. I think it's your raw honesty and BS-free, unpretending perspective that people are drawn to. It is very refreshing and also hilarious. And while perhaps your forthrightness is your most obvious characteristic, it was your sensitivity that first struck me. I think it balances out your outspokenness (is this even a word?) and keeps you from being rude or offensive. But these are just my fresh-eyed impressions, I don't really know anything. Just don't go all proper or sweet-inspirational on us.

  3. Here's my take on it - I love your open, intelligent honesty. Simple as that. MOST people aren't the way you are - like my grandparents. And you know what? I have NO IDEA what they thought about anything. At all. I know far more about what you think and feel than my own parents.

    We are humans. We have thoughts, feelings, emotions. You share them while most people never or rarely share them. So most people don't share the unique perspectives that define them as an individual.

    Does it come across as rude? Maybe. But it's an "intelligent" rude, not an "ignorant" rude. To me there is a world of difference. That's what makes Stern stand out as well. He's a damned intelligent guy. So agree with him or not, he puts thought into what he says. Does he like boobs? Of course he does, just like most males and some females do. But he has the cojones to say it outloud and in our American culture, that's considered so shocking.

    I have never had Sirius, so I've missed him since he went off commercial radio.

    One other thing about you, Ken, that I like. Your thinking is a process - you evolve. How many people do you know that are stuck in their ways? They can't evolve their mindset, they can't change, they can't even conceive of being wrong in what they've believed in or done for 20,30,40 years. But through the years, I've seen you evolve in your thought processes. I've seen changes big and small. Is it easy? No. I imagine no evolution or revolution is easy. All of it takes struggle and pain. Some people shatter, others are strengthened and others simply crawl out of the hole and muster forward. But you are not stagnant, you are growing. You progress. Sometimes baby steps, sometimes giant leaps. Just like Bennett. Just like Carter. But unlike some adults that once they have become entrenched, they hunker down and never move forward again.

    To me, that's a beautiful thing.

  4. "I look at so many other people's blogs and everyone seems to have it so...together."

    This line jumped out at me.A whole lot of lines did but this one specifically.

    We,who blog,do we always project and write about the real us?I am talking the real,to the core,us.I would venture to guess,the vast majority of us don't.Do we put out there,what truly goes on in our daily life?Are the majority of us,as put together,as we profess or appear to be?Speaking for myself,I would say no.Not all of the time.Heck,perhaps not even half of the time.And,how many of those blogs that we read and have connected with,would we really gel with if we met them,spent time with them,and got to know the real them?Very few I think.

    We write what we write,usually what is in that moment.Maybe something that is weighing us down.Heavy on our hearts.Joy moments and sorrowful moments but seldom the nitty-gritty of the daily grind.Does that make us frauds or less believable,or not authentic?I don't think so.It just makes us writers.Some better than others,like you and Elizabeth and some of us,just doing it.

    I certainly don't know how many come to my blog or why they come.I know I am not everyone's cup of tea.I mostly write,as you know, about this magical creature that was placed in my life to show me exactly how un-together I really was.Still am in many,many ways.I am a constant work in progress and I dare say I will continue to be,until the day I die.

    So keep writing Ken.About you and this journey.Your beautiful boy.Your beautiful family.Just be you.That's good enough for those of us who keep coming back.Allow it to be good enough for you.

  5. I say, relax and do what you want. Don't write on topics because you think others will want to read those topics. This is the greatness of a blog. It's for YOU and if other's want to peak in and read along. So be it. But don't change for everyone else.

  6. Zoey's Mom - you are so right. It actually depresses my wife sometimes because she looks at what some people write and she can't help but think they live these perfect lives with children who clean up after themselves and parents who never yell and their homes are filled with love and peace. She was just crying the other day because she was comparing to these people and I had to point out that some of them ONLY post the "good" stuff. That they live in chaos sometimes just like we do.

  7. Shit, you figured it out. Absolutely, we ALL have better lives than you. We know what we want, handle our kids perfectly, great jobs, ideal spouses, and we only read blogzilly because we have no vomit in our own lives! See, you fulfill an essential gap we have, you are our Creatus Vomitus.

    When you figure out your direction / path / purpose, the hell with where it is, just tell us how you did the figuring. Most of us will want to know.

    Anonymity is not all it is cracked up to be. I can't advertise my small coffee company, nor the vitamin subsidiary that I just started, but on the other hand I can say "You know, there are times I am holding my daughter and truly wishing we would both just die, right there, and be done with all this shit." Not something those who love us would understand nor can I just say to people to easily who know me.

