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 (which is outside of our control. No one would choose to be sick if they didn’t have to be), 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.

Monday, July 17, 2017

Les Miserables (the Assault Master Card)

I have the (good?) fortune of living very near a Walgreens.

Today, while walking there on an errand, I had an experience - one with which I think many women can identify, and one I think most men should take a moment to consider.

On my route, I was passed by a young man (20-22 if I had to guess) in a very loud vehicle: you know the kind - cool in your teens, kinda silly in your 20s, what-a-complete-waste-of-money! Haven't-you-read-Dave-Ramsey?!? in your 30s.

Yeah, that kinda car.

Anyway, on the first pass, I didn't think much of it, aside from wishing some ill will on modified mufflers.

On the second pass, I was glad Mr. I-spend-my-income-on-stupid-car-modifications was leaving the neighborhood.

Good riddance.

But when I heard his car approaching a third time, a familiar fear rose quickly.

Ladies - you know this fear.

It's that alarm bell that sounds when "something's off." When there's the potential for danger. Specifically, male danger.

...

Now, it's important I pause in this moment to state a few things firmly.

1. Just as one's opinions on purposefully loud cars change with age - I mean, do you WANT permanent tinnitus? 'Cause that's what you're courtin' pal! - so, too, do opinions of male attention.

In my teens (and sometime into my 20s), I was flattered by the male gaze. After all, what's wrong with being wanted? What's the harm in men finding you desirable? Isn't that a GOOD thing?

But then life happened.

A couple of incidents of sexual assault happened.

And suddenly that gaze wasn't so much flattering as fear-inducing.

Would this gazer be a "good one" or a "bad one"? A gentleman or something subhuman?

Slowly, over time, that familiar, hungry gaze came to represent less "possibility for romance" and more "possibility for danger."

And danger, I learned, is best avoided.

2. Don't give me that lame excuse that "not all men"...

Why?

Because it's obvious.

It's also pointless.

Obviously not all men are rapists and murderers.

But it only takes one, and, as we live in a society that's as likely to blame my rape on what I was wearing and my murder on "whether or not I made him mad" as it is to blame the perpetrator, well - a girl's gotta be on her guard at all times.

Men, it is especially important that you understand this, as it will inform all that is to follow.

I've heard from more than one man that the male sex would like some insight into the mindset of women. Welp, consider this your sneak peak - but don't be surprised if you're...not-so-positively surprised.

...

As I heard him coming for a third pass, I distanced myself from the road.

"This way, if he wants to grab me, he'll have to get out of the car," I reason.

My back is to his approach.

I flinch as he passes.

But he does pass.

And I exhale.

I realize I have been holding my breath...

But it catches again in my throat as I see him ahead of me.

He's turning around in a driveway.

He's going to make his fourth pass.

Either he's lost or he's definitely tailing me.

I cross the other side of the road to put more distance between myself and him.

As he approaches, I put my left hand inside my purse.

"Don't let him see your diamonds. That may make the decision for him. And with your hand in your purse, he may be less likely to snatch it, if that's his aim."

He nears me - my heart pounds - HE'S STOPPING!

Instinctively, I take in the details of his face and car - if I have to file a police report later.

My body - jeweled hand in purse and all - goes rigid.

He speaks: "Hey beautiful. Need a ride?"

20s Erin - "He thinks I am beautiful! I haven't felt beautiful in two years!" Gratitude. Gratitude that collides, panicky, with 30s Erin - "Women who get in the car are never seen again. Is he close enough to grab me? REMEMBER THAT WOMAN IN ATHENS WHO WAS GRABBED FROM THE SIDE OF THE ROAD IN BROAD DAYLIGHT AND RAPED? AND SHE WAS A RUNNER! Quick! Think of escape routes!"

As with my experiences with sexual assault, I completely freeze. I am not clever, cool, or calm.

Instead, I am experiencing full on panic, but am rooted to the spot.

I stammer.

"Erm, no thank you," I bluster.

Be nice! Be polite! Don't want to piss him off! My mind warns.

"I'm just...getting some exercise."

I wave as if to tell him a friendly goodbye.

I don't know if I'm smiling.

I don't know much of anything except that I want to flee.

He gives me a nod and drives away...

...

As I make my way home, I keep vigilant, ears pricked in the event he comes back.

I struggle to both hurry home - not easy when you're disabled - and to come up with "game plans" in the event of worst-case-scenario.

A truck rumbles in the distance, and I jump.

Just two more blocks to go... ...

