You traded up
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.”
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.
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.
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"...
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.
"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."
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.
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.
of who I used to be
of epic, grand adventures
the very best of me.
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.
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
a Kaddish, please, for me.
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.
I believed Abraham Lincoln when he said, "All men are created equal."
But even he didn't stand solidly behind that.
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.
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.
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.
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.
Rare disease looks like me.
Sure, I'd take a few over-the-counter pain meds for a headache, but, generally speaking, I'd avoid medication if I could. "Better that the body be left to do what it does best," was my motto.
This motto has become one of my unexpected battles since developing chronic illness.
Certain psychological aspects of chronic illness are well known in the C.I. lexicon: Mourning. Anger. Grief. Fear.
But for me, a newfound reliance on medication has been an additional emotional blow: Shame.
In my previous, healthy life, I took for granted that I'd get through each day taking nothing more than a multivitamin. Now, when I have to take my handful of powerful (and addictive) medications, I am ashamed.
I am ashamed because just a few years ago, I was very cautious not to take too many ibuprofen - now, I have to take scary medicines that you hear about on the news. Medicines government agencies want to crack down on because they can be addictive. Medicines that, taken inappropriately (and even sometimes as the doctor prescribes), can kill you.
And I now need them to get through the day.
I feel shame for taking these because, to the old, healthy me these medicines are an admission of weakness - a mea culpa that I can't "hack it" on my own. That I have somehow failed at being the tough-as-nails Superwoman I once thought myself to be.
Each dose is an acknowledgement that my body isn't working correctly. That I am broken, and cannot be fixed. That I am somehow less than I was.
For what it's worth, I recognize that the shame I feel is but one of many difficult emotions with which I struggle each day. I am seeing a counselor to attempt to better battle the shame and the blame, as I realize they are detrimental to my overall fight.
It remains my hope that I will one day no longer need medication, but I am working, in the mean time, to see meds as part of my Warrior Armor, instead of as an Achilles Heel.
It's a slog.
A painful, terrible, daily slog.
But I will conquer this as I have conquered so much else, and I will do it in my own time.
Because I am a tough-as-nails Superwoman.
And shame ain't got nuthin' on me!
Or, more aptly, that you're "wrong" for not fitting into them.
I was raised in a Republican, conservative, Christian home, and, as a child, I embraced all of these. I believed as I was taught. It was comfortable.
But 'round about puberty - about the time that a child begins to question and reason for his/herself - aspects of these teachings started to nag at me.
I remember distinctly three events in sixth grade wherein what I'd been taught was discordant with what I felt in my gut to be "right" and "just." I didn't know it at the time, but these three events planted the seeds that would grow into my complete redefinition of self in my 20s and 30s.
Event 1 - My best friend was Jewish. I'd been taught anyone that didn't accept Jesus as their personal Lord and Savior was going to Hell. So frightened was I of her being condemned forever to damnation, that I acted in desperation to save her mortal soul - told her she was going to Hell.
You can imagine the fallout.
Her parents got involved.
My parents got involved.
The teacher got involved.
My friend's defense, when I said this to her, was that God knew her heart and would judge and forgive her accordingly. My parents/teacher response however was something along the lines of "Yes, we believe that, but you're not allowed to say it."
I don't like being told what I am and am not allowed to say.
I never have.
It's always gotten me into trouble.
But I especially didn't understand why authority figures in my life would want to silence me from speaking what I had been taught was the truth.
This registered on my hypocrisy and justice meters. And it also got me thinking about what my Jewish friend had said.
I thought about what I'd read in the Bible. I thought about how God accepted humanity prior to the birth of Christ - how those people (Noah, Moses etc) were all presumably in Heaven. So why the sudden cut off date? And what did that mean?
Like Mary, I "pondered these things in [my] heart."
Event 2 - I've always been told I am Native American on my mother's side.
My mom has pics of my great (maybe a second great in there, not sure) grandmother who was full-fledged Cherokee.
Having studied basic US history, I knew Native Americans had been in North America for thousands of years.
And Jesus came 2K years ago.
And there was no internet back then...
"Mom, what about the Native Americans? They couldn't be "saved." They didn't know who Jesus was and didn't have any way to find out. What happened to them when they died?"
You can guess the answer.
I was PISSED.
