Thursday, July 9, 2009

The Joy of JOY

Life is kind of a drag these days...

And sadly, each day is usually a carbon copy of the one that preceded it. We get up, we take the kids to day care, we come home, we start work. We work, we grab a bite for lunch, we go pick up the kids from day care. We come home, we cook dinner, we eat, we feed the kids, we clean up. We bathe the kids, we watch some TV, we read some books or play on the floor. We go to bed.

Sometimes at night we take the kids somewhere, most times we don't. Weekends we try and come up with something to do, something fun maybe for the kids, or we do yard work, or cleaning, or visiting with family at some event. We don't go out together much, Jen and I, there just isn't a lot of opportunity.

Sounds like your typical, average, everyday life of a typical, average American family with 2 kids doesn't it?

Except for one thing...the seizures.

And that changes everything, and I have finally figured out exactly how it feels.

There is no sustainable JOY in anything.

See, I have a theory about the feeling of Joy when it comes to an activity. JOY, to me, is a reflective emotional state. So even the mundane stuff, the drives to day care, the visits, the playing, the dinners, the cleaning...when you have a real sense of contentment in your life, you can locate and stimulate the good parts that exist in the simpler, less razzle-dazzle things and they then become...enJOYable.

You get something out of them, laughs are generated, smiles exchanged.

You have some fun.

But seizures are a happiness and contentment eliminator. They suck any JOY out of your life, period.

And since you never know when a cluster of the little bastards are going to reach out of the darkness and bitch-slap your precious child, you live on the edge of...well, something. Something not able to be defined clearly by me yet. Mainly that is because I don't really know what lies on either side. And if I don't know that, how can I know what the edge is an edge of exactly? Hurts your brain to try to figure out what I just said, doesn't it?

And what is JOY exactly? We use the word a lot, but what does it really mean?

JOY: \ˈjȯi\ noun
1: the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires, delight, the expression or exhibition of such emotion, gaiety
2: a state of happiness or felicity, bliss
3: a source or cause of delight

The use of the word bliss is a good one, because that to me describes a lot of what JOY is all about. Blissfulness, delight, success, good fortune. All things that seizures eliminate, all things that the fear that accompany them tend to swallow up. But that 'possessing what one desires' is key, ain't it? Cause want we want to possess is currently, when it comes to Bennett, just outside our reach.

You can find JOY in cooking, JOY in cleaning, JOY in reading a book, JOY in sex. The simplest things in the world can and often do become the most joyous, the most desirable, because JOY seems to favor simplicity, doesn't it? Basic things.

And seizures and their end results? Far from simple. Super complicated. JOY-less.

Yeah, JOY can be found in just about anything you do, because JOY is pretty much a reflection of your inner attitude, your sense of blissfulness, delight, success, etc. that you put into it. But there is no JOY in this house, in our lives. We lack that because of what Bennett is going through, and no matter what we do, we can't seem to generate it. So when there is no JOY in us, there is no JOY to be found in anything around us.

But that's the REAL kick in the ass...even when we CAN generate it...we cannot sustain it for any great length of time, because sooner rather than later a cluster of seizures appears and shits all over everything.

That's harsh, but that's the way it is.

I have a hard time verbalizing that effectively to people outside my Infantile Spasms family. Those folks understand exactly what I mean, my IS Brothers and Sisters, those people will inevitably read this and nod their heads and say yeah...that pretty much sums it up there Lilly, ya blogging bastard.

But those outside that circle? Man oh man, do I have a tough time explaining it. It's getting to the point now where I don't try so much anymore. Used to. Stopped. Some get it, don't get me wrong. And by 'get it' I mean they have some idea...but even those people with whom I communicate the most will, by their own admission, suggest that they will never REALLY understand, since they have never gone through it.

I understand that, and bless them for trying so hard. They're good people. I'm very sad that as each day passes I am becoming more and more distant from them. It's one of the casualties or the Seizure Grenades that get tossed into our house every day.

So that's it, another Blogzilly entry focusing exclusively on the negative. Aren't you glad I went back to blogging about Bennett and all this bullshit again? Or would you rather see the cool Kubrick figures I got last week? Hell, even that kind of stuff has no JOY in it for me...I do it out of habit.

I'm hopeful that one day, things will be different. There's that damned hope again...Hey Hope? Sometimes you're a real asshole, you know that?

I hope that one day, things will be better for Bennett and we won't be watching him have seizures and feeling every single one of them as deeply as anyone has ever felt anything.

