There's no one to catch me.
No one at all.
There's no one to catch me.
No one at all.
One of the most debilitating aspects of my Fluoroquinolone Associated Disability (FQAD) is a complete inability to sleep. You see, I have brain damage that impacted my GABA (aka. “body-calm-down-and-sleep") system.
So Hi-Ho, Hi-Ho, to the sleeping meds I go…
But over time Ambien quit working.
And then the sedating antidepressants quit working.
And then the muscle relaxers and benzos quit working.
Yes, yes, yes, you name it, I’ve tried it: from chamomile and melatonin to the heavy stuff (including GHB). I’ve done Cognitive Behavioral Therapy. I’ve meditated. I’ve had the sleep tests. I have a sleep doctor.
But while they have the best of intentions for me, it seems I am now out of options.
I hobbled along for a while by alternating the meds every few nights to avoid tolerance. But my hobble became a crawl, which has now become an all-out faceplant.
Y’all I’m stuck.
And every aspect of my rare chronic illness intensifies when I cannot get any sleep. Add that to the knowledge that sleep is essential in combatting ongoing and ever-increasing illness.
I’m at my wits’ end.
I feel like giving up.
Where once I was a warrior, I now feel like a soldier slain.
Because what do you do when the meds fail you and you’re out of options?
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 (which is outside of our control. No one would choose to be sick if they didn’t have to be), it places the blame squarely on our shoulders. Don’t wanna be sick anymore? Just pray. As if miraculous healings can just be ordered via Holy Amazon.
2. It’s a misreading of every holy scripture of which I am aware. Just because God can do miracles, doesn’t mean everyone gets one. “You get a miracle! And YOU get a miracle! Everyone gets a miracle!” He’s not Oprah, for Heaven’s sake.
3. It’s nonsensical. We live in a world replete with suffering. Children get cancer, heart disease claims more than 600,000 US citizens a year, Zika is a thing. You really think all of these people – and their families and friends – didn’t think to pray and ask their respective Higher Powers for help? I guarantee you, they did.
So when the miracles don’t come through – when we remain sick or worse – what does that mean? For some, it means we’re meant to endure trials to become stronger, to learn lessons, to provide inspiration or comfort to the suffering. For others, it means we simply drew the short straw: some people live to be a healthy 100; some don’t. Tough break for us. But for others, especially those of the evangelical sort, I always get the same response: you must not be praying hard enough.
My illness is therefore linked to my faith, and I must be a spiritual slacker.
Nope, nope, nope. I refuse to bear this blame any longer.
Just because there are people on this planet that cannot conceive of a world full of senseless injustice doesn’t mean I or any other chronic illness warrior is to blame for the hardships we suffer. I’ll be damned (pun intended) if I continue to shoulder the blame of that accusatory belief system.
Does God continue to grant miracles? I’m sure. Will I continue to hope/pray for one? You bet. Can you add me to the prayer list at your church/temple/mosque/house of worship? Yes please.
But if you see me next week, and I’m still sick, please don’t pester me about how my continued suffering is a result of some personal, spiritual failing. It isn’t.
Instead, remember: “there but for the grace of God go I.”
And give thanks for your health. Because some of us would do anything – including pray every single day – to have ours back.
These startling stats, which are explored in HBO's new documentary about malpractice in Aurora West Allis Medical Center in Wisconsin, are a documented but seldom-discussed danger of chronic and rare illness.
For some, like myself, medical malpractice is actually the cause of chronic conditions. For others, frequent trips to the hospital and comorbid conditions requiring the care of multiple specialists increase the chances that one day one of those specialists is going to make a mistake. And when that day comes, we can only hope the repercussions will be minimal.
Since becoming disabled by fluoroquinolone antibiotics in 2015, I've become my own health advocate - researching methods and medications before making decisions, because I know first-hand what blindly trusting a doctor can do. I make sure I go to the reputable sources - Mayo, Cleveland Clinic, Johns Hopkins. I approach each doctor respectfully with my findings and questions. But, like many with rare illnesses, I (and the research I lug to each doctor's appointment) am ignored, dismissed, or ridiculed by the very people who are supposed to help.
This happened to me again this week, when I went to see a neurologist, studies and newspaper articles in hand, and the neurologist openly scoffed. She refused to even look at the studies, offered me pain meds, and, when I declined, she left the room and did not return.
Knowing that medical malpractice and medical mistakes result in patient death and disability so frequently, it's surprising that so many of us with rare diseases are treated this way by the medical establishment. Why the pushback? Is it an issue of pride? Because I already know each doctor I see spent years getting that expensive medical degree. But I also know that doctors are people, and people make mistakes. I don't want any more mistakes made with my care. Are two heads not better than one?
Prior to becoming a member of the chronic illness community, I was an investigative journalist. Many's the day I've mentally flogged myself for not using those research skills to investigate the meds I was being given in 2015, but hindsight is 20/20, and all I can do now is to attempt not to make those same mistakes going forward.
So I research. Not to diagnose (though I do know many in the chronic illness community, myself included, who would not have secured a diagnosis had they not done research themselves), but to explore new avenues of treatment. In the case of the neurologist this week, I brought her news articles about a cream researchers are exploring to help those with peripheral neuropathy. I wanted to know if this might be an avenue of treatment for me. Without reading the articles, she gave me a cursory, "I've never even heard of it" and sent me packing.
I spent the remainder of my day crying, my bank account lighter a co-pay and my emotional and physical reserves depleted from my efforts.
It shouldn't be this way. Patients shouldn't be bullied or discarded for attempting to participate in their own care, especially when physician errors count for so many deaths among our population. No one is saying physicians should bow down to Dr. Google, but studies including “Clinical Research to Clinical Practice-Lost in Translation,” conducted by The New England Journal of Medicine, have found that the average physician is 17 years behind on the current medical literature.
Fellow warriors, we walk a lonely road. No one outside of ourselves can truly understand our challenges, but this doesn't mean we should be alone in our pursuit of treatment options or wellness. For those of you struggling to find a supportive medical team that actually listens and considers what you have to say, I offer my condolences. It's a struggle I share.
But please don't let the naysayers and the gaslighters get you down just because they wear the white coats. Continue to seek out those physicians who want to be allies, advocates, and partners in the process. They do exist, and they are worth their weight in gold.
And I can't contact any of them.
fiddle while it's blazing
Cackle as it burns
watch 'em run; it's amazing
I bow to your bow
King you got me aflame
MCs prayin’ for snow
They can't handle your reign.
But I'm screamin' your name
But that's just an analogy.
I've never had a reaction to you.
And my first cogent thought.
We've had profound conversations.
And laughed at juvenile jokes.
But you and I have never spoken.
I light up at the memory of your smile.
A smile I've never actually seen.
You're my best friend.
The only one who understands.
Because you've been there.
Even though you've never been here.
You're the one I always want to call.
But I don't have your number.
The one to share my joys, my pain.
You have your face.
And your name.
But I have neither.
If I ever saw you on the street, I'd walk on by.
Because what is left to say?
Despite days, weeks, years of fidelity.
I haven't said one word.
You don't know my name.
You don't deify my face.
My fondest memories are of you.
But I've never been with you.
If you don't count this morning.
And last night.
And every time that I'm alone in the car
and we're listening to music -
sometimes, some of it's yours.
That's when I'm reminded
I am alone
But not in my devotion.
There are a million mes
and only one of you.
Proprietary perhaps, my version.
