Tuesday, July 30, 2019

Post Mortem

Death - most people fear it - think it's the worst thing that can happen.

But for me, with my chronic illness, it's no longer death I fear; it's increasingly limited life.

When I first got sick, I was frightened, but I had hope.

Hope that the medical community would fix me.

Hope that this or that med would help me.

Hope that God would heal me.

Hope that, if nothing else, I wouldn't get worse.

I no longer have any of those hopes.

What do I have?

Ever increasing disability.

The one thing I feared and fear more than anything else.

A prisoner in my own, declining body.

A victim of my own ignorance, the ignorance of my doctors; a victim of Big Pharma, and of poor choices.

Over a period of 4 weeks, I was given 6 (unnecessary) antibiotics, all of which are known to cause mitochondrial DNA damage; these meds were paired with counterindicated meds.

And I had no idea.

So I let them do it.

And now I have a degenerative acquired mitochondrial disease that's impervious to medications and insidious in its actions.

It's destroying my nerves; it's taking my hearing. My vision could be forfeit.

Most of my hair fell out. I am in constant pain.

Those body parts made of collagen? My joints and tendons? Disintegrating.

Did you know your rib cage can actually hurt? Mine has for 2+ years.

Antibiotics took my ability to have children. They destroyed my thyroid.

I was a writer...but the brain fog is taking my words.

The worst is probably the neuropathy - if you can't feel anything, then all you feel is sorrow.

I am overcome by my sorrow.

I have been sick for 4 years. Pretty much exactly. And in that time, I have watched, helpless and hopeless, as one by one the dominoes of my healthy body fell.

I can no longer feel my feet or my hands. Or my position in space.

I can still feel the pain though.

Ain't that a bitch?

I'm developing trigeminal neuralgia. And my hearing continues to decline.

There's a daily headache now. And I can't sleep.

Constant tooth pain, but I can't go to the dentist. When he filled a cavity last year, the double dose of novocain he gave me didn't numb the pain.

Did I mention drugs don't work on me anymore?

I cannot adequately describe the terror that is living a body that you can actually feel dying.

Having constant dry eye, throat and nose so bad you actually bleed.

What I have basically mimics having MS, rheumatoid arthritis, Sjogrens and hypothyroidism all at once.

It's a nightmare from which I cannot awake.

And one from which I cannot escape into sleep.

In my heart of hearts I know that I am dying.

Dying slowly and painfully, which is really the worst kind of death.

And there's nothing they can do.

They killed me in 2015...I'm just taking my sweet time about getting there.

There are others like me, but we are few and ignored.

We'll die - early - robbed of decades of life and experiences.

I have a beautiful husband, home, and dog. And I cannot give them everything I want to give them. I cannot be for them who I want to be - which is just pre 2015 me.

What happened to me was the result of greed - Big Pharma greed.

And ignorance. Doctors don't know what they're prescribing or how it works.

And lies. Lies were told to get me in the position I was placed in to receive those meds. Lies were told and facts were ignored.

And my life is the price that will be paid.

I wonder how long I have left sometimes. But most of the time I just cry for my poor, diseased body and the health that I lost.

Grieving.

We do it for death.

But I am grieving while living.

Every day is a mini death - the loss of yet another vital function.

And I don't know how to cope.

I often dissociate - feel as if I am watching myself from outside myself.

Watching and mourning what's happening. But feeling as if it's happening to someone else. Because this simply CANNOT be happening to me.

I reach out to a few others who suffer. There is some comfort in knowing you are not alone. But that comfort last moments. And the pain never relents.

I marvel at the resilience of some others - how they endure despite overwhelming odds.

Many of these people lean heavily on faith - on the idea that there's a heaven, where they will once again be whole.

But I haven't the benefit of that belief.

Chalk it up to yet another thing I've lost in this process...

As I think about the limited time I have left, I consider what legacy I want to leave.

Sadly, I don't know how to shoulder that burden either.

I'd love to say I was a good friend, a defender of justice, a light - however small - in the darkness.

But I don't see any light anymore.

I'd give just about anything to see some light - to have some hope, however small.

To think help is just around the corner, so long as I hold on...

But I'm a dead man walking.