I couldn't have been more than 12/13 years old at the time, but even at that tender age I knew that policy was COMPLETELY UNFAIR and I wasn't having it!
By that logic, either God was a fucking cruel asshole or what I'd been taught was wrong.
As I wasn't quite prepared to believe God was an asshole (I'd question THAT later), that left only one conclusion: what I'd been taught was wrong.
This was earth-shattering.
What else was I wrong about?
Holy crap...was everything I'd been brought up to believe a lie?
What was true and what wasn't?
What does the word "true" even mean?
Y'all - I was SHOOK.
But I began to question everything that no longer made sense.
I began to ask the hard stuff that the teachers couldn't answer during Sunday school. "You just have to have faith" was always the response. "That doesn't answer the question" - my retort.
Suddenly those waters that had felt so warm and calm in my childhood were changing. I could feel the temperature slowly rising, along with the tide.
Not only did this way of thinking not fit me anymore, but, if I stayed in, it might actually drown me or boil me alive...but WTF was I supposed to do about it?
Event 3 - At a very early age I sexually experimented with female friends. Just seemed the thing to do.
I told my parents about it, and they absolutely forbade me from engaging in such activity in the future.
I was so young when this first occurred, I didn't really understand why.
I just knew it was dirty and wrong and upsetting somehow, and therefore not to be done.
I refrained for some time, but, again, around puberty, I returned to the behavior. But this time I knew to keep it a secret.
The secret "came out" (yes, I know what I did there) in sixth grade, when the aforementioned "best friend" decided to tell the whole sixth grade class over some perceived slight.
Immediately I was both pariah and source of fascination.
I was stared out, spoken about in whispers, and also suddenly invited to hang with all the popular girls because...hell, I dunno.
Y'all, it was SO uncomfortable.
I didn't know which way was up or down.
Was I gay?
Was I going to Hell?
Should I ask forgiveness?
Would this be forever?
I mean, surely God made me this way?
Or was I being tempted by Satan?
Was Satan even real or did people just use him as a scapegoat for their own shitty behavior?
Was I engaging in shitty behavior? I mean, I wasn't hurting anybody... or was I?
WTF WAS GOING ON?
In the years that followed, one by one the convictions of my childhood fell away.
I was exposed to "forbidden" things that turned out to be some of the most beautiful and inspirational in my life.
I met gay people - good people - and I liked them.
Continued exposure to "difference" made me uncomfortable.
But not uncomfortable with the difference I was encountering - uncomfortable, instead, with myself.
I was raised in a Republican, conservative, Christian household.
But as the years passed I didn't identify with any of those things.
Each was like the boiling water with the choppy seas.
I was going to drown.
Or be strangled to death by a lifestyle that didn't fit.
Something had to give - I had to embrace my own change.
And so I have.
Today, I am an Independent, liberal Jew.
I'm married to a wonderful Jewish man and plan to stay that way, though I no longer see any shame in same-sex relationships or any call I may have or once had to them.
I no longer believe I - or anyone else - is going to Hell.
I don't think it exists.
I think Satan is more or less the name we've given that tendency within all of us to act selfishly and generally shittily.
I don't believe any faith - or absence of it - has it exactly right.
I believe human beings are capable of great and terrible things.
I'd like to be part of the great things and help prevent some of the terrible ones.
That's who I am.
That's the skin into which I "fit."
I reserve the right to change though.
I reserve the right to continue to grow, to continue to experience, and to continue to slough off those shackles that constrain me, even if they once felt comfortable.
And if those experiences lead me in a different direction than the one I am currently on, I reserve the right to change course.
Without fear of persecution - from myself or from others.
Without fear of condemnation - from myself or from others.
Without fear of hypocrisy, because growing and changing when faced with new experiences/information is how we learn.
Some will be born, live, and die subscribing to the labels under which they were born. Others must transform.
I proudly count myself among the transformers.
I can't claim to know what it's like to be openly gay or transgender, but, I do think I understand to some degree the feelings that come with knowing that the standards/practices/expectations you're born into are "wrong" for you.
And, for whatever it's worth, fellow transformers: I believe it is your right to make it, and yourself, right.
Whatever that means to you.
I support a woman's right to choose; I recognize the ongoing impact of white privilege; I stand by the separation of church and state.