And I do use that hope to cling to the basic elements of life, I really do. Barely. It makes life tolerable enough, even though most of the time I do not feel alive. But I manage. And trying to keep hope nurtured helps a lot.

Like I've said many a time...I'm envious of any of you that have kept your Faith. I have not, and there are times I miss it...a lot. Faith can often be a substitute for JOY, and hell, sometimes people use their faith to generate JOY. Why do you think so many of the songs in church have the word JOY in them? Because JOY is about a purity and happiness of inner self, and Faith nurtures that.

Oh's Thursday, and a weekend approaches. The dreaded weekends...our least favorite time because of the frequency of our seizure exposure. Oh a few more days we will at least be able to be happy that it's Monday.

How weird is that? :)

Well, as I am often prone to do, I remind myself...could be worse...


  1. Yeah, in the midst of everything it's hard to find joy. But it will come back. You will learn ho to "make joy" again. Even when things are the hardest you need to remember it CAN be worse.

    Faith, what can I say. Even if you never step foot in church, your Faith can still live. By trying to make joy, and see the positives of every situation, your Faith will return. It may be a gradual return, but it will come back.

  2. Suck it up you moany bastard! There I made you laugh.

    We've talked about similar stuff before and I still have no words of wisdom for you. I should encourage you to go on a date with Jen. I could encouage you to take Carter to a game. Both would be nice but I would only be making you go places. I can't actually make you feel joyful. But, and this may actually be wisdom, if you don't go through the motions you won't find yourself in a place where you can find that elusive joy.

    By the way, faith is a choice. If you are ready to make that choice then you will find faith. I have not lost mine but I had a huge inability to pray while Emma was going through this hell. I was very glad of other peoples prayers though. Very glad of them.

  3. Joy.Hope.Faith.All very intertwined and often elusive when you feel as if your drowning.All can be lifelines but often not within our reach because our ability is hindered due to the everyday heaviness of our life circumstance.And your life circumstance,today,with Bennett, is heavy.Trust me,you know,I get that.The last 2 years has found me in search of all those things.In some moments I have found all these simultaneously and in others I have been void of them all.Today,I am on the quest for joy myself.Today,I am heading to my neighborhood psychoanalyst in hope she can help.Feeling some Post Traumatic garbage that is weighing me down.So I get it.If that means anything.And I do pray for you.Because often thats all I have to offer.

  4. So...I've written and deleted a comment twice now. I just can't think of anything encouraging to say. I'm sorry. I really wanted to pull out something uplifting and motivating...

    I get it. That's exactly why I'm at a loss. Because I know. I'm still living it. I may be a little further into this than you, but I think the pain is very much the same. That joy you speak of peeks out occasionally. When Austin does something awesome, or we have one of those precious moments...I sometimes forget about our situation. He's just my baby boy...not my baby boy living with countless seizures. I live on those moments. I savor them and they give me the strength to find that faith that has been temporarily lost. I get hopeful.

    It's agonizing when one of those joyful moments are interrupted by a drop or a cluster. It reminds me of everything we're facing. And just like that, I start over. Coasting on fumes of faith, so to speak. Then, I refuel on an innocent smile or those silly Austin sounds. It's a cycle.

    By the way, I quit trying to describe how this feels to "outsiders". It's impossible to fully comprehend the feeling of something of this magnitude.

  5. am I the only one who LOVED the happy elephant pic. And almost spewed their coffee at the poopy pic?

    Oh...and ditto everything Sinead said...


  6. Two years into this, and I still struggle to find ANY daily joy. Seizures suck the life out of JOY. My kids are able to make me smile at my lowest moments and darkest days.If I didn't have them this would be, as it feels at times, unbearable!
    I can relate to all your emotions, and I do find myself nodding in agreement as I read your blog. This pain, this kill-joy, simply sucks!

    Faith...let me leave you with this, which I find great comfort in...


  7. People in this country are brought up to think that relying on faith is a good thing, and that being without faith should equate despair. I'll tell you the opposite is true.

    Putting faith aside is a good thing. It means that you aren't going to waste your time desperately praying for a divine intervention that isn't coming, but rather that you will try to look at things rationally and make the best decisions you can under the circumstances with your own hands and brain.

    And let's face it, that's what Bennett needs, a dad has the strength and courage to stand up to this crap, try to make sense of it, and make the best informed, reasoned-out choices he can. Choices made based on hard cold data or at the very least educated guesses.

    It may not be comforting as faith, but it's what has the best chance of getting the most accomplished.

    Keep fighting, Ken.