But your face - your name - belongs to many.
If I ever saw you on the street, I'd walk on by.
But I know I'll
Call you later?
And to this I say - to WHOM exactly?
Because I've told countless people that I don't think I can continue to make it through the day like this... and yet, my days are empty. There is no follow up. No help from the people I've told. No visits. No phone calls. No "just checking in."
Instead there is silence.
Silence from friends and family who don't want to hear it. Who don't want to deal with it. Friends who disappear because you're no fun anymore or because seeing you sick makes them "uncomfortable".
So who exactly am I supposed to be calling? Those of us who aren't on magnificent terms with our families - on whom are we supposed to rely?
The suicide hotline?
Called them twice. Was placed on more than a 20 minute hold. Twice. No help to be had there.
Get a therapist, you say?
With what $?
And, if $ isn't an issue, do you know how much WORK it is to find a compatible therapist? MOST DEPRESSED PEOPLE DON'T EVEN FEEL UP TO BRUSHING THEIR TEETH, MUCH LESS SCOURING THE INTERNET FOR A THERAPIST THAT ACTUALLY TAKES THEIR INSURANCE, and then booking an appointment, keeping that appointment, sticking with it long enough to see if this person is the proper fit, only to learn they're not and start all over again...
So yes, by all means, enlighten me.
Tell me more about how ending it all isn't the answer.
Tell me more about how you don't understand why people turn to drugs, or that happiness is a choice, or that I should "just find a therapist/get on antidepressants" and be magically better.
Tell me whatever you like in a meme, but never come see me. Never spend time with me. Never call to check on me.
Never let me cry with you. Never bring food, or offer to help clean the house. Never go with me to one of my many dr appts. Never consider my dietary restrictions when it comes to having me over. Memes are easy. CARING - ACTUALLY CARING - IS HARD. It's work. And your absence shows me I'm not worth the work to you.
So if I'm not worth it to you, and I'm not worth it to me, what's left?
I've considered deleting this. Numerous times. Because here's another thing about depressed people - we don't want to be a burden. We know how unfun we are now. We don't want to be any more of a burden. So we try to smile FOR YOU. We act fake FOR YOU.
I don't even know what I am trying to say anymore. I haven't showered today, brushed my teeth today, left the couch today. Because what's the point? I've done those things every day for 3 years and yet my vision has never gotten better, my hearing remains damaged, the tinnitus loud, my sense of taste and smell is gone, I fight body-wide pain every day. Despite it being 3 years, I get new and worsening symptoms every 6 months or so. I fight knowing this was DONE TO ME and nothing can undo it - that I've gotten worse, not better, over time. That this deadly "medicine" combo robbed me of my eyes, my ears, my sleep, my properly functioning body, my ability to have children, and my faith - yes my faith is completely gone.
I am alive today because I love Scott Miller and can't leave him because it would hurt him.
That's it. That's all.
And maybe THAT's what I am trying to say.
That one person CAN make a difference.
But that person has to BE THERE. Has to ACTUALLY CARE on more than a surface level. Has to put in the EFFORT.
The rest of this means fuck all.
That special time of year when people who despise each other but share the misfortune of being blood relatives unite under one roof to seethe with bitterness under the guise of Thanksgiving.
How appropriate that a holiday celebrating the coming together of pilgrims and "Indians" - a relationship that would later devolve to mass genocide - should be reenacted 'round our collective dinner tables each year.
What sadist came up with this?
I know I'm not the only one dreading the insensitive comments about politics, religion, life choices. I'm the 4 millionth person this week to point out that "the holidays" can be a difficult time for humans with actual souls.
But I'll try a more original tack here and say something that's really on my mind 24/7, 365:
HOW THE FUCK AM I RELATED TO THESE PEOPLE???
If the facial resemblance wasn't undeniable, I'd swear I had been switched at birth - that my liberal, Jewish, artistic, sensitive, neurotic birth parents who were forced to raise someone else's conservative, evangelical, hardass, Trumpian child are equally confused about it.
Because, for me, the differences between me and my kin go deeper than politics, religion, life choices.
Indeed, those are just outward manifestations of a deeper, inner truth: that - hot temper and dark sense of humor aside - I am literally nothing at all like my birth family, and my inherent difference has been a problem since I emerged from the womb.
A problem for me anyway.
See, while my biological family repeatedly chafes me like an ill-fitting pair of pants (and I'm certain I've caused them a rash or two), they have the good fortune of not giving a fuck about me most days, so those rashes I do inflict have adequate time to heal.
(Overly) sensitive soul that I am, I ne'er seem to take the pants off...opting instead to try to "make them fit," and hurting myself repeatedly - and more - in the process.
You can guess how that's working out for me.
I chafe them. They scar me.
Half the time I cannot decide if I actually love or loathe these people.
But what I do know for sure is that I give them my power.
And that's actually not their fault; it's mine.
My asshole brothers shouldn't be able to say something that ruins my day/week/year.
But they can. And they do.
And, generally speaking, I don't think it bothers them at all.
They haven't the time or inclination to waste on my feelings.
The same can be said of my step siblings and folks.
Maybe that's a healthier way to live - who knows? I certainly don't.
Many's the time I thought: that's it. The straw that broke the camel. I'm washing my hands of the lot of them!
It's the only solution I've come up with to address the truth: that so broken am I - so singed my armor - that the sting of their words and actions repeatedly pierce.
The battle is lost.
Forego the war.
Wanna stop hurting? Avoid those that hurt you.
But the knowledge that even my absence wouldn't effect them just twists the knife.
I've got bookshelves of books on codependence, letting go, boundaries. I've spoken to so many therapists I've lost count.
None of it stems the dread that builds on the car ride to every family function (those to which I am invited anyway).
Thanksgiving's in a few days, and the internal pressure is already mounting.
I'll lose sleep and appetite over the next few days.
And I have no one to blame for that but myself.
I mean - they're not sitting around worrying what abominable thing someone's gonna say or do to them over the course of dinner.
How fortunate for them.
I wish I could be so self-satisfied.
But I'm not.
And whether that's a consequence of my upbringing or merely a manifestation of my nature, I dunno.
All I know is that it hurts.
And that I will be blamed for hurting. I will be told - if my feelings are acknowledged at all - to "man up," something about bootstraps and your-life-is-your-own and all that. That they can't hurt me if I don't let them. That my pain is therefore not their fault for being shitty, but my fault for being so sensitive.
That is the way of things.
For they are the pilgrims, and I am an Indian.
Welcomed at the table today, perhaps, but an obstacle tomorrow.
I dream of walking away, but like as not, I'll be forced out.
Walking my own Trail of Tears.
Because my presence is undesirable, and they need the space to form their own, more perfect nation.
Oh. God. Why am I here?" - Tori Amos
So the past week or so, Atlanta's been rainy and cold, which means I've been housebound and contemplative.
Ask anyone who knows me - that's a bad combination.
Too much time to think (and too little motivation to move), inevitably leads to toxic levels of introspection, the culmination of which is crippling Amazon debt, complete dissatisfaction with my life choices, and the creation of imaginary friends.
Yes, you read that correctly.
I am a grown-ass woman with imaginary friends.
Well, one at the moment anyway.
As far back as I can recall, I've retreated to imagination when the world showed itself to be just too small and banal for my liking.
Which was pretty much always.
While other kids loved other kids, I loved being alone, cerebrally crafting stories about imaginary kids that were cooler, smarter, and had more superpowers than the dummies in my class.
