Thursday, February 8, 2018

Love Letter

My work as a journalist was the most meaningful of my life, and returning to that profession remains a long-term goal.

Yesterday I saw "The Post," and, while not a perfect film, it touched on the invaluable role a free press plays in our democracy.

One of the few lectures I remember clearly from my days at UGA was about how the Press was such an essential force as to warrant placement in The First Amendment, and what an honor and a responsibility that was. Each day, as I watch my Reuters, or listen to my BBC and NPR, I feel a deep longing. Long ago I learned what it's like to miss a PERSON. But it continues to surprise me how much I miss a PROFESSION.

I learned so much as a journalist. Every day I saw my job (at the macro level anyway) as interviewing experts in their fields, to learn more about those fields, and report the information back to the masses. I was a sharer. I was an educator. And all the while I was being educated daily on things I hadn't previously known.

Those were the most fulfilling days of my life.

I'm not sure what I am trying to say... and I see the irony in writing about being a communications professional who does not know how to effectively communicate what she's thinking...

I guess I said what I meant to say in my first sentence here.

If God or the Fates or a medical breakthrough or sheer, dumb luck decides to heal me one day, it is my fervent hope I can return to the job I loved - the job that gave me a continuing education, a sense of purpose, an outlet.

This is my love letter to Journalism, to education, to the pursuit of truth.

And I'm sharing it with you.

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.

Gratitude.

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.

Why?

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

mightily

Hard knowing your TBI was caused

medicinally.

Hard finding a doc to deal with it

medically

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

correctly.

I pay with my ears

that ring incessantly.

I pay in daily pain.

I pay with a body that doesn't digest

properly

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

moments.

And I want to share those moments

with you.

Monday, December 4, 2017

The Fighting Irish - in thanks to Mary Beth

I never met a bully by the flagpole.

Was never sent home from school for throwing a punch.

And, while I did slap a boy in my sixth grade class for making fun of my earrings, I've never been in what one might call a "fight."

But that doesn't stop me from beating the hell out of myself every day...

Mistakes. In my life I've made much more than my fair share.

What a fancy fuck-up am I!

If self-flagellation were a sport, I'd have achieved Hall of Fame status by age 8.

So imagine what it is for me to know that, had I not made mistakes, I'd be healthy now.

Someone fetch the cat-o-nine-tails.

It's time for another session...

Or, at least, it was...until I received a call from Mary Beth.

You see, Mary Beth's daughter (we'll call her "Sarah") has a mitochondrial disease...

one that only manifested itself after Mary Beth - against her better judgement - allowed Sarah to receive a flu shot at age 11.

Now, Mary Beth is not an anti-vaxxer. In fact, she's a pediatric nurse.

But Sarah had always reacted negatively to vaccines - running high fevers and being sick for a few days. Nothing too serious, but definitely a strong enough reaction that Mary Beth decided not to get Sarah any of the optional shots.

So when Sarah decided she wanted to belong to a club that required she receive the flu vaccine, Mary Beth wasn't fully on board. She decided to do some research and consult with Sarah's pediatrician. Everything she found told her Sarah should be fine. So Mary Beth acquiesced to the vaccine.

The reaction was immediate: Sarah went from being a runner on the Varsity squad (when she was only in middle school!) to being unable to walk down the hall unassisted. Her cognition was severely affected. Her healthy, young body crumpled like paper. She was disabled in an instant.

But - before you drawn yourself in woe - know this: Sarah didn't self-flagellate.

SHE ADAPTED.

Sarah didn't wallow in self-pity.

SHE ADAPTED.

Sarah didn't use what little energy she had to ensure her place next to me in the Paying-For-Poor-Choices Hall of Fame.

Nope.

SARAH - that amazing and mighty girl - ADAPTED.

But what about Mary Beth?

After all, she'd known better.

That little voice in the back of her head had told her it was a bad idea.

But she'd listened to the research and the doctors.

She trusted institutions over her gut, to devastating consequences.

Mary Beth blamed herself.

At first.

Over time, watching Sarah's adaptations, asking Sarah, "Aren't you mad? Where's your anger?" and getting a calm response, Mary Beth saw that such anger and resentment were wasted.

That energy was wasted.

And if there is one thing patients and families dealing with mitochondrial disease don't need to waste, it's precious, precious energy.

So Mary Beth stopped being angry.

She stopped beating herself up for choices she made that she can not and will not ever be able to change.

SHE ADAPTED.

I should do likewise.

Because I cannot win the fight with FQAD if I am exhausted, bloody and bruised from wrestling with myself.

And I DO intend to beat FQAD.

I'll fight that fucker at the flagpole.

Friday, November 3, 2017

Please Excuse My Dear Aunt Sally

Empirical assumption: people don't like to be wrong.

It's uncomfortable.

It's embarrassing.

It sucks.

I, personally, would rather do a host of undesirable things - the dishes immediately comes to mind - than be publicly exposed as wrong about something. To avoid that sucker-punch-to-the-gut feeling that comes with error, I've developed a list of go-to preventative measures:

1. do copious research

2. have sources on lock

3. "when-in-doubt, shut-yo-mouth"

But even this is not a no-fail system.

