Tuesday, January 30, 2018

Resolution 2018

Rather than make a New Years resolution, I acted on a friend's advice and chose a word on which to focus.

My word for 2018 is "gratitude."


I've been sick for 2.5 years now.

That means 2.5 years of praying, begging, crying, hoping, being disappointed, devastated, and scared shitless.

There's not a day that goes by that I don't fear for my future and lament the health choices of my past.

Not a day passes where I don't actively miss my old self, and mourn what has become of my body and spirit.

It's been a miserable, terrifying slog.

But through this slog, I've realized I have not done myself any favors.

I have not improved my quality of life one bit by incessantly obsessing about my symptoms or beating myself up for the mistakes that were made that lead to my disability.

Much research has been done on the power of positive thinking.

And, while I do not believe a positive mindset will heal me of the TBI and bodily dysfunction caused by medical malpractice, I do know that the daily worry, fear, and anger I experience compounds the stress on my already overtaxed body.

So what's to be done?

Best I can figure, gratitude should be my cornerstone to combating my negative mindset.

Instead of lamenting what I can no longer do, I'm actively attempting to remind myself to be grateful for what I CAN still do.

Last week I watched a news segment on a man with ALS and his wife.

Inarguably, this couple had been handed a shit sandwich.

ALS is a debilitating disease and this young couple had to continuously adapt as the man lost more and more of his abilities.

Today, he is wheelchair- and bed-bound, and relies on a computer to speak for him.

And he and his wife couldn't be happier.

They have very little money, as his care is incredibly expensive. She has to do everything for him...

And yet, they are all smiles.

They enjoy spending their days together.

They paint together (He puts paint on the wheels of his wheelchair and maneuvers over canvas. They then sell his paintings to raise money for his care.)

Despite their obstacles, they have nothing negative to say about their life.

They don't cry. They laugh.

The happy faces beaming forth from my television show no fear.

Rather than waste one moment on fear, they fight for a cure. They're sure they will find one.

And...I find myself actually being jealous of this couple.

While watching this news segment, I turned to Scott.

"I'm doing this wrong," I say with tears in my eyes.

"This man is worse off than me. This couple has more challenges. But they're managing so well. I....need to do better. I WILL do better."

And that was that.


I'd love to say I've done a complete 180 since that broadcast.

But I've never been a very keen liar.

So here's the truth: I still lament what I've lost 55 minutes out of every hour. But I am making a conscious effort for those other 5 minutes to be grateful for the gifts I still possess.

Is it making a difference?

I don't know.

But it can't hurt...

And right now I'll even settle for "it can't hurt" - that's more than any other treatment option has been able to offer.


It's my new thing.

Thanks for reading.

I'm grateful you did.

Friday, January 19, 2018

For I Know The Plans I Have For You

Should you ever have a crisis in your life, it's pretty much guaranteed that at least one uber-religious friend or family member will point you to Jeremiah 29:11: "For I know the plans I have for you, says the Lord, Plans to prosper you and not to harm you. Plans to give you hope and a future."

Many take comfort in this verse, but it always bothered me.

For if God's plan was to prosper and not to harm me, then why was I always being...well...HARMED? Was something getting in the way of God's plan? Was it me!?!? **Enter the pangs of (now Jewish) guilt.**

Or, if it wasn't MY fault, was it someone else's? Which one of you bastards screwed up the awesome plans God had for me? Or did God do it? Did He have good plans for me but just got busy and shit hit the fan while He was off baking God Pies or something?

So I pretty much avoided this verse whenever I skidded into times of trouble. At best it brought guilt. At worst it brought anger and resentment.

But here's the thing - in the original Hebrew, the word translated now as "plans" is NOT "plans."

The word in Hebrew is more directly/better translated as "thoughts."

Substitute "thoughts" where "plans" usually is and ruminate on that for a minute.

I'll wait...

Have you done it yet?

Y'all - this difference opened up a WHOLE NEW WORLD for me.


Because in changing "plans" back to its original "thoughts," the verse takes on a new meaning.

The change means 1. God didn't have an awesome plan for me that I fucked up. I am off the hook!

2. You bastards didn't fuck it up either! You are off the hook.

3. God didn't screw up and forget about me while He was off making His #GodPies.

and 4. AND MOST IMPORTANTLY - It means that, when God thinks of me (hey y'all - GOD THINKS OF ME!), He thinks GOOD things!

That's right, despite the myriad of things I've done wrong - ALL OF WHICH HE KNOWS ABOUT - He still thinks well of me anyway. He still wants and hopes for good things for me regardless.

This is SO POWERFUL to me.

How many times, as flawed humans, do we secretly (or not so secretly) hope that those people who have wronged us would get hit by a train? Serves 'em right, I say! And those that REALLY hurt us? A GREAT, BIG TRAIN that backs up at least once to hit 'em a second time!

But not God.

Despite me (and you bastards) doing at least one thing every day that's out of line and should piss Him off, God still thinks GOOD things about me. And you.

Yes you! Even if you're a lowlife bastard who everyone else thinks should be run over repeatedly by the great big train.

I hope that makes you feel good - genuinely LOVED - inside.

And I hope it makes each of us think a little higher of and be a little kinder to each other, too.

Because if God can love you, you jerk bastard, I should at least try. And I hope you'll do the same for me.

L'chaim, y'all.

Wednesday, January 10, 2018

Dear Friends: Please forgive me

Dr. Friends -

Please forgive the long absence; I've been busy.

As you already know, there's a lot wrong with me.

For the past 2.5 years I've struggled


Hard knowing your TBI was caused


Hard finding a doc to deal with it


And that's if they even believe me.

Please forgive the long absence; I've been busy

With test after test to prove confidently

what I already know: that incompetence broke me

then charged me a fee.

I pay every day.

I pay with my sleep - or the lack of it, really.

I pay with my eyes, that no longer see


I pay with my ears

that ring incessantly.

I pay in daily pain.

I pay with a body that doesn't digest


the very nutrients that could save or heal me.

I spend my days hooked up to the IV

Just to see if maybe -

just maybe -

this time it will help.

Please forgive the long absence; I've been busy

Seeking out specialists

bringing them evidence

being met with arrogance

because they don't know.

Despite implied eminence

the doctors' benevolence

wears thin when they realize

they really don't know

how to manage my circumstance

or give me a second chance

at the health I had prior

to their colleague's mistakes.

Mistakes that should never, ever have happened.

But then I guess Life says

them's just the breaks.

So please forgive the long absence; I've been busy

but please know that I

do still need you beside me

because each day is harder

when faced all alone.

I want - no I need - to have you here with me

so even if Fate's set in stone

that I am never to sleep, or see

or hear as I once did

life can still have splendid


And I want to share those moments

with you.