Friday, July 12, 2019

Madison

“Dead people receive more flowers than the living ones because regret is stronger than gratitude.” ― Anne Frank

When my sister died in July of 2007, she went from being someone I loved who was frequently on my mind, to someone I lost, whose memory I could not escape, even in my nightmares. Many's the morning I'd wake, having dreamt I was chasing her - down streets, through malls and places we'd been. She'd run, and, just when I'd give up hope of ever catching her, she'd stop, turn to look at me, and laugh, encouraging me to follow her.

I'm haunted...

Friends, give flowers now. Give phone calls. Give texts. GIVE TIME.

It's your most finite and most valuable resource. Guard it ferociously and gift it wisely.

Saturday, July 6, 2019

Surreal to see the shadows of your healthy life taunt you from your Netflix queue

My former "friends" on Stranger Things: why y'all don't come 'round no more?

We was close til I got sick; fair-weathers ducked out/side door

Can't believe these're the vestiges of what I fought so hard for

Thought we was love, in it for art but nah, you all just fame whores.

Friday, July 5, 2019

I don't think my family ever understood this about me.

If they had, maybe things would've been different.

Thursday, July 4, 2019

How I Holiday Cheer

I don't like the 4th of July. Never have. Fireworks (specifically, sudden, loud noises) scare me, and now that I no longer eat land meat, the enticing aromas are too much to bear.

Plus Americana paraphernalia is just ugly. FIGHT ME...

Anyway, about 7 or 8 (hell I dunno when EXACTLY it was) years ago, I went on a quest to tackle all my fears. Fireworks was a big one, so I went to the Mall in DC for the fireworks display. The whole time, Jenny Bybee Hammock held my head in her lap, squashing my ears down so I'd hear it less...it's one of my favorite memories. Of me. Of her. Of us. What a remarkable human being, friend, and mother she is!

So, on my fav Independence Day, I walked away from fear and was embraced by love. May it be the same for every one of you. Happy 4th, y'all.

Monday, July 1, 2019

Fall

I fall

from afar

so I can invent

who you are,

what you say,

how we spar.

Force you to fall

with me - hard.

Down deep I know

it ain't you

just your face

the soul I drew

Pen and pad

who you should be

could be

to be with me.

I made you

shade's where I placed you

control you

dream at night that I could hold you.

I told you

but you ain't hear

cuz your ears - not near

not even close.

You're out there

I'm in here

feelin' morose

cuz I love you

I mean I think I do.

That is

if you can love someone

you never knew

never blew

never screwed

up

Always said the right thing

can't trip up

In our best light

every night

never fight

unless it makes it right

and by right I mean perfect -

that kinda shit

you never get

cuz life

does not

allow for it.

Real people are flawed

But me?

I created a god.

I gave him your face.

and I gave him your name.

Both were there when I came

shame - less

But I woke up alone.

I always was

cuz

I created a god

and I gave him a script

but - the real you - you don't come with that shit.

And if I ever met

you

saw you with my eyes

instead of my mind

I'd just walk on by

because you cannot be

quite as perfect as he

and you'd never see

me

anyway.

Monday, June 24, 2019

I'm Jealous Of A Trans Woman

Saw a transgendered woman today and had 2 thoughts:

1. How TF is she so damned pretty? Like, she was born with a dick and STILL somehow managed to be prettier than me. Ugh. I am jealous, petty, and a bad person.

2. (More profoundly and, hopefully, redeemably) There are entire chapters - books even - of the human experience that I will never know or understand firsthand.

I've been straight and Christian, and I've been bi-sexual and Jewish, and I can tell you definitively that the entire world - how I experienced it and how it reacted to me - varied wildly depending on which of these identities fit me at the time.

To be clear, each designation actually WAS who I was at the time, so each felt genuine TO ME, but how the world reacted to and processed me was shockingly different. And the world's reaction to each designation then affected how I felt about the designation - and about myself.

Examples: I remember once in undergrad my girlfriend and I went out to eat with her dance team after her recital. Everyone was very nice. No rude "dyke" comments or anything like that. We weren't treated poorly. (Good job UGA circa 2001 BTW)

But we were treated as objects of interest. As we ate, the dancers stole glances our way. Not malicious glances, just "look at that exhibit in the zoo, isn't it strange/interesting?" glances.