My heart goes out to the homeless; I am appalled by what's happening in Syria; I can empathize with just about anyone, and commercials make me cry.
I am the very definition of a bleeding heart.
But I have no compassion for anyone I personally know.
In the past, I have attended a local Buddhist temple to participate in the compassion meditation, wherein one wishes compassion on those dear to them, then on human beings at large, and, finally, on someone that one actively dislikes or with whom he or she has conflict.
The meditation is crafted this way, because it operates under the idea that you wish good on others you care about first (easy), the world as a whole (more difficult), someone shitty (hard).
Last night I read that compassion meditation is beneficial in rewiring the brain, and has been linked with health benefits. So this morning I attempted to resuscitate my long-dead practice, and realized what I just revealed: for me, it is actually easier to wish compassion on the world at large than it is for me to bestow it upon those persons I care about.
You can imagine, therefore, how much compassion I spare for my enemies.
Intrigued by my own hypocrisy, I attempted to reason out why, for me, the situation was so.
My conclusions were these:
1. I have compassion for circumstances. I understand struggle. Therefore, if you are a stranger experiencing a tough circumstance, my heart aches for you. However, if you are a person I know who is undergoing a struggle, I watch how you handle it. And usually, I find fault. I judge you. Because I am a judgmental dick.
2. If I care about you at all, or, even if we've known each other for a long time, but I personally don't care much whether you sink or swim, it's likely you've hurt me in the past. Something you said or did stung, rubbed me the wrong way, made me cry in a corner when you weren't watching. And I've never forgotten it. You could head Green Peace, Save the Whales, and Feed the Hungry, but if you made fun of my stirrup pants in fifth grade, then man, we've got beef and I cannot be expected to muster up any sympathy for you just because your whole family was wiped out by a monsoon. Serves you right. You SHOULDA RESPECTED THE STIRRUPS, I say!
Because I? Am a judgemental, easily-bruised dick.
3. If I really care about you - if you are a close friend or family member - it is likely you have, at one time or other, cut me so deeply that I've been the walking wounded since the offending incident(s). I brighten when I see your face. I genuinely love you. I want to be around you. I want to have you in my life. But every time I see your face, the incident is etched in it. I cannot look away.
I am completely incapable of forgiveness.
And without forgiveness, there can be no compassion for anyone I personally know.
I have never forgiven myself for anything I have done.
There is no misstep or misspeak for which I have not chided myself repeatedly and mercilessly.
If I hold you to an impossibly high standard, it is nothing to the standard which, somehow and somewhere along the line, I set for myself.
I have been this way - ruthlessly judgmental - for as long as I can remember. When I was 3 or 4, I had a dance recital that my teacher (who would typically stand in the curtains and do the dance with us bc we were 3 or 4 and couldn't remember it all) could not attend because her mother had died. With no one to guide me, I screwed up the dance. And cried on the way home. And I've never fully forgiven my teacher for not showing up that day.
HER FUCKING MOTHER DIED AND I CAN'T GET OVER THAT I SCREWED UP A DANCE.
Let that sink in.
Because it's true.
THIS, my friends, THIS IS THE MONSTER YOU KNOW.
THIS IS THE MONSTER THAT GREETS YOU WITH MY FACE.
And I don't know how to kill or conquer it.
I've held on to resentment and real and perceived slights for so long, I do not know how to do anything else.
So much of my time has been spent in contemplative judgement, that I do not even fully understand the concepts of compassion or mercy.
At the end of the day, the only being on whom I can bestow a genuine, guilt-free compassion is my dog, and even he pisses me off sometimes, and I take a few days to recover.
Friends, this trait of mine is impossibly detrimental.
My soul literally feels wounded all the time.
And once you're wounded initially, each further wound cuts deeper, hurts more, impairs more.
I now suffer 36 years of perpetual impairment.
And I don't know how to stop.
In one way, I know I am doing this to myself. I know I cannot control the actions of others, and I know I cannot allow myself to be a slave to these feelings.
And yet, so much of me says you must be held responsible for your own actions. You must be held accountable for the hurt you've caused me and other people. Why should you be allowed off the hook so easily, when others, like myself, have to suffer because of what you've done?
Some I know would call this "making myself the victim". Those people can go fuck themselves.
Because, put simply, my pain is real. What you did to me was real, and inflicted real pain, and there should be consequences for those actions.