Why would I hang out with second grade Cindy who ate glue off her fingers, when I could rollerblade in my cul-de-sac with mature, sophisticated fourth grade Samantha who I totally made up but who was rad & shared her Beastie Boys tapes (Yes, TAPES!) with me & introduced me to fourth grade boys who were allowed to ride their bikes anywhere in the neighborhood without asking?
You and your Elmer's can go hang with the losers. I'll be over here, feeling superior and talking to myself...
Years passed, but I never shook the habit of imagining myself somewhere else with someone else.
I buried myself in books about remarkable people, situations, and worlds, or, if the person him/herself was not remarkable (Lame!) at least they had remarkable things happen to them.
At night, I would lie awake for hours, crafting scenarios wherein I met fascinating (and often famous) people, and having enviable adventures. From these adventures came the fantasies. The desires. Both of who I wanted to be and of who I wanted to bone.
Handsome men of diverse backgrounds who could take me places and show me things that my little town in suburban Georgia hadn't offered.
Men who always knew what I wanted.
Men who always delivered.
Cindy went on to have real boyfriends, have real pregnancy scares, and try real drugs.
And I continued to think I was oh-so-much smarter than Cindy.
But my externally safe yet internally tumultuous life choices were wreaking their own havoc: I never learned to be satisfied.
Friends and family were a drag. Boyfriends didn't measure up. And, perhaps most crushingly, I didn't measure up either.
I'd created and honed an impossible life goal (or goal life?) and no amount of hard work, study, talent, or luck was going to be able to deliver what I was really looking for: escape.
Endless excitement and discovery.
The emotional equivalent of hardcore drugs: escape from the white-picket-fence, 401K steady job, blase husband, 2.5 kids, church-on-Sunday life I'd been told since ever that I was supposed to want.
That I didn't - that I don't - has caused me untold pain.
It's also why I've befriended people across countless spectrums. Why anyone trying to assess my dating "type" would throw their hands up in frustration. Why I left the suburbs for the city. Why I rejected Christianity for Judaism. Why I abandoned conservativism for liberalism.
So thirsty was I for something other or else.
So thirsty do I remain.
For a stretch there (late 20s - early 30s), I abandoned the fantasies and just went out and lived.
Instead of imagining things - and living within nice, suburban girl boundaries - I was just doing whatever the fuck I wanted.
And it was the best of times; it was the worst of times.
But I felt alive.
Since settling down - and getting sick - I've felt that longing reemerge: subtle at first, but growing stronger over time.
I fight it back - with long walks or activities. Throwing myself out of planes or trying weird delicacies on the menu. Flipping the bathroom...
But lately, I've been spending a lot of time with an imaginary friend.
He understands me.
He challenges me.
He makes me laugh.
He knows just how to approach me...how to touch me.
And why wouldn't he?
He IS me.
The me I want to be...
"Look I'm standing naked before you
Don't you want more than my sex?
I can scream as loud as your last one
But I can't claim innocence.
Oh. God. Could it be the weather? Oh. God. Why am I here?...
Hand me my leather."
But I know I don't deserve it.
I prove this to you every day.
But still you say I'm worth it.
I don't know why you love me.
But I know that I abuse it.
I miss the forest for the trees.
But still you disabuse it.
I don't know why you love me.
But I know I can't undo it.
I try to set you free of me.
But still you're sticking to it.
I don't know why you love me.
But I know that I am lucky.
I live in your grace each day.
But still you never give way.
I don't know why you love me.
But I know that you do.
Days, weeks, months, years have I dedicated to fantasies, most of which I believed to be within my reach.
Fame, fortune, and - most importantly - the mega mouthpiece those things would afford me.
Notoriety. Renown. Love. Sex. Admiration.
I have achieved none of these.
My imagination remains keen, but my prose are lacking.
It is with no pleasure whatsoever I admit I was a better writer 10 years ago.
In part because the world still lay before me then.
In part because I was practicing in one way or another every day.
In part because I didn't have my brain injury then.
But none of these parts accounts for the hole.
That was good at least.
Still, 10 years ago, at what I consider to be my intellectual and physical prime, I pursued my dreams. I wrote. I was on film sets. I was engaged. Active. Hungry.
But my success was limited...largely, I believe, due to my appearance.
I've never been ugly.
To this day, no one has ever crossed the street to avoid me because my face fills them with terror.
But I have always been what one might call "average."
To combat this, I kept up a strict exercise routine for about a decade...and my body was in wonderful shape.
I loved my form, and how strong and lean I felt in it.
But I could never overcome the handicap that was my run-of-the-mill face.
I lost roles because of it.
Industry leaders listened less because of it.
All in all, I have been consistently overlooked because the population's consensus is that there isn't much here to see.
I considered plastic surgery.
Attempted those magic transformations you see in YouTube tutorials.
But none of it was enough to overcome the banality of my features...
I didn't recognize that I was plain until middle school...and even then, I always hoped I'd grow out of it.
I'd seen the "before" pics of celebrities - how awkward their school pics were - and thought my chances of going from ugly duckling to beautiful swan were pretty good.
But middle school turned into high school, and high school to college...and as time passed it became more and more evident that this was me, take it or leave it...
I always imagined my childhood fantasies in first-person POV. So I never imagined how my face would ACTUALLY look on various scenarios. At the time, I was innocent enough not to realize the role beauty would play in my life...and the role it plays in the life of every woman.
But even in elementary school, I noticed that the girls in class who were the best liked also happened to be the prettiest, and, as you can rightly guess, that continues to be the case.
Just yesterday I was reading article wherein beautiful people tell the rest of us what it's like to be really, really ridiculously good looking.
It was about what you'd expect - you make friends easily; you're offered jobs despite not being qualified; you're stared at; you're asked out a lot; you never pay for your own drinks; you always get free stuff.
As I read, I found myself longing for that beautiful face I'd always wanted. The faces of my popular friends I'd envied. The faces of the girls who went up against me in auditions and always got the part because, though I had ore acting chops, they had a prettier face, and it was only 2 lines anyway, why not give it to the eye candy?
When casting my own short film, I chose two beautiful young women. And, despite my status as director, more credence was given to the actresses than to me by the all-male crew.
That was just the way of things.
Beauty opens doors.
And while there have been plenty of ugly famous people, most of them have been so remarkably talented that they overcame their physical shortcomings.
I acknowledge it: I am not that talented.
Which is one of about a million reasons I left the film/television industry.
But this albatross still follows me.
Both of my sisters are/were knock-outs. So growing up I saw how differently strangers reacted to them than to me.
Just standing side-by-side - no words exchanged, so no personality bias - they'd get the stares, the smiles, the freebies from the barista.
I was always "the funny one."
I hoped this would one day be enough for me.
I know beauty fades. I know those women who are knockouts at 20 will turn 60 one day and they will have to deal with how cruel the world is to flowers that have faded.
I don't envy the beautiful people this loss.
But if they say it is better to have loved and lost than to never have loved at all - can't the same be said of beauty?
Is it not better to have experienced life as a beauty than to never know the feeling at all?
I wouldn't know. Couldn't tell ya. Cause I've never been beautiful.
Given all my current health challenges, lamenting my lack of physical appeal is trivial.
I know this.
I'd give anything now to be able to see clearly, or have a decent night's sleep, or be able to adequately feel my hands and feet.
So many aspects of my health I took for granted prior to FQAD.
And really, I should focus on those.