When the check came, all eyes at the table dropped any pretense and just stared, waiting to see who - in a romantic relationship between two women - was expected to pay the bill.

Had I (or she) been a man, we would have been blissfully ignored.

As it was though, I was super uncomfortable.

And that's one lesson I learned about being a sexual minority - even if you are not met with hostility, you will be met with an uncomfortable amount of interest. For some, this is fine. Maybe those folks desire the opportunity to educate. But I don't. I just wanted to eat my damned pasta in peace.

Anonymity is a luxury afforded to all of those who fall within the categories of "normal" or "majority."

Contrary to the ludicrous belief that there's a War on Christmas, Christians in this country ARE NOT persecuted. Neither are heterosexuals. But when I stepped outside of those two norms, the reactions I received were so astonishingly different that they forever changed my (previously much more limited) worldview.

It also affected how I felt about my own place on this planet.

I've been a performer all my life, so being in the spotlight wasn't a new feeling - but in my Christian hetero life, I basked when I chose and enjoyed anonymity the rest of the time.

Minorities, I found, don't have that option.

When Christina and I were together, the spotlight shone 24/7 whether I wanted it to or not...and suddenly everything I did wasn't just something Erin did. It was something BISEXUAL Erin did. Or maybe all bisexuals did. Like I was suddenly an example of/ambassador for/god-help-me-not-an-embarrassment-to-bisexuals-of-all-stripes-everywhere.

It was an enormous burden, and I was honestly relieved when Christina and I ended things and I started dating men again...

...

By this time I was already questioning my Christianity (had been since adolescence) and my political affiliation (raised Republican Conservative). Neither felt like a fit - and the "squeeze" of those identities would grow to choke me over the next few years.

So I pried them off, and sought something that fit me better.

I wanted to feel like I could breathe.

In 2011, I finally got a gulp of air. Judaism provided the oxygen that Christianity had siphoned from the room.

My conversion journey is the subject for a book, surely, but for these purposes I will tell you that the more I pursued it - the more I changed and the more I allowed it to change me - the world once again reshaped itself, in some cases closer aligning with and in others, utterly shunning me.

My experiences as part of a marginalized people opened my eyes to the systemic barriers still rigidly in place, the struggles that come with "difference," the ludicrous notions of "wars" on majority groups and the fucking nonsense that is "All Lives Matter."

I finally saw what people meant when they said they were being denied a place at the table.

As a minority, I have been held accountable for every decision made (or not made) by Jews worldwide with whom I have no other affiliation.

I have been hated for that affiliation.

And defended for it.

I can only assume this experience in many ways echoes the experiences of other religious, racial, and cultural minorities.

I imagine it's true for the stunningly beautiful trans woman I saw and so envied.

I am grappling with that envy.

Because now I recognize that envy for what it is and from whence it came:

1. My own insecurities.

2. My own feelings of entitlement.

As a woman born with female genitalia, I somehow feel entitled to be more aesthetically pleasing than someone born with male genitalia. AND HOW FUCKED UP IS THAT?

To my credit, I can now say I recognize the shortcomings of my initial, gut reaction.

I can look at myself critically and ask, "Why do you feel this way? Is it good/appropriate to feel this way? And if not, how do I change the way I feel?"

And I am very proud of myself for having at least that level of self reflection. Some folks I know never even get that far...

And that's something that my own life journey and experiences as a person of minority status have taught me - how to have empathy for other people. How to check my own privilege and meet people at their level. How compassion is a more desirable character trait than judgement (which is saying something, as, when I was at UGA and dating Christina, I was an ENFJ).

I should wrap this up. It's late and these Raisinettes aren't gonna eat themselves...but I just wanted to put it out there that there are entire worlds that you and I will never - even with the best of intentions - know.

I will never know the world of a Muslim woman, or a Syrian refugee fleeing civil war. I will never see the world through the eyes of a black, brown, or Asian person. I'll never know what it is to be a man of any color or creed.

I do wish I could though.

Reincarnation - can't say I believe in it - but having everyone complete a few cycles sounds like an excellent idea: a karmic way of ensuring we all walk a mile in another's shoes.

I think it'd do us all some good.