But, conversely, those persons who should - if they listened to me - now be in the process of "going to fuck themselves" are right in that, no matter how or if apologies are offered, my mind cannot seem to erase the offense. This inability to move past my pain puts me in a perpetual state of victimhood.
Cliff's Notes - it's your fault I'm the victim. It's my fault I continue to be.
So what do I do about this?
How do I address it?
How do I move past it?
How do I develop compassion for you if I have zero even for myself?
I'm asking because I honestly don't know.
Legit - I. DO. NOT. KNOW. HOW.
And it's tearing me up inside.
Psychotically, I am beating myself up for ceaselessly beating myself up.
It's a loop of insanity - one I only avoid if I engage myself in perpetual distraction or activity.
Whatever you do, please dear God DON'T GIVE ME TIME TO THINK! It will only invite the spiral, and I will go from fine to fucked up in mere minutes.
Laughably, the advice I am often given to combat this behavior is to meditate, which, as you may have guessed, brings me full circle.
I cannot do the compassion meditation because I have no compassion. I cannot develop compassion because I cannot meditate on it.
It'd be funny if it wasn't so painful.
Sickly, it is funny to me.
My inner monster enjoys black comedy I guess.
I wish I could say I wish you a great day.
But I wish I could wish such things.
And, if today holds true to every other day, I will spend a significant amount of time berating myself for wishing I could wish others - and myself - well.
I really hope they quit killing people in Syria.
Black and brown faces weren't unknown to me - we had a handful of minority students in my high school - but, with regard to "minority culture," my exposure would have been pretty much limited to what was then on television - "The Cosby Show" and rap videos - if it weren't for public arts programs.
Friends - I OWE MY LIFE, AND LIFE AS I KNOW IT, TO PUBLIC ARTS PROGRAMS.
First, it is no exaggeration to say that dance, chorus, and drama gave me a reason to live when my adolescent depression tried to convince me otherwise. These programs gave me friends, mentors, and a support system.
But equally as importantly - and to return to the subject of this post - public arts programs exposed me, in whatever limited ways, to cultures outside of my own.
Dance exposed me to musicians and choreography styles from around the world. I would pas de chat and arabesque to masterpieces composed centuries before my birth in lands I have yet to visit. Because instructors chose to expose me to music I would never have pursued on my own, I developed if not a-taste-for then at least a-basic-understanding-of modern musicians of various races and sexual orientations. (Turns out black people gifted the world with much more than Cosby and rap videos. Who knew? ME! Thanks, in large part, to arts programs.)
In choir, I sang selections in many languages - Spanish, French, Hebrew, Swahili, Latin. And in singing these songs and learning their English translations, I garnered (however unintentionally) some understanding about the cultures that inspired them. Choir is the reason I can tell you how to say "I love you" in Spanish, French, Russian and Hebrew. It's also where I first learned "Do Di Li," a song I asked my best friend to sing at my wedding.
Theater taught me about how other people in other cultures think. Plays, perhaps more than any other artistic medium, demanded that I look at others' motivations for actions - why is this person doing this? What does this person need from this? What cultural and societal motivations would drive a person to act in this way?
From these lessons, I learned empathy.
"Other" became not so much frightening as fascinating.
And that fascination inspired the desire for further learning.
I cannot overstress the overarching impacts these programs have had on my life, on how I treat others, on how I understand others, on how I understand and continue to shape myself.
This post - this post is about the importance of public art programs. It's about the impact that few dollars and a group of dedicated individuals can make in the life of a child. It's about how the influence of an art teacher or a single exposure to a classical composer or contemporary playwright, can literally change the course of a life.
This post is about appreciation.
But I would be remiss if I did not at least mention that this is also a post about concern.
I am concerned about the future of public art programs in the US.
Often, arts programs are the first on the chopping block when budgets are tight.
Standardized tests don't cover Monet or Mozart, and, with No Child Left Behind's emphasis on test scores for federal funding, the arts are deemed "optional," when in actuality they are anything but.
Numerous studies have shown that involvement in arts programs improve overall student performance and test scores. But these findings don't seem to sway those whose hands hold the purse strings. And with the current administration looking to defund the National Endowment For The Arts, I truly fear the dire consequences to future generations that are not fortunate, as I was, to be exposed to cultures, peoples, and belief systems I never would have sought on my own.
