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.

Tuesday, June 6, 2017

Ain't that a cryin' shame

Prior to becoming ill, I wasn't what you'd call a big "fan" of medications.

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!

Wednesday, May 31, 2017

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.

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...

So...

"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 burn.

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."

Today.

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.

Monday, April 24, 2017

Compassion Monster

I'm a liberal leftist who supports gay rights, believes in equal pay for equal work, and recognizes the detrimental effects of institutionalized racism.

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.

Including myself.

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.

Yeah.

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.

Me.

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.

Yom HaShoah.

Saturday, April 8, 2017

In Praise of Public Arts Programs

I grew up in a white, Anglo Saxon, protestant area.

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!