    Oh, and Schofield barrel length ain't everything. But then, that's easy for me to say.

    Your open and honest voice is a very important one to this community. You have many supporters, and in many ways, we see parts of ourselves in your posts. Grow and change as you need to, and many of us will be along for the ride.

    As for "But certainly I do not offer the typical type of hopeful, inspiring material one might expect from a blog in the Special Needs community. At least...I don't THINK I do." Oh, just shut up, you retard, you.

  8. Holy crap -- there's so much I want to say!
    1. Thanks for the change of the background to a light green blue instead of the gray. It helps to see your words surrounded by a color because...
    2. ...we are all rooting for you. Gray made things seem so stark and tough...the light aqua seems....hopeful. Everyone wants to see you come through your struggles stronger, better, faster on the other side.
    3. Yeah, your life is a work in progress -- all of our lives are. (When they aren't you're either lazy or dead.)
    4. You need to blog the way you've been blogging. Folks need to read what they've been reading. Focus is cool, but it doesn’t necessitate a major re-engineering
    5. Read #4 again. I mean it. Your voice (raw, honest, pissed, confused, morose, excited, hopeful, Kennish...) has struck a chord with people. You are very good at what you do. Keep doing it.
    6. You're right -- Blogzilly is YOU. And it's about your struggles to be everything that you want to be...Raw talk on family, special needs, much needed distractions and everything in between.

  9. All blogs need more boobies, Ken.

  10. ken, Ken, KEN. I am really much too tired for all this tonight but so help me ken if you go all mushy on us or pull a rachel uchatel and desert the crowd or do something really stupid like go anonymous i will stalk you KEN. i will find you. do you hear me??? please Ken just keep doing what your doing. we love you for being YOU!!!

  11. Whenever I get to feeling like you're feeling (at least when you wrote this post), I either head to my cave-- the one in my mind -- or run to the hills. I wrote a post a while back about my not-so-niceness that you might enjoy. Actually, it's one that a lot of really politically conservative trolls always find and stab me with -- (

    I love the way your blog has "evolved" over time and read it with great avidity. The video game/superhero/sports worship I generally skip, but the rude stuff is right up my alley. I say keep writing -- your voice is genuine, authentic and appreciated exactly for what it is.

  12. awww shoot...back to the gray??

  13. I have nothing to say that everyone else hasn't said, but for watever it is worth, I read your blog because of your honesty, and rawness. I have plenty of choices of blogs to read, but I find myself coming back to yours. You say what I am thinking. In the way that I think it...I swear, I get pissed, and I stress the hell out. I hope you don't change the way you write.


  14. Anonymous:
    Isn't guilt WAY more a Catholic thing anyway? :) That's what my Catholic Membership Card says anyway. I do agree, BEING is very important, but purpose is important too. Especially for me, now...I need some sort of path, and by that I mean career. Because currently I have none. I need to narrow my focus in that regard, and part of the blog's questions are does writing have any part in that? I don't know. My mother thinks I should write a book. So do a few other people. The thought frightens me, but I scare easily. :)

    And remember, I wasn't beating myself up. I'm just asking myself questions here. Socrates or Plato or one of those guys in bathrobes said something like 'The unexamined life is not worth living.' I happen to really, really agree with that.

    I appreciate your weigh-in. I also happen to agree with it. I strive for balance and It's good to know that someone I'm not even very familiar with (in contrast to, say, Phil) would see it clearly. Means I am achieving a goal I set out to, and that means something to me.

    Phil, has been years and years since we have had this digital dialogue, and at least we've met in real life too, which is cool. That parents comment threw me for a loop. You know what? I think I missed the mark on one thing in this blog. I stressed asking if I should change something, and I think 'change' may have been a poor word choice. Evolution may have been a better one. Because just as you describe it...that is what I am seeking I think...evolution, not pure CHANGE.

    As for Stern, shame you do not have Sirius. The show has never been better, except for the suicide attempt by Artie Lange. That was a game changer. The show has not been the same since he left. It's like losing a family member, and clearly it rocked Howard Stern's world too. Even he questioned his role in it, as anyone would. 'Did he somehow foster it? Did he encourage it by not seeing Artie's self-destructive behavior for what it was because in many cases it was good for the show?' He (Howard) still sees a therapist three times a week. I think if you listened now you might be like 'Who IS that?' He's evolved a lot.