Much of what I hold intellectually and emotionally dear was not something I actively sought - it was dropped at my feet (and sometimes force-fed) by an art teacher who refused to let me languish in intellectual laziness.
Those teachers, though they may never know it, are the ones I credit with nearly every positive attribute I possess.
To those persons, I want to say, "Thank you." You helped shape and change me in more ways than you (and even I) could possibly know.
If you were also someone made better by public arts programs, I invite you to share this with others. Perhaps together we can all make the necessary waves to save these life-changing programs.
Thanks you. And "God bless us, every one."
And if you caught that last reference, thank an art teacher, because I know you didn't pick up Dickens on your own!
You hunt, scratch, and peck for inspiration.
You haunt your previous inspiration points, seeking fresh perspective on the familiar, or maybe even hoping those hallowed halls have somehow changed and that your memories, therefore, can do likewise.
But sometimes... sometimes the subject shows up at your door.
And when it does - when it incessantly knocks - sometimes you answer.
In the past month, two persons seriously afflicted with what I have - fluoroquinolone associated disability - committed suicide. In each instance, my response was a complete and total physical and psychological meltdown.
But I didn't tell any of you about it.
I didn't let any of you in to see it.
And I attempted to move past it...
But suicide, it seemed, wasn't "done" with me.
Knock, knock, knock... Amy Bleuel, founder of Project Semicolon, commits suicide.
Knock, Knock, Knock... "13 Reasons" shows up on my feed. Knowing nothing about it, I decide to watch. Plot - teen suicide.
KNOCK, KNOCK, KNOCK... I tune into "S Town" expecting a murder mystery. I fall in love with an Alabaman named John B. He commits suicide.
The knocking has been so incessant, I fear that I MUST open the door.
So here is my suicide story.
I've battled depression since childhood, though, at the time, I didn't know that's what it was.
At the time I thought I was just sad. Sad because of experiences at home. Sad because of social awkwardness and perceived or real rejection. Sad because...of any number of external things.
Throughout childhood and adolescence, I mistakenly believed that, in my case, if my circumstances changed, so too would my mood.
But my circumstances just didn't let up... And you could see it - if you were looking - in nearly everything I did. My art from the time - my personal drawings, my poetry, my writings... In retrospect, I was clinically depressed. And, frankly, if I hadn't had scholastic arts programs and a very supportive boyfriend, I don't think I would have made it through this time.
Even with these safety nets, I did attempt suicide on at least one occasion.
I took a bunch of pills from the cabinet.
I don't know how much, or what. I don't even remember what "incident" inspired it.
I just know I passed out on the couch in the living room and, when I woke, my parents were there, watching tv. Everyone just assumed I'd taken a nap.
And I was actually thankful I woke up.
I never told anyone; time passed; circumstances changed but my depression didn't... and my 20s were spent stumbling through it, going to therapists every two years or so, trying meds that I couldn't tolerate and would abandon every few years or so, wondering why I would behave erratically. Wondering why I could be elatedly happy one moment and in the depths of despair the next. Wondering why I couldn't seem to find an emotional middle ground.
I often contemplated suicide during this time, but no attempts were made. I kept thinking that, if my external circumstances would just change, so, too, would my mindspace. I wouldn't be facing, on a regular basis, this impenetrable darkness.
But the darkness wasn't outside.
It lives inside.
And I continue to battle it everyday...
“Despair … is the ultimate development of a pride so great and so stiff-necked that it selects the absolute misery of damnation rather than accept happiness from the hands of God and thereby acknowledge that He is above us and that we are not capable of fulfilling our destiny by ourselves.” ― Stephen Adly Guirgis, The Last Days of Judas Iscariot: A Play
In 2010 I played Jesus in The Last Days of Judas Iscariot, which remains one of my favorite plays and a shining example of what I can only, lamely, call "modern literary art." If you haven't read or experienced this play, I suggest you cease reading this immediately, and go and do so.
For never, in my meager existence emitting the muted-but-brilliant light of life have I read something that so captured my internal darkness. And, that I was cast as Jesus, I think, is why I needed to write this...I am discovering this truth as I type.
The play centers on a trial staged to determine the fate of Judas' soul. Angels, disciples, even Freud, weigh in. As with suicide, everyone has an opinion, and, at the center of these swirling opinions is Judas...sitting, despondent, in a cell.