  8. You don't know me, I'm a friend of Luke's, and
    I highly doubt you want a self-help tip from a stranger that doesn't involve a cure for your son, so please don't take this comment that way, but this post touched me and I thought I'd share something from my life.

    Two years ago, when my daughter was very ill with heart issues, I had a therapist who was big into Buddhism and had a sign in his office that said “We are shaped by our thoughts; we become what we think. When the mind is pure, joy follows like a shadow that never leaves.” He asked me to be good to myself, in order to be my best for my daughter, and he had me keep a "Joy Journal" which was just one thing each day that made me smile, that I did just for myself, or that gave me even the smallest satisfaction or pleasure. Trust me, I had nothing overtly joyful in my life at the time and no desire to keep even a one sentence journal. But I did it. Even if the one sentence was "Bought a slurpee" or "Found a cold Diet Pepsi hidden behind carrots" or "Guy at jeweler changed watch battery for free". And there were days when I honestly had nothing to write and those days were blank, but it shocked me that there were so few of them, truly, because all my thoughts were a soup of anxiety that I was certain soaked my entire state of being.

    Stupid as it sounds in the face of something as overwhelming as, in my case, a baby that might not live to be strong enough to get treatment, it really did help to order my thoughts so that joyful things were at the front of my mind, even though they were usually pretty lame. I mean, don't get me wrong, slurpees are awesome delicious and all, but they don't make a sick child well. It is recognizing that a slurpee is still awesome delicious independent from and despite a sick child that was a revelation to me.

    The fear and "edge" didn't leave me until months after my daughter had gone through surgery and was well into recovery, but the forced focus of my mind on the mundane joys like you said, of car rides and family dinners, did allow me to recapture some vague sense of happiness even when I couldn't muster up hope, and helped me to realize that joy could exist in our lives even if treatment didn't exist for my daughter. It was a terribly beautiful process of acceptance for me that made things, if not easier, less unbearable.

  9. Man.

    I love you and I love your family. I have no arguments to make to your VERY well written and expressed comments. When it comes down to a very, very tenuous level, the "faith" that separates us leans on a thought:

    NOW is actually a blink of an eye in eternity. Thus, the suffering of any of us now is....transient, potentially effective for growth, revealing of not my strength, but my weakness, and therefore refocusing me on my utter reliance on God for my NOW, and for my eternity. In my faith, God loves Dora Diane more than I can, knows her deeper and more fully than I ever will, and wants her to experience the "joy that surpasses all understanding." I have held on to that a few times when I was terrified of a headache here, a stutter there... but I lie if I don't also say that, while I was terrified and "holding on" to my faith, I was also silently reminding God that if anything happens to her.......I would have no more reason to remain.

    I still pray...harder than ever before, even through the paradox. Call me simple and crippled, but it is really all I have.

    And though you don't muster prayers yourself...I like to think that I've (+ all the others praying for you and Bennett and family) got you covered.

    Never, ever, ever, ever, ever, ever give up. I know you pretty well. You won't.

  10. My faith epiphany is this: I have faith that you will once again feel joy when Bennett is delivered from the daily onslaught of seizures. Before you start to judge whether or not that will happen - stop. I have faith that this will happen for you and I need you to have faith that this will happen for me. Faith is believing in something without looking for evidence that it is there.

    And in the meantime the gut punches will continue but we're made of strong stuff and we can handle it through the set backs and the meltdowns.

  11. It is SO hard to explain to someone outside our world what it is like because our kids LOOK so normal that I think they just can't comprehend the magnitude of what is happening in their little brain. That is why I am so thankful for you and all my blog friends because I don't know what I would have done if I lived in the time before blogs or the internet. I can't even imagine.

    You said you lost faith but I am SO SO SO glad that you haven't lost hope. Hold on to your hope. I have hope for you, for Bennett, for happier times for your family.

  12. JSmith5780:
    I understand. A lot of it is what you put into it. And as for Faith...I'll have to decide if I ever really want it back, then like anything else I'll have to do some work for it.

    You're right, that sometimes going through the motions is a necessary step, perhaps like pushing a car, an older one, and popping the clutch to get it started. I agree on the faith is choice thing...I chose to walk away, can't say that it was the other way around, especially since I can't PROVE it. ;)

    Hope the PTSD stuff isn't too debilitating. I had to take some meds for that. 2 years...that is a REALLY long time. If I am doing as well as you at that time I will remember who inspired me, all of you guys.

