Thursday, March 17, 2011

I Gotta Bad Feeling About This...

I'd been having an e-mail exchange with a friend of mine which, for some reason, on one of these last few evenings when I could not sleep, prompted me to go back and re-read some of the blog entries I had made over the past couple of months.

In the words of everybody's favorite overly-pussified robot C-3P0, 'What a desolate place this is.'

I mean...WOW, a lot of the stuff I have been writing about lately has just been DREARY, hasn't it? I'm not suggesting that I have ever been Mr. Happy Fun-Time on a regular basis, but I don't think I have ever been this...GREY...for so long a stretch.

I used to pepper in some funsies much more regularly. A post or two about some toys, maybe some movies, some lists, some this, some that. You know the kind of posts I mean...the ones nobody ever comments on.

THOSE kinds.

The ones with the little block figure guys that I think are awesome and most people are like...How did this freaky guy EVER get laid enough times to be able to even HAVE a disabled kid?

And of course I did that thing where I was Mr. Super-Thankful, some football talk but as the holidays approached it seemed like things were getting more stressful and then a slightly weirder shift in tone occurred. It appeared as if I was back on 'The Road', living out that post-apocalyptic journey again.

Not just seeing the glass as half-empty, but seeing the half-empty glass as containing the foulest smelling, most awful-tasting shit you can possibly imagine.

Or, if you want to go ahead and continue with the Star Wars references, cause that's always fun, let's go with the Death Star's famous sequence when, during the awesome rescue of the Princess, our heroes Luke Skywalker and Han Solo, along with his his trusty Wookiee first mate Chewbacca and the Princess in tow, decide, at Princess Leia's 'suggestion', to escape the Cell Block's main artery by jumping down a garbage chute into a Trash Compactor.

What a wonderful idea...if you can get the door open once you are inside.

They can't, and the mayhem begins, first with Luke getting attacked by an alien rodent, and then the Empire literally attempts to 'crush' the Rebellion with one swift stroke by squeezing our heroes into Lemlas Bread (OOPS...wrong trilogy) as the walls start moving closer together.

The Trash Compactor sequence did mark the first re-usage of the phrase 'I gotta bad feeling about this.', when Han Solo says it as the walls start closing in. Luke muttered something similar to it earlier as they approached the Death Star in the Millennium Falcon.

He said 'I have a very bad feeling about this.', and that phrase, or some derivation of it, has been used in every Star Wars film ever since.

The Trash Compactor also happens to symbolize, quite nicely, EXACTLY how I feel, emotionally, pretty much every day, during this tumultuous period of my life.

Like the walls are closing in on me.

And unfortunately for me, right internal DVD player is broken. It is skipping, so instead of getting to the 'We're all right! You did GREAT!'...I'm still hung up on the 'Curse my metal body I WASN'T FAST ENOUGH!!!' isn't called 'A New Hope' for nuthin'.

I have seen the movie before, and I know that there IS a way out, and eventually Artoo is gonna turn that knob (Mmmm...knobs...). Meanwhile, for the time being at least, I'm still scrambling around in a bunch of smelly blocks of shit, trying to sneak glances at Carrie Fisher's nipples (Mmmm...nipples...) and stay out of the water so that one-eyed turd-eater doesn't grab my frightened ass.

But there is that little voice in my head that wonders...will the disc ever stop skipping? How do you kick that voice in the mufuggin' teeth?

I wish I knew.

(ASIDE: Speaking of teeth, my dental work has started...I have a plastic crown in my mouth. Feels weird. More on that in another post. Something VERY weird about the missing molar.)

Anyway...I need to at least TRY to start turning this ship around ('Yeah...I think you're right...'), and soon, and since it's a pretty big-ass ship and it turns pretty damn slowly, I gotta start right now, and it starts with, unfortunately for you, just a little more dreariness.

Don't just stand there...try and BRACE it with something!

But that's how life works. It's called 'putting all your cards on the table', if you will. Or 'cleaning our your closet', or whatever the frak you wanna call it.

But I have some more purging I gotta do. And you gotta bear witness. That's your job if you read this thing. It's what you signed on for. Lucky you, huh?

I'd say that my latest downward spiral started before the holidays, before my Dungeon Epiphany I explained in the blog just before the last one about the Epilepsy Newsletter. It started with Bennett's behavioral issues getting more intense and the passing of Jennifer's grandfather, and as we headed into the holidays I was already feeling very, very bleak.

I was ripe for that breakdown in the basement.

It wasn't until January, however, until I started to have the most trouble coping. I found myself, by mid-month, almost back to where I was in the summer of the previous year...back to losing myself in the world of the X-Box, in full avoidance mode, and definitely loaded up with a full plate of depression, a plate which I am now in serious need of clearing off again.

