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.

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.

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.

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!