I, Jesus, sat back-to-back, a mirrored but reversed reflection, with Judas in his prison.
I wore a white shirt. He, black.
I sat with him in his despondency, because his despondency was my own.
In every way, I - forgiveness, acceptance, redemption, light - held the key to his cell, and I'd give it to him if he'd just ask for it. But the cell was of his own making. He - I - couldn't believe that I would hand over the key... and so the deeper truth, the truth that He/I created the cell - that no key was even really necessary, as there were no literal bars - that he/I was free to leave it whenever he/I chose, was lost on Judas.
But it's a truth I attempt to rediscover within myself every day.
For today, I am the bright side. I am the light side. And I am speaking to you know. But the devil, an illusion I and Judas both see as a separate "other", but who is really the darkness in me manifest, is never further than the door.
He lives here.
Despair lives here.
Because despair is in my synapses.
And my synapses will continue to fire until I am gone.
For some like me, suicide is the only way to slay the devil.
If you're like me, you understand that.
If you don't, you're fortunate...infinitely fortunate.
You are attempting to understand and quantify and - yes, I will say it - JUDGE, something you have never experienced.
"Suicide is never the answer," you say.
"Suicide is cowardice. Suicide is selfish. Think of the people you'll leave behind!"
I can describe for you, in great detail, Michelangelo's "Pieta," but, if you've never seen the sculpture in person, it will be impossible for you to grasp the beauty, the artistry, the complete and utter fucking tragedy of the masterpiece.
You can't be blamed. It is impossible for you to understand.
And so it is...
And so it is that I can tell you... I can tell you of the unimaginable physical pain I experienced and continue to experience as the result of FQ poisoning.
And so it is that I can tell you of the psychological torture of living in perpetual fear of what part of your body will malfunction next, and possibly result in a lifetime of extreme disability or prolonged, painful death...
And so it is that I can try to explain that facing that daily devil is not cowardice, but the very definition of bravery. That suicide is not selfishness, but surrender. That, to me, the acute pain to the people I leave behind might actually be preferable to the years, perhaps decades of pain that they will be forced to observe - that I AM thinking of the people I love when I truly contemplate leaving - this will all be lost on you.
Because you've never experienced the "Pieta." You've never been where I've been.
I was forcibly admitted into a psychiatric hospital in November 2015.
I am the bright side.
I am the light side.
And I am speaking to you know. But the devil, an illusion I and Judas both see as a separate "other", but who is really the darkness in me manifest, is never further than the door.
And welcome to another installment of "Erin's antibiotic illness."
In today's entry, we will explore my latest breakdown - one I'll heretofore refer to as "The Mole."
Since childhood, I've had this silly mole on my right forearm that always insisted on growing two long, silky, black hairs.
These hairs grew at an incredible - record-breaking? - rate so, no matter how often I shaved them, my constant companions would return within days.
Since my poisoning in 2015, I have steadily lost the hair on my head - to such an astonishing extent that I cut my always-long hair short and now use powders to cover the bald spots. But, through it all, The Mole hairs stayed. Like weird beacons of hope, they stayed.
They're gone now.
In fact, my arms have become completely hairless.
I've been sick now for 19 months - 19 months to the day, in fact, of when I took my last dose.
In what might startle some, and always makes me exceptionally sad, I ask God to send me signs on the anniversary days - the 15th - of the month, to show me whether or not I am getting better.
Call it psychosomatic if you like (I really don't care what you call it), but on these days I have unfailingly been given signs of increased illness.
On July 15, 2016 - at exactly 11 months - when I asked for my first sign - I completely lost my sense of taste and smell. Completely gone. Overnight. This lasted for six months.
On Sept. 15, 2016 - 13 months to the day - my menstrual cycle arrived impossibly early, signaling the hormonal deficiencies I was developing. I also got piercing ear and neck pain at this time, which, to this day has not dissipated.
Today, The Mole stopped growing its hairs.
Friends, to this point I have fought and fought - haggardly holding on to the hope that this was going to improve. That my body was going to beat this thing and rebound.
That I'd be one of the ones to get better.
Sadly, this is not the case.
For many who suffer the poisoning, they catch it early and cease the medication.