    Zoey's mom:
    That's very interesting, and something I hadn't considered. Well, I had, but not to the degree I probably SHOULD have. I'd say, if I had to meter it, that I probably put about 94-96% Truth in this blog, with the rest held back for reasons of varying degree. Sometimes because I'm asked not to talk about something. Sometimes I do it out of respect, like with John's battle with cancer, which I was very vague about all year, even though it gnawed at me, out of respect for Wanda (his wife) and Jen and her family. Other times, I have left stuff out because of personal embarrassment. One instance comes to mind of something I did this summer I never told anyone about here, but shared with a few Mom's...a behavior that reminded me of my Stepfather.

    But I wonder what other people's percentages would actually be? It's a good question.

    Short, sweet and always right to the meat. Reminds me of girl I used to date. BaDUMbump! Thanks! I'm here all week.

    You share your computer?

    Single Dad / Disabled Daughter:
    1. Creatus Vomitus almost made me do a spit-take.
    2. The dying comment pierced my left ventricle in a way very few comments ever can.
    3. I'm buying a Winchester Repeater.
    4. So in essence what you're kind of saying to everybody is 'Don't just be an athlete. Be an athletic supporter.'

  15. Kim:
    1. Whatever it is you are smoking, can I have some? I have not TOUCHED the palette whatsoever on the blog in months.
    2. Thanks for rooting, but there is no Aqua, I promise.
    3. Or zombie.
    4. Well, even you admitted that I might need to change up the blog layout some. Do you not recall all the template suggestions, Hmmm?
    5. I did read it again, and my head exploded.
    6. I understand, I just am questioning what paths I need to take, and in particular does this blog intersect with anything having to do with me and my career? Cause I am gonna need one sooner or later. Being a freelancer and eBay whore is getting old.

    Indeed they do. Indeed they do. I actually wish I could show MORE.

    I promise. No mush, and no Rachel Whodjatell or whatever her name is. Anonymity though, is a very legitimate question. Though I tend to think I may have gone, like the band Kansas, past the point of know return.

    You skip over the video game/superhero/sports worship stuff? You freakin' bitch. You know what I loved the most about the post you directed me to? What you husband said at the very end. Now don't get me wrong. You know 100% how much I deeply love and respect the military, and how I even wish I could go back and time and join the service and have a meaningful career as a military officer or go to the police academy or anything of that sort...but the greatest line was when you're husband said 'I mean, those guys volunteered to be there, right? Why the hell do you have to send them care packages?' It just cracked me up.

    I see that the drugs have worn off.

    KC's Mama:
    Thanks, and as you can see, I'm not going to change anything really, just gonna be doing some tweaking maybe and I was pretty much thinking out loud anyway.

  16. Yeah -- it seems my monitor must have been confused...but whatever the reason, I saw aqua and it was pretty. Yay.

    I think your blog is a tool for you. The process of thinking, writing, editing, posting and getting comment back is how you best find your way through your trials, tribulations and thoughts. Wehn it comes to your journey of being Bennett and Carter's Dad, it's been hlepful...and I think as a place to organize your thoughts, get others' input and move in on a new career, it can be just as helpful. I don't think any of your readership would be alienated by posts about "How-the-hell-can-I-figure-out-a-career-path-that-will-pay-a-decent-wage-give-me-flexibility-to-help-my-kids-and-not-drive-me-crazy?". It's one of the big questions that we all face...

    Add "Career Quest" to the possible topics and weave it in. let the blog and your readers help you get where you need to be.

    Seriously, though, what the hell was up with my monitor???

  17. Short and sweet:

    Clever people are not content/happy. It's to do with the way you perceive the world. I know too many smart people to think otherwise. And you, mister, are a smart man.

  18. "I look at so many other people's blogs and everyone seems to have it so...together"

    Haha, you kill me, man. I KNEW you weren't reading every post over at the bunnyblog :D

  19. Suzanne
    I might agree if a substitute for the word 'smart' was the word 'creative' or 'artistic'. I've known many smart people who were not this tortured and were VERY content and happy. Certainly 'creative' or 'artistic' can also BE smart, though. :)

    DISAGREE. You are one of the people I DO think has it together. Look at the things you have accomplished during an UNBELIEVABLE time of complete chaos and crisis. The money you have raised. The move you achieved. The job you have KEPT. The second child you had and are raising. The family you have kept together. Don't kid yourself my are doing amazing things while a shitstorm falls around your ears on your little girl. I'm not only extremely proud of you but I am inspired by you every single day.

    Yeah...I think you are very together.


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