That's how it works with me, or how it HAS worked with me, most of my adult life. Almost like junk in a room that doesn't get cleared out enough.

Accumulation. Restriction. Isolation. Frustration. Realization. Conviction. Clean-up. Renewal. Forward Momentum. Healing. Repeat Cycle.

Hey it's like Shampoo. But for bald psychologically deficient middle-aged dudes.

What I have to learn is how to not let the cycle repeat. Then the game can be officially declared won. If that is even possible.

I'd like to believe that it is.

It usually takes years for the cycle to repeat though, which is why it has never been as much of an issue before. But I also have never had as many things go wrong around me as they have so often in the past couple of years. Prior to now, there has always been much more breathing room between crisis events.

Of late, it's only months or weeks. Not enough time for me to keep the rooms cleaned up inside my hairless melon. Carter's kidney issue had me on edge, as did a LOT of things, and it was not surprising at all that my Mom had been hesitating for quite some time to call me to discuss something that she needed to talk to me about.

See, here in these pages I talk a lot about being a parent and how hard it is to watch your child suffer.

So you can imagine how difficult it might be if you were my Mother to read these pages day in and day out. You GOTTA read 'em, cause you want to stay connected, stay informed, you want to know what is going on in your son's life.

And at the same time, to read some of what your son writes about...well, I now know, as a parent myself even though it is not EASY to project that far ahead into the future with my boys, it would be difficult if I were in her shoes, to read a blog written by one of them and see their words like this laid bare, to experience their suffering. Especially in such an open way, which for my generation is probably easier to wrap my head around than it is for hers.

While not as shocking or hard to take as the Mom's watching the segments from Electronic Arts new release of Dead Space 2 (one of THE greatest ad campaigns EVER for a video game, I highly recommend you Google it!), it still can't be easy.

Just as I can understand how difficult it must be for her to have this insight into my life and some of the pain I feel, I also can understand how it would be VERY hard for her to come to terms with making a decision to inform me about something she recently discovered that she knew could only add to my burden, not make it lighter.

It's a hell of a responsibility, one I hope to never be in.

How do you tell your son who has been struggling so hard for the past two years with his own life that you have a terminal illness?

Eventually you have to just pick up the phone...and do it.

It took some time, but not that long, for her to work up to it. She did preface it by wanting me to know what I just laid out for you...that she had been hesitant to tell me this because of the fact that things have been so hard for me of late. But on the other hand, she also knew me, and knew that this was something that I would want to know.

She's absolutely right. I do want to know.

Shut down all the garbage mashers on the Detention Level!

Not that I am happy to get a phone call like that...not at all. But I am much better off knowing the score than not knowing, especially since my Mom had been dealing with what had previously been a mysterious medical ailment for some time, over a year, which we had all thought was a leaking heart valve that we had been told, ultimately, by her physician, was not a huge deal overall.

To know now that she has something in addition to that, and that this Idiopathic Pulmonary Fibrosis is the cause of her symptoms and NOT her heart, is somehow more...meaningful, and I can't explain why.

I guess because the past two years have taught me to detest complete and total medical mysteries. Not that IPF is not a mystery...because as many of you who have dealt with IS and are familiar with the word Idiopathic know, that word ITSELF means there is no known cause...but what I mean is that the mystery as to what was causing her symptoms was solved. Some answer to that question was at least achieved.

I like ANSWERS. I like to KNOW what a diagnosis actually is. I have never felt satisfied with my son's diagnosis. Still do not.

For a long time, Mom had asked me not to talk about this here, and it was seriously weighing me down. But I respected her request and her reasons and honored them both. Eventually, she lifted the ban because she saw that it had me a little locked up as far as in how often I was posting (and she does like to read this, after all).

I am concerned about what people would or would not say in the comments section, and how it might affect her, and I'm only asking that if you decide to comment my Mother is the type of person that would not want pity, so please choose your words carefully.

She is also very much alive, full of vigor and exuberance and I will personally send her to your house to kick your ass if you piss me off, thank you very much.

But even after the ban was lifted, I wasn't even sure how to bring all of this up.

How DO you bring something like that up?

'Um...hey, hi everybody, um, yeah, my Mom called...yeah, we talked about Fringe, the playoffs, and oh yeah, she's got a terminal illness.'

Now...don't be all Mom GAVE me this sense of humor, she probably chuckled at that. She chuckles at dick jokes too. See that's one of the things that makes her special. And that's partially what makes it much easier for me to write about this than I actually thought it was GOING to be.

And because for the most part...she's OK with it.

And don't misunderstand what that means.

Is she thrilled this has happened? That'd be a no. Would she rather not have this condition? Um...DUH. But I don't think that was ever going to be an issue for her. She's really one tough Mother. So to speak. I think for her, though, the key issue is going to be, and always will be...the people she cares about. How will THEY handle it? How will I? Can you blame her?