But I've spent the past three years focusing on those, and now I'd rather focus on something - anything - else.
wisdom says I should focus on something I can control. And appearance definitely doesn't fall into that category.
I should write and read every day.
Build back my vocabulary.
Challenge myself to little projects.
I can imagine myself doing these things, and doing them successfully.
And yet again the fantasies come - recognition, fame, validation.
But all of my fantasies are first-person POV.
In my fantasies I control how people react to me.
I'm the one getting the smiles, the friends, the jobs I am not qualified for, the free stuff.
But then I go to start my day, and I see my true reflection in the mirror.
And I know none of those things are coming my way.
As not even I can imagine a world in which my appearance would lend itself to success.
I sensed the ambush immediately.
“Um…hi,” says my mother’s coworker, “I heard you might be looking for a job. My daughter’s company is hiring.”
I have been disabled for three years now, and while it has always been my goal to return to work “as soon as I recover,” that recovery hasn’t come. If we’re being honest, I’m sicker now than I was three years ago.
Not that any of this matters to my mother.
She, like so many others, just doesn’t understand.
Like most reasonably healthy people, my mother has never been sick more than a week or two at a time, so she doesn’t comprehend – and how could she? – an illness that sets up shop and never leaves.
She thinks that she is helping. That, because she saw me last week, and I was able to share a meal – laugh, joke, have one of our inevitable arguments – that surely I have recovered enough to return to the workforce. Surely I can now hold down steady employment (so long as it’s not too labor intensive). Surely we can all return to the normalcy that I enjoyed (and took for granted) prior to that fateful day I fell ill and never recovered.
She wants that for me. Everyone does. I want it for myself.
But it hasn’t happened.
It’s the Chronic Illness Catch 22: if you’re sick and you show it, most folks flee. No one wants to be around. It’s too frightening. It’s too depressing. But if you’re sick and you hide it – pretend you’re feeling okay, so you can muddle through even one iota of what you were capable of as a healthy person – then others see someone who isn’t really sick; someone who could and should return to those healthy-person activities of days-gone-by.
This Catch 22 is unique to chronic illness sufferers, and it’s something I wish more healthy people understood. Since beginning my own journey, I’ve met hundreds of chronic illness sufferers and they all say the same: some days are better than others, and sometimes I just fake it.
Depending on the disease(s), some sufferers will be able to meet you for coffee Monday but be completely unable Tuesday. You may see one of us shopping for groceries Wednesday, but what you don’t see is the day spent in bed Thursday, Friday, maybe even Saturday because we made the extra effort. We may look nice, healthy, happy at the wedding but how many days and how many drugs did it take to get us there? And what was the fallout afterward?
I tried, in vain, to explain this to the coworker, as she insisted the work she was offering was “easy” as it “merely” required I sit at a desk and answer phones for eight hours a day.
She was polite, but I could tell by her tone that she didn’t understand.
And how could she? This is the Chronic Illness Catch 22, and she, like most reasonably healthy people, has never been sick more than a week or two at a time. Like my mother and so many others, she doesn’t comprehend an illness that sets up shop and never leaves.
She hangs up and returns to work. I hang up and return to the couch. Last night was another one with no sleep. My neuropathy is acting up, so I will use my TENS unit, or maybe just some ice. I’ll take the meds if I have to, but for now I need to rest. This evening there’s a mandatory meeting, and that will require all my energy and focus.
I bet no one there will even know I’m sick.
That's the Catch 22.
Perhaps unbelievably (and, thus, ironically) so.
In truth I'm told I'm entirely too truthful.
Truthful to the point of tactless.
Damn-the-torpedoes, full-speed-forthright. That's me.
And it's ruined many a mint-julep; bless my poor, southern heart.
Given my penchant and reputation for (brutal) honesty (whether the situation in question warrants it or no), I've been shocked to discover that, even among those who know me well, my candid straight-shooting is viewed with skepticism - my recollections and motives questioned.
Most often by those persons in my sphere that I know to be liars themselves.
I've been ruminating on this phenomenon for years, revisiting episodes in the past where my entirely truthful tellings are called into question by the very persons I wouldn't trust alone in a room with the family silver.
Fruitlessly have I sought to understand the Doubting Thomases of my inner circle.
Endlessly have I doubled-down on examples and witnesses. Studies. Anything "official" to corroborate events I know to be 100% true to my recollection.
I don't lie (often).
And when I do, I usually admit it, because lies stick in my craw, and my shoulder angel is relentless in her criticism, harsh in her flogging.
I have to be truthful...because I loathe being lied to...and those who engage in the very behaviors they decry - those whose lives are a study in hypocrisy - are repellant to me.
If truth is my first master, hypocrisy is my hill-to-die-on pet peeve.
And it's why I am so often tactless.
I simply cannot let hypocrisy lie.
I've been branded a liar by numerous doctors, whose hubris will not allow them to admit that my truth - that a medication, not any inbourne illness - crippled me three years ago.
In vain do I present the studies - my evidence - the research - in asking for help.
My heart breaks when I hear similar stories from others who were likewise damaged or have chronic illness.
Apparently, in the medical arena, disbelief on behalf of doctors is standard - the go-to response when some M.D. doesn't know what's wrong, and would rather pawn the patient than admit that truth.
So there, at least, I suppose I am "in the clear."
It's not me.
But try as I might, I have, as yet, been unable or unwilling to accept that same truth about those Doubting Thomases in my family.
My family, who have repeatedly hurt me in one way or other since birth, are quick with the brush-off where I'm concerned. My recollections are suspect; my memories, incorrect. Their trespasses are, instead, MY failing, because I was too weak or too sensitive or too...hell I dunno...DIFFERENT to be credible.
The very events that shaped me - cut me to my core and changed me - are the experiences they don't or won't acknowledge.
And this pattern of behavior has plagued me since I can remember.
It plagues me because I am among the most forthright people I know - not just aware of my flaws, but clinically depressed by them. I, above all people, know just how far I fall from perfection. (Hint: It's FAR.)
But when I say something, I mean it.
When I say something, 99 times out of 100, it's true.
You'd think that'd carry more weight with these people, but it doesn't.
Because the moment my truth shines light on something they don't want to see, the only solution is to bury me.
It's taken me until now to grasp it - that the problem is not with me but with them.
I can hold up a mirror to their hypocrisy, but they turn from the reflection there - preferring instead to compliment the Emperor on his new clothes, and make plans to get themselves a matching set.
I'm that kid in the crowd that shouts that the Emperor is naked.
And rather than believe, they continue with the charade parade, and belittle me because I refuse to join.
They want me to confirm the lie - to double-down, strip down, because that is what they do.
That is what they know.
And, when I refuse, as I inevitably do, I am the problem. I am the thorn.
In their eyes, it's my fault that I am not accepted. Because if I wanted to be accepted, I'd join them, gladly, in their parade.
That I see it all for what it is - somehow that's on me. Somehow that's my failing.
And I am punished accordingly.
In the PolitiFact review of my life, my "Pants on Fire" findings would be low.
Perhaps that is unfortunate.
For the world is often unkind to those who rise above in any area.
It tears apart the chaste, the intelligent, the wise, the good.
Ask Socrates if you don't believe me.
That I don't lie makes them uncomfortable.
It's a cognitive dissonance they cannot overcome.
If they believed, they'd have to change, and I'm finally giving up on them ever changing.
They'll continue to claim Jesus and live his antithesis.
