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.