When I arrive home safely, my mind is a mess.

Again, gratitude washes over me - that I was called pretty, but mostly that I made it home alive.

And in this moment I am overcome with thoughts.

I marvel at the mind mush that has been created by what should be a relatively mundane experience.

In this moment, I realize (though probably not for the first time), that it is ridiculous that I am thinking these things - not because I am ridiculous (though there are certainly some that would desire to make me feel that way), but because this is what life is for a woman.

Men aren't forced, through life experiences or news reports, to have these fears.

If a woman pulls over to speak to a man, his thoughts don't immediately go to rape and murder.

He isn't frightened for his life.

He isn't recalling cautionary tales of other men who made mistakes in judgement to their own peril.

He isn't spending his afternoon wondering if what he wore was too revealing and therefore courting "the wrong kind of attention."

And, because men do not have these thoughts (straight men anyway. I have a feeling it may be a different story for gay men), they therefore are baffled or incensed that women have them.

"He complimented you! That should make you feel good! He didn't harm you in any way, geez!" And, "I think you're really overreacting."

Yeah.

Sure.

OF COURSE YOU DO.

Because - AGAIN - this shit is never going to happen to you.

If I saw you on the side of the road and pulled over, calling you handsome, sure, it'd likely make your day.

Because it would never cross your mind that I'd leap from my car and overpower you, a situation that might even be more likely if you have the gall to rebuff my advances.

It'd never dawn on you that I'd forcefully rape you and leave you bleeding - or worse - in an alley somewhere.

And you've never had to question whether, if you went to the police with a complaint, they'd believe you. Or blame you for what happened to you.

But women face these fears everyday.

We're acutely aware of our physical vulnerabilities.

We've seen the missing posters, heard the stories.

If we haven't been personally assaulted, we know someone who has been.

We've been taught - by our parents, loved ones, and by life experience - never to let our guard down.

That guard has become part of our necessary psychological armor.

And we never leave home without it.

Sunday, July 9, 2017

Wasted.

I miss you today, though I know that I shouldn't.

Not purposefully.

You were in my dreams last night.

Making sacrifices. That you wouldn't when you could've.

Not that I asked it. But it was implied.

I miss you today, though I know that I shouldn't.

I find myself asking, if you ever miss me.

Do I haunt your dreams? Do you think upon waking

of those sacrifices. That you never would make.

Of the ways we went wrong. Yes "we" but you mostly.

Of time that we wasted. Though not quite a waste.

Pausing to wonder what could've, what should've.

Wasted. Though not quite a waste.

Wednesday, July 5, 2017

The Mourner's Kaddish

Throughout my house are pictures

of who I used to be

of epic, grand adventures

the very best of me.

Visual reminders

of times now brusquely gone

of a woman dead and buried

while I, as yet, live on.

If you can call it living

the ways I spend my days

working at forgiving

counting all the ways

in which I'm bruised and broken

and at whose feet fault lays

reliving and reliving

the prices I have payed.

Throughout my house are pictures

of who I used to be

of epic, grand adventures

the very best of me.

Visual reminders

of times I can't reclaim

of health beyond my reaches

a body without pain.

You can call it living

the ways I spend my days

haunted by the woman

the photographs display.

I know 'twas I helped slew her

but it doesn't help to say

that good intentions yet again

to Hell the road has paved.

Throughout my house are pictures

of who I used to be

memorials to times gone by

epitaphs to me.

The one who walks among you

a hollow shell is she

so speak of her but softly

say

a Kaddish, please, for me.

Wednesday, June 21, 2017

Mute

I'm so tired - so exhausted from screaming into the void.

I've always been a fighter. Always. I speak out when I see injustice. I write. I reach out to the media to communicate about, among many things, my illness, in a desperate hope to help myself and others.

But it all goes nowhere.

It's all for naught.

Injustice continues.

I believed Abraham Lincoln when he said, "All men are created equal."

But even he didn't stand solidly behind that.

Not really.

And neither do we, as a society.

Put simply, some people's lives are just more important than others.

And the injustice of that sickens me.

My God tells me every soul is worthy - has merit - deserves dignity.

Or maybe that's just my conscience, because even the Torah seems to put prices on people's heads.

So here we are.

I see injustice in the world.

Tekun Olam requires me to address those injustices I see.

But my efforts are grains of sand against a mighty sea.

I am worn away into nothingness.

But my dissolution means nothing, because I am one of those lives that doesn't matter.

I am one of those voices that doesn't carry.