They'll follow the Emperor down the street in no clothes.
They'll blame me for sitting this one out - for seeing what they are unable or unwilling to see. They'll blame me. They'll blame me. They'll blame me.
Which means I have a choice to make.
I can love them as they are.
Or I can leave, because I cannot change them.
And yet another thing I know they simply won't accept...because they're unable to comprehend the truth of it.
Bestie: Eh. She always struck me as really self-centered, so I kinda don't care how Friend X is doing.
Me: *stunned silence*
I always see the best in people.
Scratch that -
I always see the *potential* best in people, and it bites me in the ass.
More than once - and in the case of Friend X above - it's resulted in some "friend" making moves on my boyfriend. And breaking my heart two ways in the process.
Yes, seeing the potential in people - instead of who they actually are in the moment - granted me the gifts of being cheated on, dating drug addicts ("But he's such a good person. You just don't know the real him! When he's not on the cocaine, he's brilliant!"), attention whores, and manic depressives, and being stabbed in the back by a "friend" more often than I can count.
And now - approaching 40 at ramming speed - I find I am little better equipped to handle the who they are vs who they could be debacle than I was as a trusting teen.
I've grown more wary (and more jaded), but comments like my Bestie's still shock because, despite knowing Friend X for 2 solid decades, the truth of who she is never dawned on me.
Such truths never dawn on me, no matter how many obvious signs I've been given along the way.
I have an uncanny knack for knowing who the killer is.
I can usually tell you within the first 5 minutes of the film.
I'm incessantly bored at the cinema, because I instinctively know how shit's gonna play out...
But, when it comes to real life it's like I can't see the script.
I'm the idiot who wanders into the dark basement, alone, with some antiquated torch that's destined to go out, repeating, "Hello? Who's down here?" so the killer knows my exact location.
I'd be the first one dead.
And, because I'm not much to look at, I wouldn't even be the one in the white shirt in the rain...
Many say it's a strength of character - seeing the good in other people, despite circumstance.
But I see it as a weakness.
I can't tell you how much pain I'd have saved myself if I'd just picked up on what was obvious to everyone else.
Like in the case of Friend X - when I was still dating...such was my experience with Friend X and her throwing herself at my boyfriends, that it became a test of mine: if I really liked someone, I'd bring them around Friend X. If they took her bait - because it was a foregone conclusion she'd offer up "the bait" - then my heart would break, but I'd know he wasn't the guy for me.
I actually participated in this.
And didn't cut her off.
And what's worse?
I saw Friend X about a year ago. And the conversation basically consisted of:
"Friend X! I haven't seen you for ages! Gosh, how I've missed you! We simply must hang out again! When are you free?"
And I meant it.
This says something about my boundaries - or lack thereof - I just know it.
It says something about my self-care.
About my childlike trust.
About my own addiction to emotional pain.
It says something - though I don't know exactly what - about my own need to love and be loved.
It speaks to my empathy and forgiveness...though if we're honest with ourselves I never fully forgive.
I haven't forgotten how often Friend X hurt me...and I don't necessarily put that hurt aside to be in her presence.
I do the SUPER broken thing, and hang with her, mixing the pleasure with the pain.
Like some sort of emotional masochist.
All the while remaining totally oblivious to the fact that she's probably sending me even more obvious signals as to her next betrayal - and I'm not registering them.
Because I just can't see it.
In this life of The Scorpion and The Frog, I am very much the frog, ferrying scorpions across the river and being continuously shocked when the scorpions do as scorpions must.
I'm pretty sure that makes me some kind of idiot.
Those who chose to draw near to your detrimental traits won't allow you to abandon those traits easily.
They want you mired in the mud of your past.
Because that's where they reside.
Don't listen to critics of your progress.
But it ISN'T enough.
Belief is nothing without ACTION. No one ever changed the world by thinking - but not doing - the right things.
Every new treatment offers the hope of relief, but each comes with a list of potential complications that can have you asking if the "cure" might be worse than the disease.
Especially when those drugs could cause life-long disabilites.
It's a terrifying gamble, and, even if you keep your life and avoid life-long complications, medicine remains a potential minefield.
Since the onset of my rare, chronic illness in 2015, I've seen all of the specialists and been given all of the drugs. But none of them have worked long-term. And most have caused a slew of other problems.
What alleviates one symptom will cause or exacerbate another. Pill X helps the nausea but causes constipation; Pill Y helps the pain but brings on palpitations... And after a few months, neither pill is providing the benefits it once did.
I know I am not alone.
For every warrior I know with a successful medication regimen, there's at least one that's tried everything but had no luck. For those folks - folks like me - everything is a trade off. Do I suffer with the nausea today, or do I take Pill X to tackle it, knowing that all the Metamucil in the world won't save me from the fallout?
There's no such thing as simple relief.
Everything is a trade-off.
And then, as it inevitably does, the day will come when I take Pill X for the nausea, and it no longer helps. Heart in my shoes, I'll return to the doctor to tell him/her that, yet again, my body - which cannot seem to figure out how to get healthy but always finds a work-around for medication efficacy - has ceased responding.
"What are my other options?," I ask.
Lately I've exhausted the list.
In the three years I've been chronically ill, I've undergone every recommended treatment I could afford. This includes rolling the dice on a slew of medications, hoping for the best, fearing the worst, and usually experiencing something in between.
But what I haven't experienced yet is relief.
I'll keep trying. I haven't given up hope that relief is out there - that the cure or at least a mitigator is just around the bend.
If and when it arrives, I'll welcome it gladly.
But I won't be surprised if it causes constipation and palpitations.
I had a reaction after the first pill - and I spent at least 2.5 of the past 3 years berating myself for continuing the Cipro and the medications that followed that left me disabled.
I have PTSD.
Year 1 was spent on the FQAD boards, listening to the healing stories of others, counting the days/weeks/months, charting any perceived progress, noting every symptom, seeing every specialist, praying for miracles.
Year two was spent in increased horror and pain. Not only was I not getting better, but new symptoms continued to come on. I was, undeniably, getting worse.
I left the boards. I could no longer cope with the stories of healing. I could no longer stomach the reassurances: "I was really bad for a year, but then I got better! Just wait a year!" and then "It took me about 18 months. Juts hold on until 18 months!" and then "Two years is when many of the worst cases start to improve."
At 28 months, my dysautonomia - Cipro damages your nervous system, including your autonomic nervous system - I suddenly became unable to breathe. I always felt I was gasping for air. Blood work showed I had too much H20 and not enough CO2. I was told I was having panic attacks. But it wasn't panic. My autonomic nervous system just forgot how to breathe for about 2.5 months.
At the end of May I got a short reprieve - for about two weeks I was actually feeling better. My pain had diminished. I could breathe. My hair stopped falling out. I dared to be hopeful. Was this the promised healing others spoke about?
Around June 1 it all came crashing down. My peripheral neuropathy, which had been limited to burning pains in my hands and feet while at rest, erupted overnight to include the entirety of my body. Everything. Arms, legs, face, trunk. What's left of my hair would have pins & needles/burning if it could, I swear it.
I hoped it was a flair. I hoped it'd die down in a few days.
Within weeks I could no longer feel hot/cold in my hands and feet.
I can no longer feel my big toes at all.
It's difficult to walk when you can't feel the ground properly.
Long walks have always been my way of dealing with things...
It's been 8 weeks now - 8 weeks of continued damage to my nerves, damage which may be irreparable.
