Seized Mon Day

Delight in the abstract and specific joys of the world around you, for in it are hidden and revealed a constant stream of surprises that in their least provide enough energy for happiness and at their greatest allow for utter rapture.

I wrote this on Wednesday afternoon, on my phone, while sitting in the park.

It was a beautiful day.

It’s a beautiful thing to say.

I believe it.

I barely remember writing it.

I vaguely remember feeling it.

It’s easier to tell and be told to carpe your diem than it is to actually consistently do it– I’m reminded of this every day that I accomplish or feel or simply think less than I’d like to.
Which these days is pretty much every day.

Carpe‘ing all your diem depends, unfortunately, far more on brain chemistry than we’d like to admit.  Wake up adamantly enough on the wrong side of the bed and you’re unlikely to smell any goddamn roses at all, even if somebody spot-welds petals to the insides of your nostrils.

Conversely, sometimes for no good reason at all, a day just seems easier and things feel lighter.  The world, out of the blue, becomes manageable again.
Not just manageable– beautiful!  Rapturous, even.  A goddamn hootenanny!

But wait, why?  What changed?

Maybe nothing at all.

Maybe just a few stray neurons in your head that were bumping up against something ugly have now for some reason found a clear path to HappyTowne.

Maybe that happened by accident.

Maybe it happened because you took a pill, or had a drink, or met a girl.

Maybe it happened because you seized the day.

Maybe it happened to me on Monday because I seized that day.  Literally.

Which is to say: Monday, I had a seizure.  And ever since, I’ve felt a little better.  Either that or I’ve developed an emotional dependence on the 400mg of Temozolomide that I take 5 days out of each month, and am only happy when I’m feeding my chemo habit.

I doubt that.

What I don’t doubt is that ever since I seized Monday, I’ve felt a bit like somebody rebooted my brain computer.

I suspect that on some molecular level, that is exactly what happened.  Hooray for seizures!  (Un-hooray for the hole I bit in my tongue!)

Anyway, what this experience has taught me (besides the fact that I should have a mouth guard on hand when I’m feeling seize-y) is that the regulation of brain chemistry (mood, cognition) is a tricky deal, with a lot of variables.  Some of these variables are under our control.  Many of them are not.  Many of them will never be.

The best we can do is to continue to try:  to try to enjoy and to live and to love and to feel rapture.  And– this is the most important thing– to try not to beat ourselves up if we’re not feeling it on any particular day.

Because as long as we have another day, we have another day to seize.

I hope I seize today.

I hope I don’t seize, today.

I’m getting a lot of legs out of this pun, for a guy who who hates puns.

But while we’re on legs (and jeux de mots), that brings me to my final point: the “Hakuna Matata” of the early 21st century…


One Foot In Front Of The Other.

Seize the day, if you can.  If you can’t, OFIFOTO will do.

I’m havin’ a real hard time

getting through this.

I’m having a real hard time knowing where this is going.  Figuring out how I’m gonna get there.  Trusting that even if I do get there, that there’s something waiting for me on the other side.  (And I’m not talking about death, I’m talking about life.  About being on the other side of what I’m going through right now.)

If you’ve seen me or talked to me recently and I seemed like I was doing well, that’s because I was happy to be around you.  I was happy to be talking to you, to be looking at you, to be discussing something or laughing about something.  To not be alone in my head thinking about how hard of a time I’m having.

Because most of the time, when I am alone, it’s hard, and I’m not doing well.  Even though technically, statistically, I am doing well.

For example (1):  All of my hair has grown back, and my body is as strong and healthy and functional as it was a year ago, before all these shenanigans beganigan.  I can still see and hear and smell and feel and move everything pretty much the same as I used to be able to.

“That’s great!” you say, and mean it.
“That is great.” I feel, and mean it.
It’s really, really fucking lucky.  As I said: technically, statistically, I am doing well.

For example (2): The results of my MRI on Tuesday were good enough that my doctor expressed what could fairly be classified as untempered enthusiasm.  He even said something like “We don’t see results like this very often!”  He was optimistic.  Excited, even.

