Pulling the Plug

PEOPLE.

Today was sort of epic.

Scratch the “sort of” part.

THIS happened:

You know what’s NOT under that gauze?

A feeding tube, that’s what!

(Also, I just bared my midriff on a public forum…does that make me a reality tv star now?!?)

People. I pulled the plug!

Well…if we are being technical, I didn’t do the actual pulling, but work with me here.

It’s a bit confusing, as medically speaking, I don’t really have anything even remotely resembling a clean bill of health. That being said, I haven’t used the tube for nourishment in about a year and a half (woop!), it’s chronically angry and inflamed, and it poses a big infection risk for my upcoming surgery (more about that in a sec). 

Really the only difference between now and three years ago, is that I have figured out how to nourish my body.

I know, I know - it’s shocking, really! They told me to eat only broth, Ensure, Carnation instant breakfast and mashed potatoes, and I plummeted 30 lbs. Can you believe it?!?

(Really Microsoft Word, you need to invent a sarcasm font. I’d use it daily)

My diet now is certainly limited (understatement of the century), but it nursed me back from “failure to thrive” land and enabled me to say ciao to my little friend the feeding tube earlier today. So for that, I feel I owe a personal, heartfelt thank you to the indomitable spirit of the sweet potato, and the ferocious hum of my Breville juicer. Thanks pals.

The only downside of today’s epically fantastic plug pulling is the fact that the replacement tube that came in the mail a few months ago is...prepare yourself…glow in the dark.

Yep. Glow. In. The. Dark.

They now make feeding tubes glow in the dark, "to ease the burden of nighttime feedings.”

(And yes, don’t think it didn’t cross my mind to change my tubes last night so I could enjoy one night as a glow in the dark 31 year old adult…hellooooo Halloween costume!)

Also notable, can we discuss how much more room I’m going to have under my bathroom sink now?!?

In other news, my cardiologist and I are in a fight.

Next Wednesday I’m having a little heart makeover - catheter ablation and pacemaker surgery.

(Some people go to the spa for a makeover, others to the hospital…totally normal. I wonder if I'll wake up with cucumbers on my eyes?)

But here is my beef: my cardiologist won’t let me bedazzle my pacemaker prior to surgery.

Um, hello! How amazing would it be to get an X-ray with a bedazzled pacemaker???

Can we say BLING!?

But alas, he stands firm in his denial of said bedazzlement. Something about hygiene.

Lame.

I also requested a laser that would shoot off beams through my skin every time the pacemaker fired.

Fireworks all the time! Who doesn’t love the Fourth of July year round!?

No such luck.

On the plus side, the whole "permanent" nature of a pacemaker gives me time to think. In 7-10 years when that little heart robot needs to be replaced? 

Rest assured, friends...I'll be ready.

Dancing with the Dragons

A few years ago when I first went out on disability, a dear friend gave me a stack of some of her favorite young adult books to read. I read them all, and being the rockstar literary agent that she is, they were all absolutely perfect for me. I read two of them several times.

One of those books was Donna Cooner’s Skinny. If you haven’t read it, please pause in the reading of this blog post and get cracking. It’s incredible. And brilliant. And inspiring. And…just go read it now.

(No really, skedaddle!)

The other was The Fault in Our Stars.

I devoured John Green’s masterpiece the way you hug a friend after a long time apart. It was that feeling as if the book had been written just for me, and I held on page after page, again and again.

It wasn’t written just for me in the subject matter, and it wasn’t written for me in the age range.

(I often think I can still blend in with the “young” crowd…until I actually spend time with them. Married. In bed at 9:00. Decidedly non-angsty. In my 30's?)

Anyway.

The book is often labeled as a teen drama about two kids with cancer, and yes, that is the subject matter.

But it’s not the point of the book. At least not to me.

The book is about love, and life, and the true gift that it is to live, and breathe, and walk this beautiful world for as long as we are able.

John Green’s language is pure, and honest and so very raw. 

These words, my friends, are so very, painfully, true.

Pain demands to be felt. You cannot out run it, nor can you pretend it’s not there.

You can try, sure, we’ve all tried to ignore moments of pain. But sooner or later, pain comes banging down your door and overstays its welcome, like the most oblivious houseguest of all time.