There is no cure for neuropathy. Once the nerves are dead, that's it.
Doctors label my neuropathy as idiopathic.
They refuse to believe it was the Cipro, even though the warnings about it are right there in the RX packet.
With medication-induced neuropathy, there are not even lifestyle changes (like getting one's diabetes under control) that can stop the insidious spread.
I am scared.
But that's really nothing new.
I've been scared - utterly terrified - for the past 3 years as, one-by-one, and sometimes seven-by-seven, the new symptoms came on. As my various body systems shut down or malfunctioned.
They'll give me meds for the symptoms, but my body doesn't respond correctly to meds anymore...
Even Tylenol affects me now...
If you'd told me 3 years ago I'd be sick for 3 straight years - and, as is obvious now, longer - I think I might've ended it all.
But you don't know what you can endure until you endure it.
It's only hope that's kept me going thusfar.
Hope and my wonderful husband.
Don't get me wrong - life is beautiful. I want to live it.
And that's the saddest part.
My life now mainly consists of sitting on the couch, battling back a dozen or so symptoms at a time, trying to adapt to a series of ever-undulating terrors.
These two months it's been the progressing neuropathy and its implications for my long-term disability. Six months from now, who knows? Maybe I will cease to be able to breathe again...or have the body-wide tendonopathy again...or lose my sense of taste and smell again.
I don't know how many read this.
I don't know if it'll make any difference.
But to me, it makes all the difference in the world.
Every life is precious.
My life is precious
and worth saving.
I wish I could convince medical researchers of this.
For those of us permanently disabled by FQs - people like Neal Travis, Michael Kafferly, Cheri Haddon, the guy from CiproIsPoison.com - our lives are worth saving.
I've spent 3 years hoping someone would step forward, willing to work to save our lives.
I continue to hope.
It's only hope that's kept me going thusfar.
If you haven't seen the film, it's little wonder you live each day questioning "What does it all mean?"
The rest of us - those learned folks who've seen the cartoon wherein Mia Farrow falls for prince Jeff Bridges and becomes the only unicorn in existence to understand the concept of regret, soundtrack by America - don't know the answer to "What does it all mean?" either, but at least we have a solid point of reference.
So today, as with most days, I found myself once again contemplating my failing health and the inadequacies of the modern health system, when - obviously not for the first time - a scene from "The Last Unicorn" played in my head and offered some insight.
In the film, most humans cannot see unicorns. Instead, where a unicorn stands, they only see a white mare.
Mommy Fortuna, a witch voiced by Angela Lansbury, can see unicorns, but, knowing that most folks can't, she sagely casts a spell giving the unicorn a faux horn for the plebs.
When Farrow questions the choice, Lansbury explains, "Do you think those fools knew you, without any help from me? Ha ha ha! No! I had to give you a horn they could see!"
While the implications of this - that most human beings cannot see the magic that surrounds them - are plain, to me, today, this scene speaks to my experiences with the healthcare system.
My symptoms are real, and frightening, and debilitating.
But often they are not measurable by standard medical testing.
Those that are routinely come back indicating that something is wrong, but those tests are repeatedly passed off by doctors as blips, anxiety reactions, idiopathic, or indicative of something that "should pass any day now."
But the abnormal results - the daily fevers, the variable blood pressure and heart rate, the elevated immunoglobulans that indicate my body is constantly fighting off an infection, the spreading small fibre neuropathy - they don't pass. Theyr'e constant.
And because no one can explain it, I'm dismissed or shuffled off onto another specialist.
Few offer help.
None offer hope.
Thus this scene in "The Last Unicorn."
Like Farrow, when doctors look at me and my illness, they see a white mare.
The signs are all there - signs that there's something different about this mare - signs that in the puzzle of life as we know it, this piece doesn't fit - but those signs are ignored.
"White mare, white mare, white mare," is all the doctors say and see.
And until a medical magician - a Mommy Fortuna with a parlor trick - comes upon me and slaps upon me a horn that other doctors can see, this white mare diagnosis will continue.
Like those in the decades before me who suffered invisible illnesses like Fibromyalgia, I will continue to be ignored until the science catches up with the symptoms.
I just hope that I will live to see that day.
And, if I do live to see it, that it will not be too late to save me from this daily nightmare.
more perfect than mine,
so I made one up
and called Him divine.
I wanted a father
and so I assigned
those things that I needed
to one I designed.
I rang every evening
imagined His mind
of wisdom and honor
a heart pure and kind.
I asked His allegiance
and I pledged Him mine.
'Twas faith as I knew it
but o'er decades' time
the incessant silence
was His only "sign."
So I have resigned.
I am resigned.
I wanted a father
more perfect than mine
so I made one up
and called him divine
I wanted a father
and so I assigned
But I have resigned.
I am resigned.
for that's where Pisces go
Let Aries flame 'neath the crust
Let Gemini winds blow.
Return me to the water
a pisces fully claimed
by darkness that I never left
- the oubliette to which I'm cleft -
despite bipedal gain.
Return me to the water
that I might be reborn
Not as ashes of the earth
no more of Capricorn!
Leave me to the water
for that's where Pisces die
the currents there compose my wake
Samsara standing by.
you may go.
I won't miss you.
Your 31 days
hurt 31 ways.
I just thought that you should know.
Your 31 days
hurt 31 ways
I won't miss you.
You can go.
Not, like, in the "woe-is-me-I-don't-got-no-friends" way of lonely.
This loneliness is deeper.
More along the lines of lying-on-your-deathbed-knowing-you're-finishing-this-journey-alone kind of lonely.
I use words to express how I feel, but you will never really know how I feel.
I use words to tell you what I see and think, but you will never really know what I see and think.
You will never really know me.
And I will never really know you.
Which has always been the way of things.
Each of us is a secret - one that will be kept until we die - one that will only ever be fully known by the very person the secret embodies.
That's nice imagery.
But you'll never see that imagery the way I see it.
I don't want to be a secret unto myself anymore.
I WANT to be known.
I want every person on this grassy orb to see what I see, feel what I feel, know what I know.
And I'd like to return the favor.
I wanna know what joy feels like to you.
I wanna know if your red and my red are the same.
I wanna taste your sweet and sweat your salt.
I wanna breathe your breath and beat your heart.
What does it feel like to laugh like you?
To cough like you?
To fawn and scream and fart like you?
What does "home" feel like for you?
What's it like to actually like golf?
I don't want to be a secret unto myself anymore.
I don't want to be lonely anymore.
Sure, I'm a pessimist at heart, and, sure, this tendency toward the negative likely colors my view.
But I know I am not alone.
As many have said before me, "If you're not outraged, you're not paying attention."
There's lots of good going on in the world.
But most often we're bombarded with the bad.
And maybe that makes sense.
Bad sells papers.
And even that fact ^^^ illustrates my point.
Just another piece of knowledge to be sad about - that human beings, on the whole, flock to the negative.
As I do.
But I digress.
Negatives sell news - and, after all, what is one person's giving to a food bank, when corporations are polluting the environment, and ruining it for all 7+ billion people on the planet?
What good do solar advancements do, when the government actively works against them in favor of antiquated energy sources that literally kill people (the Black Lung. Look it up.)
I've always been told that one can only control onesself.
That to do a good deed is to, in some small way, set the world right.
But I've gone off down a path I didn't intend to tread when I started this missive.