But it was something my mother wrote to me recently that resonated with me, and even though I did not ask her for permission I am going to share it here because it does sum up her thought process and showcases the positive person she always has been and always will be.

'This is what I am talking about: 'In some people the disease gets worse quickly (over months to a few years), but other people have very little worsening of the disease over time'. I'm betting on being one of the "other people"!'

It's that kind of attitude that has saved me from total annihilation, whether you realize it or not, Mom.

Time and again. It's that life lesson that allows me to get up each day and keep trying, to continually look for solutions to our problems, to keep holding on even though my arms are so...freaking...tired.

I've said it before and I'll say it a thousand times...anything good that I am I got from you. And although I've been struggling for a while, and even though it seems like it's one thing after another, if I can somehow manage to rustle up one/tenth of your strength, then I'll get through all of this...somehow.

And then a small rounded smooth head will turn and whirr, and a robotic arm will rotate. I'll hear a clack, a couple of clangs, a chirp and some beeps, and through the tiny little transmitter a voice will cry...

'We're all right! You did GREAT!'



  1. Well my friend,you have one amazing mom and her incredible attitude will be your trusty guide through this.Just as she has been for all these years.Will send out my prayers and positive vibes for you all as you navigate this these new and uncharted waters.

    You know,I have been schooled in so many new diseases over the last 4 years... IS,AML M7,SMA,neuroblastoma and on and on and, just last month,another blogging mom posted about her dad who was just diagnosed with non other than...idiopathic pulmonary fibrosis.Read up on it then and now feel I have a small grasp on what this diagnosis is for your mom.Will keep reading

    And,just curious,was my reference to my tubal reversal,the reason for your holy sh%* comment on your comment.If it was,I get that alot from people!

  2. Ken: That totally sucks about your mom!

    Carol: That totally sucks!

    My mom has an equally vague diagnosis (Primary Progressive Multiple Sclerosis) that she's been kicking the shit out of for about 15 years now. She is a testament to how grit, humor, and a bone-deep stubbornness can outwit diseases even doctors are baffled by.

    So, Carol (since Ken assures us you'll be reading the comments), please:
    1. Laugh. (You know, why the hell not?)
    2. Don't let your doctors get away with being lazy or stupid. Just because they have impressive degrees doesn't mean they're always right.
    3. Trust your gut.
    4. Hang out with Ken as much as you can.


  3. Your mom laughs at dick jokes? There ain't nothing funny about dicks, Ken. I don't get it ...

    So, at least we now know who to blame for giving us Ken. Thanks a lot, Mrs. Blogzilly. ;) And good luck with the IPF ... may you truly be one of the "other people."

    Oh, and Ken, have you seen Carrie Fisher lately? That's one set of nips you can view on your own ...

  4. A realization you may not be ready to accept, some situations don't have a solution.
    Since you like film so much, to illustrate my point I would recommend, if you are not familiar with it, another one of my top ten: Valhalla rising. For some reason many think it pretentious. I find this film uplifting, if that is strange enough for you.

    It sounds like your mom is a fighter, so fight on Mom, not because you're expected to but because life is worth fighting for.
    I disagree though about knowing the diagnosis. Being a medical man myself I diagnosed my mother a full year before her neurologist dared to. My mother has ALS and one of the most aggressive cases seen. In five months she went from normal to completely losing her speech and now one year later she can only use her hands a little. The most vibrant, kind and positive soul I've ever encountered reduced to the same condition as my son Segev, including g-tube. Very soon Segev will actually be in a better condition than her.
    And there is no way that I can be who I am with her. That is to say, help her. This pains me no end.

    But the depressing tendencies of our spiraling thinking is the real problem.
    Accepting the situation and being OK with it may be hackneyed cliche for some, a sign of failure for others, but acceptance never has to mean lay down and die: just doing what you know best to do is fulfilling your potential and should not fall short of your expectations of self or the situation.

    I want to tell you again how much I appreciate your honesty because it allows true communication of the most essential elements which not only bind us together but raise us up to a higher place.

    It's doable.

  5. I'm laughing and crying and shaking my head and wanted to know you and your family, Ken, all at once over here, out here. Under here -- the rock under which I periodically go to to forget my troubles. In all seriousness and honesty, I will say prayers and send good wishes for and to your mother -- that she'll draw on her formidable strength and sense of humor to sustain her and that your own personal loads will lighten. Love and peace and all that stuff to you.

  6. Got here from Single Dad's blog. I am so sorry you have to go through this right now. Tell your mom people "out there" are rooting for her.

    And she can laugh at Single Dad's dick all she wants.