So, inevitably, I'm wrong sometimes.

And it sticks in my craw - no lie - for years.

While I wish I were kidding, I still remember math problems I missed on high school exams.

The self-flogging over decades-old mistakes is ludicrous.

And so... I plan to stop. Or - let's be real here - at least change the way I respond to being wrong.

Yesterday, I was objectively and publicly wrong about something.

I've mentally harped on it incessantly, and, in doing so have noticed two things:

1. This has drained my energy, and made me feel bad.

2. I will not make that same mistake again, so help me God.

My epiphany lies in 2.

Because I think it's the remedy to the mental masochism that is 1.

I - and dare I say WE, as the human race - learn. from. mistakes.

Indeed, historically, mistakes are the greatest of teachers.

Through mistakes we learn how to adjust course and avoid similar, future pitfalls.

Y'all - mistakes are blessings in disguise!

(I mean, ya know, sorta. There are extreme examples but we're talking day-to-day wrongness here, not nuclear code wrongness.)

My most profound growth has always come from making mistakes. Generally, the bigger the mistake, the bigger the growth.

Armed with this Christopher-Columbus-esque "discovery," I plan on handling mistakes differently going forward.

While I likely cannot control the sour-gut feeling, I CAN control what I do about it.

I can DECIDE to make each mistake a learning opp. I can CHOOSE to see each misstep as a "discovery" of the Americas, even though I was aiming for Asia.

In short, I can learn from the mistake of beating myself up for making mistakes!

Hooray!

I feel better already.

Thursday, November 2, 2017

Carlos Correa and What It Means To Be With Someone "Special"

Baseball: I personally couldn't care less. But for others, like my husband, the game's Greats are superstars. And who doesn't want to be a superstar?

So last night, at the conclusion of The World Series, Carlos Correa's game performance and subsequent proposal got me contemplatin' - what are the potential pros and cons of dating/marrying someone society deems "special"?

In my lifetime, I've dated three people who could claim a certain amount of fame - a musician, an actor, and a politician. In each case, my mate's respective "special" status afforded me some undeniable perks: VIP entry to events/clubs, free swag, personal exposure.

But each also brought equally undeniable drawbacks: peer pressure, questionably high levels of compromise, and again, personal exposure.

In short, for every free box or court-side seat I received, every line I skipped, every red carpet I walked, I got a disproportionate dose of inappropriate remarks: "Oh you're so lucky to be dating HIM. I'd do anything to get next to HIM.," judgmental stares, backstabby friend-to-your-face, Judas-at-your-back nonsense, and, perhaps most surprisingly, personal pressure to conform.

When I was in these relationships, I unwittingly bought into some of the hype. I WAS lucky to be with HIM. I WAS special BECAUSE I GOT TO BE WITH HIM. And therefore, when I was unhappy with the relationship or his behavior, the problem was with ME (the flawed, not famous one), and not with HIM. (Spoiler alert- in each case, much of the problem was, in fact, WITH HIM.)

Because of these beliefs and the pressures I faced (both from within and from society), I found myself compromising my thoughts, my opinions, my desires, to better align with my "superior" significant other.

Every disagreement lead to panic and my own, self-imposed gaslighting - "Will Mr. Special leave me if I continue to assert myself? I better take a more subservient approach just in case..."

Every deal-breaker was suddenly up for grabs - "This is the last straw! I should definitely not tolerate this behavior! Or should I? I mean, everybody loves Mr. Special. Am I the one overreacting here?"

The constant second-guessing of my person and values (again, largely imposed by myself and society - though occasionally reinforced by Mr. Special), left me feeling drained, on edge and, often, slightly nuts.

My behavior would then echo my mental chaos.

By about month three, I'd be close to daily mental breakdown.

But in two of my three SPECIAL relationships, this hell wasn't enough to break the bond. In two of the three, I managed to stretch the dysfunction out into one and two years, respectively.

It was a nightmare of my own making.

At least partly.

Now I think I should pause at this point to say, very clearly, I know absolutely nothing of Correa's relationship. The man could be The Second Coming, and his fiancee the very essence of Angel-on-Earth. They certainly look happy, and I wish them every happiness. I hope theirs is one for the ages, and, for all I know, it could be.

All I am saying is, watching the very sweet proposal at the conclusion of Game 7 got me thinking about my own past, and how difficult it was to be in a relationship with someone the world wanted to worship. Especially as I WAS NOT someone the world wanted to worship.

And I'd say that therein lies the key - that so long as the couple is on the same social footing, perhaps the pressure is less. Perhaps, when both people are A-list and desired, some of that pressure goes away.

But I doubt it does.

Incessant eyes, constant scrutiny, and unending temptation have proved the demise for countless power couples. So I suppose the pressure is intense no matter how SPECIAL the pairing.

Relationships are hard. Throw fame and all its pitfalls into the mix, and I don't know how any of them survive.

Those that do must be SPECIAL.

And that's the kind of "special" I'd like to be.