A few months ago, my neurologist ordered a whole long litany of neurological and cognitive functioning tests. As soon as I finished them, I felt defeated. They had been hard - even harder then I imagined when my doctor initially asked about my memory, attention, and processing.

But it’s one thing to know these things in your head. It’s one thing to find your phone in your shoe rack, and open 18 windows in your browser in 10 minutes, and forget the names of people you have known for years. You think that you are just stressed and tired, and maybe this is just what happens in your 30’s? 

Maybe everyone switches the beginning of words all the tamn dime?

It’s quite another to see it on paper.

My neurologist didn’t even want to show me the results. 

My brain may not be in contention for a Rhodes Scholarship anytime soon, but I understood enough to know that she wasn’t hiding the paper because my results were top-of-the-charts awesome.

At first I thought that maybe I had been like this my entire life, and that I’d been adapting all of this time. I think humans have an incredible capacity to adapt to life as they know it, and for a fleeting moment I thought that maybe that was true for me. So my processing wasn’t the best…maybe that’s why I’m more right brained anyway!

Instead of smiling, and indulging me in some sort of art and music related delight, my neurologist sat down in the chair beside me.

She took my hand, and gently sighed.

“No honey, with scores like these, you wouldn’t have graduated from college.”

Oh.

I’m sure she said other things too, but my less-than-fantastically-functional mind went completely blank.

I’m going to go out on a limb here and wager a good guess that my brain functioning showing steady decline is probably not something I should use to beef up my resume.

Extensive knowledge of medical testing? Yes.

Significant decline in cognitive function? Ixnay.

To be honest, my first emotion was embarrassment. Truth be told, I was mortified. 

How can I admit this to my friends and family? They are all smart, inventive, and driven individuals…how will I fit in? 

How can I tell my dear, sweet husband that while our friends are having babies and climbing mountains, I recently had to pull a piece of mail out of the recycling bin to remember our house number?

It was as if an imaginary force (also known as the mysterious minions that reside within the confines of my body) had taken me by the invisible suspenders, and thrown me like a shot put away from my family and friends. As if the isolation that was already there had been doubled, in a matter of seconds. 

So I did my best to stuff it down. To push it into the far confines of my soul and continue on. Just because my daily existence closely resembled herding a litter of kittens, didn’t mean anything had to change, right?

Make that herding a litter of kittens with a seriously intense case of fleas.

Anyway.

This didn’t have to hurt. It shouldn’t hurt.

(I really do think the word “should” needs to be deleted from our vocabularies. It gets you nowhere but mental angst…just saying.)

But the thing about pain…it demands to be felt.

It won’t take no for an answer. It has all the persistence of a spider building its web, and none of Charlotte’s charm.

So I begrudgingly felt it. I opened my doors and let it wash over me in strange, emotional waves. And after awhile, I expected the waves to slow down, and maybe to stop, but like a bad case of poison ivy, it just wouldn't go away. 

I felt it, I'm feeling it…and no matter how many times I stamp its passport, it won’t leave customs.

So I’ve been noodling, as I do, for quite some time.

And today in my yoga class, in the middle of a balance pose (flamingo, to be exact), my teacher mentioned something about fear.

I believe it was in reference to the fear of falling…but in that moment it hit me like a ton of bricks.

I am not just in pain. I am overcome with pure, honest, extraordinarily raw fear.

Huh.

Perhaps I should stand in flamingo pose more often.

My brain is in decline, and I’m terrified.

...

There, I said it. 

It's out there.
I'm still in one piece.

And to be honest? I feel better.
There's something about giving your fear a voice that is oddly cathartic.

I think fear can be helpful, and revealing, and altogether healthy for a time...but I also think ultimately we get to decide whether we will wear our fear like an exotic accessory, or a soaking wet sweatsuit.

And we all know, I prefer the bedazzlement.

I am scared, yes.

But I will not let my fear define me, nor will I let it chase me into a rabbit hole of darkness.

My mind may be going, but my heart and my spirit are not, and I have a lot more living and laughing and loving to do on this beautiful planet.

So guess what, world?

I’m scared.

But stored up fears do not strengthen us, they only break us down, and I have many more adventures that lie ahead.

I said it.

It's out there.

I'm dancing with the dragons, and I'm going to be okay.