Though I had symptoms from pill two - none of the doctors I consulted about the symptoms thought it was the meds. So I was continuously dosed. And, when I got incredibly sick and was hospitalized, I was dosed with more, powerful antibiotics and steroids (which are counterindicated with Cipro).
I was left completely disabled.
And completely unbelieved by a majority of the medical community.
Since that time, I have been consulting with other victims (most of whom saw some level of improvement) and doing my own research.
What I've found isn't promising.
To begin, I have permanent CNS damage. Know what the CNS is? It's your brain. I have brain damage, and that shit don't heal.
It's why I can't sleep. It's what's causing my vision issues. It contributes to my constant tinitis, sound sensitivity and headaches.
Secondly - and why so many are crippled for life - Cipro can alter your mitochondrial DNA. Mitochondria are the building blocks of, well, basically everything. If the DNA of the mitochondria is damaged, your body begins producing damaged cells to replace those cells that are dead or dying. So instead of receiving a steady stream of healthy replacement cells like all of you do, I'm getting damaged ones. And those damaged ones are making more damaged ones. Which make more. And now the damaged ones are outnumbering the healthy ones. Which is why I am getting ever-sicker.
Well, that and the oxidative stress.
Oxidative stress, for those who don't know, is something we all have. But the body uses things like antioxidants to combat the oxidative stress, so you don't break down over time. Naturally, to remedy my oxidative stress, I have attempted to up my intake of all antioxidants. But, as Cipro is the gift that keeps on giving, it has screwed with my body's ability to absorb and utilize antioxidants.
It has also affected the way my hormones etc attach to proteins.
This is a known side effect of Cipro, but it is nowhere on the patient leaflets.
It's also nowhere on the patient leaflets that it can permanently affect how your hormones attach to proteins and therefore distribute throughout the body. So, basically, my body is producing adequate hormone but, as it cannot attach to proteins, it's not getting where it needs to go to get used. And therefore healing isn't happening.
My bloodwork shows my body is doing everything in its power to heal. My histidine levels are through the roof - histidine is used by the body to create healthy tissues and protect nerves (I also have peripheral neuropathy from this BTW. Lovely.). But again, the histidine isn't being utilized properly by my body to get where it needs to go to heal me.
So my poor body exhausts itself with fighting - and I cannot sleep (Brain damage! GABA receptors destroyed) to rest and replenish it.
All of this I see when I look down at The Mole.
Or in the mirror at my balding scalp.
Or at anything really, as my vision is so profoundly affected.
I am struggling.
I am hurting - physically, emotionally, and spiritually.
But there is no help for me.
And, sadly, if my path follows those of so many other severely poisoned persons, I will likely continue to get worse and not better.
I'm not sure what I want from you readers. Love and support, yes. But, most likely, a testimony for when I am gone.
I want you to know what brought me down.
I want you to know what took me.
I want you to know that, no matter what happens, I did not go gentle into that good night.
I fought the only way I knew how.
I never fully abandoned God, though I question whether He abandoned me.
I held out hope, not wanting to be the "sore storm".
I loved with all I had, in my very imperfect way.
I guess all I ask is that you remember me.
Cipro has taken so much, but please don't let it claim the memories you have of me.
But I was never warned that Life was also indiscriminately cruel.
Life gives lymphoma to children and "life" to Charlie Manson.
Life gives eviction notices to families and North Korea to Kim Jong Un.
Life delivers stillborn babies and $ billions to oil magnates.
Some turn to God for restitution and solace.
for earthly injustice and inequity are rectified in the skies.
But still, there are others
those in whose numbers I count myself
for whom Life and its monstrosities will not be metered out.
I harbor no illusions of a divine salve for my sufferings, Solomon's parsings over my plagues
Rather, I attempt to savor
grotesque beauty from the horror
Gossamer appears the chalk line
between Life's pleasure and His pain.