No, what I came to say is this:
If I - a 37-year-old woman with a decent brain and internet access - am dismayed at the world, and if any of you feel a fraction of the disappointment I feel about how humanity is basically a cesspool of selfishness, then I think we all need to stop for a second and give empathy where it's due:
For truly, if He (She? It?) is all-knowing, then He/She/It must be fucking miserable
Can you even imagine the futility of seeing humanity spinning its wheels, knowing, without doubt, it's not going anywhere?
Or even if it is heading someplace, knowing already the destination and the outcome, but still having to watch the cruelty play out in real time?
Honestly, it's a wonder God hasn't offed himself to this point.
But Erin, you ask, "What about Free Will? Maybe God doesn't know how things will play out. Maybe He/She?It is relying on us to make the choices and shape the future!"
To this I reply, gesturing to everything around me, "Have you SEEN the choices people make? If the future is up to us as a species We. Are. Doomed."
But maybe God's an optimist.
Maybe He/She/It sees the soup kitchen as offsetting the destruction of the entire planet.
Maybe, to Him/Her/It, it'll just all come out in the wash...
Maybe, He/She/It has a subscription to cosmic Netflix and, instead of watching us kill each other, binges on celestial comedies?
Maybe He/She/It is a cutter.
I guess what I am saying is, I dunno how God copes.
It's all I can do, with my limited exposure, to make it through a day, and God has the (mis)fortune of seeing all of our shit 24/7, 365.
If it hasn't happened already, I'm pretty sure this is where the Jesus convo comes into play.
And I haven't the time, the energy, or the desire to get into how convenient it is to have a human God destined to show up eventually to save the day...deus ex machina much?...so I'll just answer with an aspect of Judaism I've always liked:
Live each day as if there is no God, and therefore all good things that are to come are dependent solely on you.
In other words - don't sleep tight relying on Jesus to clean up your mess.
Clean up your own fucking mess.
And try not to make another one.
But I've veered down a side road again.
Add it to the list of human mistakes I make that reek to high heaven.
And, with that, it seems we have come full-circle.
The Rolling Stones have a song about sympathy for the Devil.
But maybe it's time we give God some of that pity.
Because I cannot imagine a worse punishment than being all-knowing.
For about three years now, I have wanted to know, for sure, if I would heal from my disability.
But, in looking back, it's probably a blessing I wasn't told.
Because if you told me three years ago that by May of 2017 I'd still be sick - that my vision wouldn't recover, that the tinnitus wouldn't cease, that my sleep would still be fractured, and about the continuous and innumerable pains/malfunctions, I would have killed myself.
I would have given up all hope and ceased eating.
I'd have dwindled away to nothing.
But because I did not know, I lived each day in hope.
That hope, even if only briefly, would scare away the darkness, and allow me to live another day.
That hope keeps me going still, even though it is routinely dashed - another of life's cruelties - when each day brings no measure progress.
And that's the tragedy of omniscience - it doesn't allow for hope.
If one already knows the outcome of everything - even if that outcome is good - it doesn't allow for hope.
So God will never know the thing with feathers
that perches in the soul.
He/She/It will never hear the tune without the words
that never stops - at all.
That's is, perhaps, the saddest thing I have ever contemplated.
Because God IS hope to most of the people I know.
God is MY hope of ever beating this disability.
God is the source of rest from all our suffering.
But who is there to tend God's suffering?
What hope is there to ease His fears?
Can our sympathy provide Him comfort?
Or, as He already knew the sympathy was coming, will it calm no sorrows and dry no tears?
Despite already knowing the outcome, does God cry?
Maybe you'd go talk to that cute guy in your Spanish class.
Or have studied harder for that crucial exam.
Or foregone the Achy Breaky Heart mullet that seemed like such a good idea at the time...
But while everyone on God's green earth would welcome a do-over of some sort or other, there are those of us walking among you for whom a second chance would be inarguably life-changing.
I am one such person.
My friend *Julie (not her real name) is another.
Nine years ago, Julie was about five months pregnant.
While driving home from work, she decided to go to the grocery store - but which one?
Publix was closer, but more expensive...and Kroger, cheaper, was on the way home...
She chose Kroger, and, within minutes, was hit by a teen driver who was texting and not watching the road.
Julie was severely injured, and she lost her baby.
To this day, Julie wonders what would have happened had she chosen Publix over Kroger.
Such a small choice, seemingly, at the time, had enormous, life-altering consequences.
I imagine it's the same for vets who lost a limb in battle. "If only I'd been a foot to the right"...
Or people who overlooked mundane symptoms - "It's just a headache" - only to suffer a crippling stroke.
People who, despite wanting to reconnect, continued estrangements only to learn one black day of the unexpected death of the estranged...
Or people, like myself, who placed their bodies in the hands of doctors, who botched treatments and ruined or ended lives.
In "Field of Dreams," Ray Kinsella is given the impossible - the chance to right a wrong from his past. Ray is given a gift that we dare to hope for but will never receive: a do-over.
The rest of us don't get a magic baseball field in the corn.
We have to live - or slowly die - with the consequences of our choices.
Some might say this is only fair.
But I'd ask those "some" to say that to my friend Julie, for whom wanting to save a couple of bucks put her in the wrong place at the wrong time and cost her...immeasurably.
Or to people like me who, by conventional wisdom, did as a patient is expected to do. Acquiesced when the doctor suggested treatment.
In other words, say that to people exactly like you, who were harmed by unforeseen rolls of the dice.
Each day we make choices. And choices have consequences.
If you're lucky, the consequences are good, neutral, or - if bad - minimally so.
But as you go about your busy day, please take a moment to think of those of us for whom a seemingly innocuous roll of the dice resulted in ultimate tragedy.
Give us your empathy.
Empathy is a good choice.
Whose only DESIRE
to sit and CONSPIRE
Yes YOU -
With your credit card bills
and your kids that won't mind
With your dead-end job
and that "break" you can't find
With your layabout spouse
and your extra ten pounds
and your check that just bounced
That you -
Yes YOU -
with a home to come home to
roof over your head
as you tuck them in bed
With the shirt on your back
and the shoes on your feet
your steady paycheck
and your plenty to eat
of God's chosen flock.
Your life is the envy
of those on your block
And your block is the envy
of those down the street
each one of your blessings
the envy of someone you meet.
So remember, my friend
when lamenting your lot
There are millions of us
who would love what you've got.
Because your little bit
is really a lot.
Just a thought. Just a thought.
Or - more correctly - the evolution of my understanding of love.
In my 20s I succumbed to the butterflies, the is-he-going-to-calls, and the "love conquers all" belief oft peddled in dime-store romances.
The result - lots of passion. Lots of depression. Lots of tolerating intolerable behavior waiting for the day when love would overcome alcoholism. Or drug addiction. Or womanizing...
Helpful hint for my current 20-somethings: LOVE DON'T WORK THAT WAY.
Inevitably, after every breakup, I'd go crying to my father, who always offered the same advice: "Why don't you date someone YOU DON'T HAVE TO CHANGE? A MAN IS NOT A PROJECT."
But what did he know?
He just didn't understand.
He didn't FEEL what I FELT.
And that's where my 30s - and meeting my husband - has been such a revelation for me.
First thing's first: love is not about feelings.
Feelings may come as part of the package, but butterflies in the stomach does not love mean.
Often, in my life anyway, the butterflies came with mean love - love with too many strings. Love with uncompromising compromises. In short, not LOVE at all.
