SEIZING FRIDAYS: The Inconvenient Truth About Smoothies

You had a great day, you were relatively alert and awake. (Which is rare, but maybe getting less so?)  You got some work done, and you had a great meeting about your writing where you were not only talkative (and reasonably articulate), but enthusiastic.  You felt good about what you’ve done, and about where you’re going.  And that feels a lot like hope.

Even better that that, you felt even better than that the day before, when you also got a lot of work done, and despite getting half of your face gently torn apart for two hours by a dental hygienist named Sonny for the third day in a row, you still had enough energy to come home and go for your old standby five mile jog, which felt fantastic and gave you even more energy for the evening, when you went out and had some otherwordly tacos with a very very good friend who lent you some money to help keep a roof over your head and otherworldly tacos in your mouth.

And all of that on the heels of an MRI on Tuesday that came with very good results!

Things are looking up, huh?

Then, back at home, you’re sitting at your computer doing some work and a picture of that creepy guy from Breaking Bad catches your eye and you suddenly realize that you’re feeling a little bit weird, just totally out of the blue.  So you close the page and you look away from the screen, and instead of feeling better you suddenly realize that you’re feeling really weird.  Like smoothie weird.  Like seizure weird.

If you have brain cancer, do not look at this picture (or watch this show)

If you have brain cancer, do not watch this show.

Not wanting to seize this particular day, you stand up and carefully but methodically try to navigate yourself into the other room, where your anti-seizure Ativan awaits.  Every step you take, you realize that you’re giving any tables or sharp objects you pass a wide berth, so that if you suddenly drop and hit the floor you’re not going to re-crack open your skull.  Or poke your eye (or anything else) out.  You have to be careful when you’re dancing on a smoothie— you have to be careful until you get your body somewhere safe.

Somewhere safe is where I got myself last night around 7 o’clock when I picked up my phone and started typing out the words that follow.  I barely remember any of this (Ativan has some very impressive amnesic side effects), but this is what I wrote…

********

IT GETS A LITTLE HARD TO PLAN ANYTHING when just when you’re starting to let yourself think that you might be starting to feel better, you go and start to feel like you’re going to have a seizure and have to cancel some plans and lie on the couch and take a few pills and text a few friends to alert them of a potential Friday Night Lights Out.  (I did just feel like I was maybe going to have a seizure, and I did just lie on the couch and take a few Ativan and text a few friends.  I’m OK now though, so don’t worry.)

But even though I AM OK now, it did get me thinking about these seizures.  Despite the fact that they’re controllable and not even (anymore) a sign of having lots of cancer in my brain, the smoothies and hints of seizures are still very powerful in what they represent: sudden death reminders of how close I am (and have been) to suddenly dying.

So rather than just feeling weird and kinda funky and even somewhat interesting (which is how the smoothies really feel– in other words not all that bad), put into context even just the slightest hint of one washes over my brain now like this wave of terror, as if to say “EVERYTHING YOU HAVE AND KNOW IS THIS CLOSE TO JUST COMPLETELY DISINTEGRATING AND DISAPPEARING INTO NOTHING.  SO DEAL WITH THAT.”

It’s unignorable, because it reminds me of the stakes.

And it reminds me now that I am actually afraid.

The more I am able to embrace life and being alive, the more I FEEL everything that I’m at risk of losing.

And so even the whole getting better thing has its own personal dark side: it just means there’s more now to take away from me.

I skirted death once (twice?), which was an original and interesting and deeply engaging experience.  But now that I’ve learned what that’s like, maybe now  the fun and freshness of feeling like you’re gonna die has faded a bit.  Maybe now it’s just scary.  Like it’s supposed to be.  Or at least like everyone always says it is.

I miss the not being afraid part.

Especially because now, as I’m starting to feel better, being afraid makes me afraid to invest more in my life, to allow myself to feel even MORE better.  Since that will just give me even more to lose.  I’ve come to terms with losing everything that I have right now.  I came to terms with that a year ago.  But what if I suddenly fall in love?  Then I also have to deal with the fear of losing that.  What if the Eagles start the season 2-0?  Then I have to live with the fear that they make it to the Super Bowl and I don’t.

With this perspective, every blessing becomes a curse.  And that’s a hard thing to work through, when promise and hope can leave you with more fear and pain.

But wait, this is the goddamn Brain Chancery.  If I know anything about the tone of this blog, it’s that it inevitably ends on an upbeat note.  And it usually does because there usually is one.  It’s just up to me to seek it out, to see it, and to choose to focus on it.

[ DRAMATIC PAUSE…. ]

I will not be swayed by fear.  Or at least I won’t be swayed by fear any more than the amount that nudges me safely and softly down on the couch, in case I do have a seizure.  I’ll be swayed exactly that much by fear, but no more.

And here I am on that couch, and I am safe.  And I’m not unhappy, even though I was feeling truly and honestly afraid just two minutes ago.

I’m not unhappy right now, because even if I do at some point lose everything, until the exact moment that that happens I am still surrounded by it.  By ALL of that everything that I love and that I know and that I want and that I might (will) some day lose.

But while I still do have all of that everything… boy does it feel amazing.

Or maybe that’s the Ativan talking.

Maybe I should have gone for a jog instead of almost having a seizure.

But then I never would have written this blog post.

Maybe I’ll go for a jog right now.

One thought on “SEIZING FRIDAYS: The Inconvenient Truth About Smoothies

  1. I want to write words to insulate you from being afraid; I want you to be free of the emotional and intellectual side effects of your encounter with the Dread GBM Brain Cancer. You’ve made your way through the GBM minefield amazingly (word chosen with consideration of your admonition against using it frivolously) well. You truly seem to find and grab onto the joyous parts of every shitty by-product of brain cancer’s residency in your life. It’s a kind of talent, or magic, or maybe just extreme mental prowess. Whatever it is, it’s a gift your wield with great skill.

    Your descriptions of the simultaneous presence of joy and terror in the life you get to live now gets very close to sublime, and is almost always inspirational– not like a Hallmark card, or a carved wall plaque– but in the word’s original sense. Your writing breathes something over and into the aspects of your life with/despite cancer. When you share your written meditations about that process, your words breathe that same thing into all of us.

    I think fear is an inevitable consequence of being fully awake. Sudden ends are part of the deal for everyone, either by wayward bus, brain explosion, heart failure, gun shot, or some other last experience on a long list of life-stopping events. GBM comes with really icky odds, but odds are just probability, not destiny. Still, with those odds, I think it must be hard to ever rest, and maybe that makes you more wide awake than is comfortable (maybe it’s a little like mental insomnia?) – And, being awake guarantees you’ll see more, feel more, think more, and….hurt/fear more. I’m not sure you’ll ever get to go back to what it was like before, as long as GBM remains the biggest, baddest cancer on the block.

    Please know that you are sent thoughts and hopes of strength and healing and courage, from folks known and unknown. And remember, you have the magic ability to turn fear into words of power and beauty.

    love,
    Kathleen

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