    Holli said...
    Don't sweat it if you can't think of something to say. I don't expect you to. I know you are right there with me, and that you have your own battles you are fighting. This week I had to sort of be rude to someone I didn't want to be rude to, just to get the point across that I felt they no longer had a real understanding of who I am anymore because of what I am going through. I'm probably gonna see a lot of good relationships damaged by this. Epileptic shrapnel. Hits everybody.

    Yeah the elephant pic was awesome wasn't it. And the poop sculpture was a nice contrast. Why I picked it. But got your Chugani date and I am super happy for you guys.

    I appreciate you taking the time, I really do. But as soon as people go down the Devil road I glaze over. I'm sorry I don't mean to but I have a hard time with literal faith translations and can't think of it in those terms if I am to somehow recover my faith. I just can't wrap my mind around a struggle between one good guy and one bad guy over every single microbe that exists. But I do get your point and thanks for sharing.

    Bryan said...
    I'm trying to stay rational, though I do believe Faith and Rationality can co-exist, but you have to be aware of the delicate balance between them. It's a fine line for sure.

    Amphora said...
    I don't know you, but am THRILLED you took the time to try to impart some wisdom. And you know what? It's actually a pretty great idea. I do get the whole Power of Positive Thinking thing, I really do. I think sometimes I look at it like a fist fight, and there are days I can't keep my arms up. That's when you see a post as bummer as this one. Then other times I can get in a jab or a right hook and get back into the scrap.
    But I may try your ONE THING A DAY TO note that was good. Fantastic idea.

    Yeah I am pretty much counting on you and people like you to keep my soul covered during my spiritual pit stop.

    Sinead Part 2:
    How YOU doing...that's what I care more about now from when you wrote a comment here. Worried about you...

    You help keep those hopes alive, you and a lot of he others. Now...get some more baby pictures up dammit!

  13. I always say "It could be worse..." too... That's what my daddy always said no matter how bad his ALS became...And HE meant it...With Colby, I TRY to keep that mantra going....And in the hours (or minutes) of the day that there ARE no seizures, I actually am able to muster up some of that feeling and hold on to it....And I am pretty successful (naively so)...Until the next minute or hour (or even day, if we've been lucky) when seizures come again....

    So usually, when I say out loud "It could be worse..."...I oftentimes laugh to myself and quietly mutter "It could also be better..."

    I do like the joy journal idea as well...My little mental trick is the "At least it's not..."...That helps me try and keep things in perspective....Like "At least he only had 11 drops today and not 15 like yesterday..." When you boil it all down, I think it's simply all about head games and finding the ones that work for each of us and get us through another tough day...


  14. I don't know what your exact situation feel like, because it's with a child and not with yourself. But I do understand very well what it feels like to be constantly on the precipice of something and not knowing where it actually is, is it two steps in front, or is it just one? Will I fall today, or will I fall tomorrow?

    As you might be noting, I've been arriving a little late at your posts, because I've been unable to sit at the computer for very long, and much less to produce coherent sentences.

    My cancer as come and gone, it's been totally removed, and it was a small surgery. I have to keep getting tested at least once a year, though they want me to get tested this first time just six months after.

    The cancer cells are gone, but the problem remains. Apparently the cancer they found was in the very beginning, it wasn't affecting anything at all, so it really wasn't the problem.

    But on Thursday my digestion stopped again, it was hard, unpleasant, painful, and it had my up for over 48 hours straight, but it ended. And I felt "well glad that's over" - that was my JOY. Joy just got kicked in the ass today when I woke up exactly in the same condition. I have a new appointment, and several new tests to do on Wednesday, but I out of hope that they'll actually find the problem.

    And now I'm back at the old jumping of the shadows, trying to predict when it's going to happen next, and get prepared for it. Well I know I can't but I still try.

    I don't dread a seizure, I dread my own body, because it's not working right, even though nothing shows up as wrong, and yet every once in a while it practically tries to kill me, by stopping every organ of my digestive tract, and I'm talking esophagus, stomach, liver, gall bladder, pancreas, small intestine, large intestine, etc. I say it stops, but it really doesn't, the peristaltic movements stop, but everything else keeps going, so after a few hours I have enough gastric acid in me to digest the Statue of Liberty, seeing as she isn't there the stomach walls, just try to digest each other, and then the intestines. And that's the kind of pain that you really can't describe.

    Enough about me.

    Ken, just one question, I remember Bennett used to have seizures in the beginning, but I also seem to remember that for a while he had two or three at most, but it seems that they are always in clusters now. Does Bennett only have seizure clusters now, or does he, once in a while, have just one or two, like in the beginning?


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