“That’s great!” you say when you hear this.  And you mean it.
“Eh.”  I thought, when he told me.   And then I thought: “Wait, why am I not at all relieved right now?”
I wasn’t relieved at all.  And I’ve been thinking about that for the last two days.  Why was I not more relieved?

Because it doesn’t really change anything.

I’m still having a real hard time.

If you’ve seen me lately and you said “you I look great!”, and I laughed and rolled my eyes, or looked sad and told you that I don’t feel great– that having my hair back and being tan is no indication of what’s actually going on on the inside– then I’m sorry.  I’m sorry for not just being gracious and saying “thank you.”  I’m sorry for making you feel uncomfortable, or making you sad.  If I did that it’s because I feel sad, and sometimes I guess I just need to not be alone with that feeling.

I’m sorry for not being more grateful that at least I look healthy.  Because I know it makes it easier for everybody else that I don’t look like I’m dying.  It makes it easier for everybody else to be hopeful, and supportive.  And I should be thankful for that.  Because I want it to be easier for you.  I don’t want to be a burden.  I don’t want it to be hard for anybody but me.

But the reality is that looking and seeming alright— that actually makes it harder for me.  It leaves me feeling more isolated— even from myself.  It reminds me of this person that I want to live up to, for you and for me, but I know full well that I can’t.  At least not right now.  I just can’t.

When I look in the mirror I think what everybody else thinks: “Hey, that guy looks like he’s doing alright!  Look at that hair!”  But then that thought immediately bounces– hard –off of everything else that’s going on inside.  Which is, among other things: fear and disappointment and frustration and sadness.  And fatigue.  Oh god, the fatigue.

I’m sorry for needing to point out that I don’t feel great.  I’m just having a hard time right now.  And it’s mostly– no it’s all –in my head.

I don’t think I’m depressed– if you walked in here right now in a clown suit or a Lincoln costume, I’d laugh really hard and mean it.  The laughter would come honestly and easily.  And it would come as a great relief because laughter is one of the few things in my life that remains uncomplicated.  And it’s one of the things that always– always —makes me feel better.

I’m just tired.  Most of my energy is being spent these days just trying to think my way through these days.  Trying to out-think the worry and the fear and the frustration (above all the frustration!)  Trying to think of nice distractions that will be easy enough for me to take on, and that will offer enough honest reward that I will feel like I’m enjoying myself, that I’m getting something out of the day.  That I had a good day.  That I’m living my life.

That doesn’t leave a lot of time or energy for shopping, or cooking, or working.  Or for writing, which is all I really want to be able to do.  Which, thank god, I’m doing right now.

I’m just getting so much less out of my days than I used to be able to–than I still desperately want to be able to–that it leaves me deeply frustrated, and disappointed in myself.

Hopefully this will all change soon.  But lately, it’s just been getting worse.  And that’s why I’m having a hard time.

My brain is just tired.  It’s tired from all the fighting.  It’s tired from all the healing. It’s tired from having so much hope and then having so much of that hope torn away and thrown into a waste bin at the worst possible moment.  It’s tired of thinking about that.  It’s tired of being hurt.  It’s tired of feeling sorry for itself.

Above all else though, my brain is tired from all the shit I’ve had to put it through to keep myself from dying.  Make no mistake: I’m glad I put it through all of that shit, because it’s the main reason I’m still alive right now.

I am still alive.  And technically, statistically, I’m doing well.  I’m just having a hard time.

All I want to do is to do something meaningful– to write something meaningful –and a few months ago I was doing exactly that.  But then I was forced to stop, and all I want to do right now is to get back at it.  I’m just so tired and so afraid that I’ll never wake up fully enough again to pull it off in the way that I dreamed I could.  In the way that I still know I can, if I can just summon enough energy.

If I can just stay awake long enough.

If I can do that, then it will all have been worth it.

I feel like I should go take a nap.

I really, really don’t want to.

I want to be awake, and alive.

I think I’ll go for a jog instead.