clockwork

accountability post #2

♤

baby Ellie died.

it was one of the first posts i saw when i joined the transplant group on FB and its one of the main reasons i keep going back knowing i shouldn't.

Baby Ellie didn't make it to 3 years old. She was a transplant patient who was diagnosed with a rare genetic deformity. There have only been 88 known cases.

One of them was Ellie.

Her smile struck me first but there was no getting around her lemon lime bilirubin riddled skin. No one in the transplant group had ever seen jaundice this severe and everyone knew what it meant and everyone prayed for a goddamn miracle just this once.

Baby Ellie didn't get a miracle.

I met her in March and she smiled in every picture her mom posted until the one before she died. And we all knew, even though no one would say as much, the messages sending prayers and strength were much different than the “you got this” vibe the grouo usually has.

In her baby blues we saw the mirror of the dying that forces anyone making eye contact to inventory their own mortality.

If you've watched someone slip away, you know what I'm talking about.

Ellie slipped away on July 4th and gained independence from her suffering.

But for four months she smiled at me from my phone screen and I thought to myself “if a baby can smile through this body horror then I have no excuse”, and even though she's gone I'm keeping that message with me.

I just wish there had been a miracle left for Ellie.

But there will be no miracles here.

Ellie is dead.

♤

I think I might be getting more sick.

the apathy is back.

i can't bring myself to care about anything except being hurt and angry and that's so antithetical to who i am.

i missed the deadline for SF4, only managed a submission due to the pressure of an extended deadline and sheer brute force of will. i hate the collage. it isn't finished. i just needed to be done with it.

i used to do a lot of collages. word confetti prose. i was trying to get back into it again after finding a bunch of my old magazines, but all I've managed to do is snip and clip and file away bits and pieces of creativity that will never see the light of day.

Mostly I am tired.

I don't remember why I'm writing this, it's hard to find the thread again when you don't care.

Apathy. Yes.

I'm getting worse.

Tomorrow I'll call the doctor but only because I'm writing this and posting it.

I'm not sending it to subscribers.

Its fine if folks read this but accountability posts are for me.

I don't really care about fulfilling my own expectations, I'm not very used to having any, but if I tell other people I'm going to do something I have to do it or the humiliation is unbearable.

Shoulda called weeks ago.

It's hard.

It's very hard to care when you don't care, and it's even harder to reach for a reason when you're reaching alone.

I know.

I'm not entirely alone.

But I could still drop out of this race at any time and no one would know until it was too late.

Isn't that.. something.

well.

it's something I won't entertain for the time being, because I'm here and I'm writing and there are people who care as much as they're reasonably able and isn't that all we can ask from this impossible reality that's trained us to be so miserably selfish?

to care as much as we're able?

♤

on the drive back to Maine I missed my estranged husband for the first time. it was so disturbing my skin crawls just thinking about it. i sobbed thinking about how much I wanted him to hold me and that man had hardly touched me in five years by the time I left him.

i know it's projection. desperation. brain damage.

I don't miss him now. It was fleeting, a few minutes at most.

it still happened.

i'm scared of becoming weak. i'm scared i'll tell him i'm sick. i'm scared he'll see an opportunity to save the day and reclaim his family and I'm scared i'll let him because i'm so goddamn tired. most of all i'm scared of how likely this scenario is becoming because I can feel my resolve melting away every time I wake up to this reality.

but I'm trying.

that's why I'm writing this ridiculous post that I'm not going to proof read because I'll end up deleting it.

accountability.

I will call the doctor tomorrow and let her know the encephalopathy is worse. i will not keep putting it off.

suffering is never forever.

♤