  7. I read your post yesterday and I could only think of very lame and trite things to say. I still don't have any wise or inspiring comment but I wanted to let you know that you and your super awesome, strong Mom are in my thoughts and I'm sending prayers, good thoughts, positive energy or whatever helps into your direction. I wish her peace and lots of strength.

  8. I'm guessing you worked on this one for quite some time....Excellent job of capturing so much.

  9. DaisyandAriasDaddyMarch 19, 2011 at 11:32 PM

    Your mom sounds like a great person. That isn't surprising, given what little I know of you--apples not falling far from the tree, and all that...please know that we're thinking of you and your family and hoping for the best.

    Stay strong.

  10. I have looked into that abyss, and it has looked into me. There has been that time in my life where everything turned to shit, marriage broken, son taken 1000 miles away, close family members dropping like flies. Times when I turned the oven on to cook a pot-pie (the only thing I could stand to eat for some strange reason.) and then wondered why I'd turned the damn thing on 3 hours later, after not even putting the pie in the oven. (I still don't know why pot-pies) It's hard, to train your brain not to go back there as you're trying to pull yourself out, bit by bit. It's also good to have a Ninja-Mom around to kick your ass when you need it. (Mine is a complete ditz but she tried real hard) Some day, so gradually you may not notice it, the carbonite with melt off and Carrie Fisher will be there (after Jenny Craig) to kiss you awake and perhaps even wear that metal slave-costume without the fabric so you can see her nips... Something to look forward to, anyway.

  11. I'm sorry, I can imagine how that adds to your burden. We just got word that my grandmother, Austin's Nana, who he is extremely close to, has stomach cancer. They are saying 6-12 months. My gma is strong though, just like your mom, but when I talked to her, I heard defeat. And then I said the words to her that made a difference. Fight it, just like Austin has fought IS. That got her butt in gear. Now to figure out how to tell Austin.

  12. Wishing you and your Mom the best of luck with the IPF and hope you have lots more time together.

    And yes, I did check out those dead zone 2 spots and they are hilarious! Several of them made me laugh out loud. I really want to buy that game now, just don't think my crappy computer could run it.

  13. Ken- i am heartbroken to read about your mom's illness- she is someone with whom I really connect-I like her so much and I really respect and really admire her. Those few years that I worked with her helped me to grow as a person and I will never forget that. She is in my heart and my prayers and i will write and tell her so. Please let me know if there is anything that I can do

  14. Ken- also- my comment was not made out of pity but admiration and concern. But by all means- send your mom over to kick my butt- i would welcome it LOL! We all need that once in awhile whether we realize it or not!

  15. Um..."Capcom's new release of Dead Space 2"


    *shakes head*

  16. Clearly just a mental mistake made while writing the post, which was much more about the anguish I was feeling about my Mom's possible shortened life rather than making sure I properly credited the company that made the game.

    My bad.

    I changed it to Electronic Arts.

  17. Of course I was kidding about the EA thing.

    I was actually speechless after reading this... wanting to give to give words of comfort... but not violating the "no pity" rule... so of course I just made a joke.

    I can't imagine getting that news.

    The other thing I thought reading this was "good grief! How much can one family take? OK.. that's enough universe! Give them a break!"

    I know at times you feel like your blog is just about your weaknesses or your failures or your frustrations... but it also really shows your strengths. The fact that you can talk about all of this, that you are so open and so raw and honest... it does give comfort, strength and points to ponder for ALL parents... all people who know you, not just the community of IS that you have been thrust into.

    It's unbelievable that all of this has just occurred, has been heaped upon you in just a few short years.

    But it does remind me of the words that my father wrote to me once in college during a particularly hard time in my life:

    "It is unfortunate that iron must pass through fire to become steel."

    That's your journey Ken.

    It might not mean much to you in your current head space, but you and your family are in my prayers.

  18. You know, Daniel, the truth is, I'm in the wrong here. I apologize. I know you well enough, and we have enough history, that I know you were joking. Reacting that way was not really me...I was hot under the collar from something entirely different. The heat just happened to land in the wrong place.

    I'm sorry.

    If it makes you feel any better, I do know why I THOUGHT Capcom...Dead Space is the first game that actually puts me in the mental frame of mind that the glory days of Resident Evil did (RE 2 & 3 and CV), which is probably why I typed it. That's high praise, since really that WAS the survival horror franchise that used to be what I always hung my hat on.

    As of now...I don't even follow it much anymore.

    Anyway...that's the reason for the blunder and my ham-handed attempt at an apology for jumping the anger gun. You didn't deserve it.

    As for what you said after that? What can I say? You know I can't comfortably accept a quarter of it, but I thank you and it honors me that you hold me in that high of a regard. I've never quite understood WHY, especially after displays I just let loose, but I do appreciate it.

    And does mean something. Lots and lots of somethings. Especially in my current state of mind.

    Thanks man.


A Beautiful Blank Page

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 tem...