Monday, June 12, 2017

Why I Dread the "Good" Days

Since becoming ill in 2015, there have been "good" days.

Make no mistake - not a day has gone by since that fateful August that I've had even a significant fraction of the health and abilities I had prior to FQAD - but there have been days when the nausea has subsided, and I've been able to ingest my favorite foods.

There have been days when my heart rate and blood pressure remained blissfully within the bounds of "normal" and I didn't have to lie down or remain inactive for fear I would faint.

There have been days when the pain's been more manageable.

Days when the vision's less blurry, the tinnitus less pronounced, the dry sicca syndromes less...dry.

I hate those days.

Don't get me wrong: it's not that I'm not grateful for any measure of relief. I am.

It's just that, every time I experience a "good" day, that day brings with it physical and psychological consequences:

On a good day, I am likely to "overdo it."

A low-symptom day means that perhaps I CAN tend the garden.

Or grocery shop for myself.

Or spend the afternoon with a friend.

A low-symptom day might allow for a walk, a short car trip, going to see a show.

But inevitably this "overactivity" that would've been but a drop-in-the bucket for healthy me, now pretty much guarantees that the next day, or the next few days, or even the next week will be one of punishment and pain because I dared use my body on the one "good" day.

Likewise, psychologically, a "good" day brings with it a false hope: if the nausea is gone today, perhaps it will be gone tomorrow. And forever! Perhaps today is the first day of the miraculous healing I've been praying for since the day my body first told me something was wrong.

Low pain day? Perhaps this is it! That rainbow after the flood! The promise that my body - a healing machine - has finally figured the complex code necessary to get back to that pre-FQAD me.

"It's here!," I inevitably tell myself. "Finally! Relief from this nightmare! Today, tending the garden. Tomorrow - working and traveling and conquering the world!"

So, imagine my heartbreak - the soul-crushing despair - that comes when the symptoms return and I am once again at square one (or square minus 101).

It's like becoming sick all over again.

It's the loss of healthy self all over again.

It's the cycle of grief all over again.

It's more than just a setback; it's a continuous re-injuring.

Psychological torture.

I hate the "good" days.

And yet, I continue to live for them.

Because it's the hope these days bring that keeps me going.

Man, I hate the "good" days.

But I sure hope today is one.

Thursday, June 8, 2017

What rare disease really looks like

What rare disease really looks like:

an endless array of medical tests, all of which come back "normal" or "inconclusive."

carrying armfuls of documentation to every appointment, to "prove" you've already had the tests done, already had certain conditions ruled out, already tried the standard remedies.

years'-long searches for a diagnosis, which may or may never come.

pre-prepared packets of information about your rare illness - assuming you've secured a diagnosis - to present to your doctors so they can research what you already know and "get back to you."

that all-too-familiar fear in your gut as you sit in the waiting area of a new doctor's office. Will this doctor actually believe you, or will he write you off like the last one? Will this doctor be kind, or will he scoff at you and say "It's all in your head"? And even if he does believe, will he be able to offer help?

debts of thousands upon thousands of dollars for drugs and treatments that may or may not help at all.

seeing dozens of specialists. If you're lucky, these specialists will try to work together. If not, balancing the different doctors' orders in entirely up to you.

sleepless nights from insomnia, pain, panic, or some other symptom. But when the morning comes, your situation is no better, because you have to get up and greet a day that could bring any number of terrifying symptoms.

bottles and bottles of prescription medications, some of them now necessary for survival, some of them just evidence of the rabbit holes you've gone down that just lead to dead ends.

judgement on the faces of strangers (and, more heartbreakingly, sometimes on the faces of family/friends) when you bravely venture from your home. They'll see your handicap placard, and, unless you're in a wheelchair or assisted by some other very visible device, they'll judge you. Some will even have the audacity to say hurtful things: "You don't look sick to me."

crying, often at what would be considered "inappropriate" times, because you are unable to do what you once could or what others can do with ease.

seeing a therapist in an attempt to mentally cope with what you are physically experiencing.

emails or phone calls from well-meaning family and friends, offering diagnoses they saw on television or "cures" they read online. Regardless of the source, your rare disease will definitely be cured if you try this new berry they found in Botswana that only grows in August...

that one guy who insists you "just haven't been praying hard enough."

shying away from pictures that show a time when you felt better.

avoiding mirrors because you don't recognize yourself in the reflection they show.

developing social anxiety because you fear the disappointment of friends and family when you announce you have to cancel. Again.

and...me.

Rare disease looks like me.