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.


Sarah didn't wallow in self-pity.


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.


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.


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!


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.

Monday, October 30, 2017


It remains my belief

that true love never dies.

This thought

that once brought comfort

now carries only pain.

It means I'll never be rid of you

or truly whole again.

Wednesday, October 18, 2017

Those who can't do, teach

The adage that "those who can't do, teach" is hurtful and, in my case anyway, true.

At the risk of sounding immodest, I have impeccable taste.

I have almost a supernatural ability to spot real, raw talent in writing, acting, and film.

I can peg an up-and-coming actor or DP years before Hollywood gives him/her a project in which to shine.

I can demolish a bad script - tell you what to do to make it better - provide story and character analysis that's second to none.

And yet, when I go to put my own pen to paper, I come up woefully short.

The writing falls flat. The emotion, saccharin.

When I take the stage, my performance, though internally layered as an onion, doesn't translate to my limbs or face.

What I can see and teach so well to others I cannot seem to grasp for myself.

I can mold external clay, but internally I'm the artistic equivalent of a toddler's crayon drawing.

Colorful mess.

Thursday, October 12, 2017


To think

You think

You traded up

To know

that I



to know

You know

the inconsequence

of me.

Thursday, August 3, 2017

Pray it away

Since being stricken with Fluoroquinolone Associated Disability (FQAD) in 2015, I’ve had perpetually bruised knees – not from the illness, but from prostrating myself to my Higher Power, begging for a miracle.

Two years of disability – that’s 730 days – 730 days of begging, pleading, showing gratitude, asking for Divine answers, waiting for instructions from The Most High. Sometimes penitent, sometimes shouting, sometimes just sobbing, “Please, please, please…”

But apparently that’s just not enough for some people.

Indeed, if I am told by one more evangelical that I continue to be sick because I’m “just not praying hard enough,” I’m gonna be sick…er.

I know I am not alone in this. Almost every person I know with chronic illness has experienced it. “Just pray harder. God will heal you. You have to claim it.”

It’s insulting.

It’s hurtful.

And it’s wrong.

I get it. For those whose faith dictates that God “made the lame to walk and the blind to see,” nothing is impossible. Miracles occur everyday.

And you know what? Maybe they do. But that doesn’t mean that God has a miracle on the shelf for me, and that I need only ask Him (or Her) to take it down for all of this to go away. Sure, there’s no harm in asking. I ask at least every other day (if not every other minute).

But this whole “ask and ye shall receive” mentality from strangers, friends, or even family is toxic. Why?

1. It’s victim blaming. Instead of placing the “blame” for our illnesses where it belongs, it places the blame squarely on our shoulders. Don’t wanna be sick anymore? Just pray. As if miraculous healings can just be ordered via Holy Amazon.

2. It’s a misreading of every holy scripture of which I am aware. Just because God can do miracles, doesn’t mean everyone gets one. “You get a miracle! And YOU get a miracle! Everyone gets a miracle!” He’s not Oprah, for Heaven’s sake.

3. It’s nonsensical. We live in a world replete with suffering. Children get cancer, heart disease claims more than 600,000 US citizens a year, Zika is a thing. You really think all of these people – and their families and friends – didn’t think to pray and ask their respective Higher Powers for help? I guarantee you, they did.

So when the miracles don’t come through – when we remain sick or worse – what does that mean? For some, it means we’re meant to endure trials to become stronger, to learn lessons, to provide inspiration or comfort to the suffering. For others, it means we simply drew the short straw: some people live to be a healthy 100; some don’t. Tough break for us. But for others, especially those of the evangelical sort, I always get the same response: you must not be praying hard enough.

My illness is therefore linked to my faith, and I must be a spiritual slacker.

Nope, nope, nope. I refuse to bear this blame any longer.

Just because there are people on this planet that cannot conceive of a world full of senseless injustice doesn’t mean I or any other chronic illness warrior is to blame for the hardships we suffer. I’ll be damned (pun intended) if I continue to shoulder the blame of that accusatory belief system.

Does God continue to grant miracles? I’m sure. Will I continue to hope/pray for one? You bet. Can you add me to the prayer list at your church/temple/mosque/house of worship? Yes please.

But if you see me next week, and I’m still sick, please don’t pester me about how my continued suffering is a result of some personal, spiritual failing. It isn’t.

Instead, remember: “there but for the grace of God go I.”

And give thanks for your health. Because some of us would do anything – including pray every single day – to have ours back.