Vision blurs (Aug 2015)
Visual snow (unsure)
Visual light sensitivity (unsure)
Lightheadedness (late July 2015)
Syncope (Late July 2015)
Dry eye (Aug 2015)
Stomach pain/nausea (late July 2015)
Insomnia (August 2015)
Panic (Nov. 2015)
Burning in hands/feet (Aug 2015)
Numbness in hands/feet (Aug 2015)
"Queasy quads" quad pain (Aug 2015)
Daily fever (unsure) *
Tachycardia (Aug 2015) *
Variable blood pressure (Aug 2015) *
General flu-like feeling (unsure)
Profuse sweating (Aug 2015) *
Muscle spasms (unsure)
Heart pain/shortness of breath lying down (unsure but definitely by Dec 2015)
Hair loss (Aug 2015)
Tremors (Aug 2015)
Nerve pain throughout body (Nov 2015)
Vaginal pressure (Oct 2015)
Frequent urination (unsure) *
Cracking joints (March 2016)
Reynaud's Syndrome (2016)
Palpitations (Aug 2015) *
Flushing (unsure) *
Extreme dry mouth (April 2016)
Back Pain (March 2016)
Ear pressure/pain (April 2016)
Tinnitis (April 2016)
Burning pain in the skin (Feb 2016)
Osteoarthritis (April 2016)
Period discrepency (July 2015)
Widespread joint pain (April 2016)
Widespread tendon pain (April 2016)
Tooth pain (April 2016)
Head pressure (Aug 2015)
TMJ (April 2016)
Extreme dry skin (April 2016)
Tooth breaking (April 2016)
Bodywide itching (April 2016)
Extreme dry nose (May 2016)
Complete loss of sense of taste (July 2016) <-this has gone away
Complete loss of smell (July 2016) <-this has gone away
Burning like acid in the muscles (Oct 2016)
Goiter (Sept 2016)
Hyperthyroidism (Sept 2016)
Very sensitive hearing (Sept 2016)
I am terrified. I seem to match the progression on this chart - the blue line. The worst of the worst, according to "The Flox Report."
When I pray in my Temple, it's in a foreign tongue spoken fluently (almost exclusively) in The Middle East.
My holy day is not Sunday.
Many of the devout of my faith wear hair coverings.
If you trace it back far enough, all of my ancestors are immigrants.
What am I?
I am a Jew.
But I could just as easily be a Muslim.
Given our present political climate, I think about this often.
As so many, including my rabbis, have pointed out - it was not so long ago that these anti-immigrant sentiments and fears were levied against the Jews - to catastrophic results. When we say "never again," we mean "never again TO ANYONE." Human beings have always feared - and persecuted - that which was different, that which the majority did not understand. And I see it happening today, even on my Facebook feed. Yes, to the Jews, but also to an alarming degree to Muslims. To this I say "never again."
I'm so tired. I am tired of trying to explain these things to people who refuse to see them. And I am also tired of trying to explain to persons of the majority what it is like - the little daily reminders - of what it means to live in any way outside of the majority. As I was not born Jewish, I believe I have a unique perspective on this. I lived as a member of the majority for 20-something years, and it's amazing how things begin to change the moment you decide to venture away from the majority path. It's an eye-opening revelation that cannot be fully appreciated unless it is experienced.
So I suppose, for the majority, the best way I can phrase this is as one, rather famous Jew said to the masses: "Love one another, as I have loved you." Majority folks (in the US, that means "Christians"), you profess a belief that a Jew - one chosen by God Himself - died to buy mercy for your immortal soul. To truly live his likeness - what does that call for in this situation? Jesus was willing to submit to very literal, physical torture, not for those who already believed and practiced as he did, but - more powerfully - for those who did not believe and practice as he did.
Sundays are the Sabbath for the majority.
So there's a Sunday thought for you.
the faults within our stars
Heaven, it elusive be
from Venus and from Mars.
Celestial orbs bespoke our Fate
before Began was lost
Faulty though our model, make
Our cognizance, our cost.
When and how and if I go, let it ne'er be said
That I went gentle into that good night
Silent in my bed.
Instead I rage the Heavens down
or call the Darkness up
The ripple that becomes the wave
I take THY bitter CUP
Lord, imperfect beings, we
the faults within our stars
Fate these orbs to me bequeathed
the tortured soul of Mars
Furious I run into
The battle YOU have wrought
Like so many other of Your soldiers Time forgot.
And while I may not understand
the whys of Your great plan
the battle fraught with danger
is where I make my stand
And though I know I will not make
it to the Promised Land
I scream my screams, and reap my waves
As Samson, son of Dan.
Crushed beneath my arrogance
Your gifts, Lord
and Your punishments
My dying breath it will be spent
beneath Your battlements
Like so many other of your soldiers Time forgot.