It took me 15 years of dating to discover this simple truth: that feelings, while genuine, are not the be-all and end-all barometer of love. Especially if those feelings are obsessive, and cause you to doubt yourself and your worth.
Somewhere around age 30/31 I started exploring not who I had always been told I was, but WHO I ACTUALLY WAS.
What did MY heart know to be true - even if it ran counter to everything I'd been taught.
During this process of self-discovery, I moved to a place of my own, without the comfort of roommates or a boyfriend. I pursued my graduate degree completely on my own. I discovered Judaism and its role in my life. I abandoned old dreams that died in the face of reality and accepted things about myself that I had resisted for...the entirety of my life.
And, for the first time, I made a list of what I wanted in a man, and what I would not, under any circumstances, accept in a man.
And I stuck to it.
And I met Scott.
While it would make for a lovely dime-store romance to say it was love at first sight, it wasn't.
And thank God.
As someone who analyzes everything to death, I wouldn't have been able to live with a love-at-first-sight situation.
I liked Scott. He liked me. He fit my criteria. He didn't raise the immediate red flags. We decided to see each other again.
The beginning was rough. I had my guard up. I wasn't going to give my heart away again easily - no sir!
But about 3 months into the relationship, I found out I had a tumor that was going to require surgery.
That surgery would require three weeks of bed rest/recovery.
I would require help.
And Scott volunteered.
Sill skeptical, I thought this would be the end of the relationship.
He'd see me, unshowered, cut open, with an unending list of needs including help showering, help cooking...help...ugh...toileting.
I thought our relationship had an expiration date.
And that date was the date of my surgery.
But the surgery came and went, and Scott never left my side.
He didn't abandon me at my (then) worst, and I didn't tire of him or want him to go away.
The whole three week period he didn't make my stomach flip - not with excitement, as I dreaded what was happening, but not with fear either. After the first few days I was no longer afraid this man would turn tail and run.
And it was so...comfortable.
My friends, love is COMFORTABLE.
And that's something I never "got."
I thought love was supposed to be like your sexiest going out outfit - a hot, passionate, edge-of-your-seat, what's-going-to-happen, ensemble that hugged your curves and hid your flaws.
Friends, love - true love - is like your favorite pajamas - soft, comfortable. Incapable of hiding flaws but instead warmly embracing those flaws.
Love isn't waking up next to someone you hope will give you approval.
Love is waking up wanting coffee and biscuits, because whether or not you have approval never even crosses your mind.
Passion is loud.
Love is quiet.
Now that I know this in my romantic relationship, I am better able to see it in other established relationships as well.
My body will intrinsically tell me now if someone is a true friend - it's an easy test: am I wholly, unapologetically myself around them, or, do I mind myself to make the best impression?
My comfy PJ people are my friends, the others...aren't.
In my 20s I would not have accepted this.
In my 30s it hurts, but I know it to be true.
Throughout my 20s, I'd revisit the Bible verse that laid out what love is. As I was always seeking love, committing centuries-old wisdom about it to memory seemed as good an idea as any.
Anyone who's ever been to a Christian wedding will be familiar with this verse:
1 Corinthians 13: 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
I may be a Jew, but the Christians have this one correct (unsurprising, as the first Christians were Jews...but I digress!)
And this understanding of love I've come to - that love is quiet, calm, serine, wise - reminds me of characterizations I've heard about the nature of God.
He is mentioned as being a still, small voice in the heart and mind.
He is called Love.
This is an aspect of love I continue to struggle to understand.
A God of love and a world of suffering...
They seem incompatible, and that raises all kinds of questions...
But I delight in the questions. That is who I am.
And I discovered that - and embraced it - in my 30s.
Perhaps by my 40s I'll have a better grasp of agape (<- Godly love. Not standing with your mouth open.)
Until then, I'm satisfied with my current rate of progress.
And fear drives our actions.
I truly believe that the key to inner peace - and world peace - relies on living life without fear.
If you don't fear your neighbor, you cannot and will not hate your neighbor.
If you refuse fear, death has no sting.
I live each day in fear.
I fear what my body will or won't do to me each day.
I fear the resurgence of antisemitism and what it means for my family.
I fear my inadequacies and flaws will render me unlovable.
I fear all this - human suffering - is for nothing.
But what if I wasn't afraid?
What if my body's malfunctions did not phase me? What if I were able to embrace my decay as beautiful, natural, inevitable, and GOOD?
What if, in the face of threats by those who would have the Jews wiped from the earth, I felt only compassion? Pity? Love?
What if, instead of fearing I'm too flawed to be loved, I chose the peace that comes with knowing I am a human being - and that, just BY being - I am a living testament of love? Of survival of the fittest? Of eons of evolution?
What if all of this human suffering IS for nothing? What's to fear there?
My life, in the grand scheme, may not mean a thing. But I got to touch an elephant. To smell a flower. To put my feet in the Jordan River.
And that is enough.
It is enough.
One of the many symptoms of my Fluoroquinolone Associated Disability (FQAD) is something many would consider benign - an inconvenience maybe, but not a big deal in the grand scheme.
Many would be wrong.
I completely lost my sense of smell and taste.
During the first year post-"flox" - I lost my sense of smell and taste for 6 months...but after that half-year, it came back.
I was unbelievably grateful for this, and considered it one of the few aspects of my illness to have rectified itself.
But a few months ago, these senses disappeared again.
And they haven't come back.
In addition to being emotionally devastating - I cannot smell the flowers. Or coffee. Or any of the other millions of smells that consistently brought me joy - this is a bad sign.
It's a bad sign for my recovery but - worse - loss of taste and smell is considered an early sign of debilitating neurological diseases including Alzheimer's and Parkinson's.
My grandfather died of Parkinson's, and watching him waste away was sobering and terrifying.
I remember thinking that, were I to ever develop Parkinson's, I'd rather die than live the life my grandfather had in his later years.
Now that Parkinson's seems like a real possibility...
Prior to FQAD, I had an extraordinary sense of smell.
Silly as it sounds, it was a source of pride for me.
That and my 20/20 vision.
FQAD robbed me of that too...
In fact, prior to FQAD I was a wonderful sleeper, had a beautiful head of hair, oily skin, no pain, perfect eyesight, sense of smell, vision...
FQAD took all of this.
All of this and more.
And to my knowledge, medical science isn't even studying FQAD, much less proposing cures.
Purim is the Jewish holiday celebrating the Biblical book of Esther.
Basically "They tried to kill us. They failed. We won. Let's eat, drink, put on costumes, and throw a raucous party."
In the lexicon of Jewish holidays, Purim is a fun one.
Like Jewish Mardi Gras...
But, while today is a celebration of Jewish triumph over those forces that wanted to see us exterminated, I'm not feeling particularly celebratory or fun...
CNN reported today - or, at least, I saw it today - that the shooter in Parkland, Florida, had carved swastikas into his guns, which he then used to mow down 17 innocent people, many of them Jews.
Again today, NPR is reporting that, "Anti-Semitic Incidents See Largest Single-Year Increase On Record" an ADL audit finds.
In France, a rabbi's baby was just subjected to an acid attack.
All of this, and much, much more in 2018.
And it's only February.
Despite history's teachings, despite the horrors of the Holocaust, it seems we Jews still bear an unwanted, alien status.
As fascism once again rears its ugly head in Europe and the US, our status as "real" citizens of our respective countries is questioned.
For a faction of the population that's becoming more vocal and more violent, Jews are usurpers, interlopers, manipulators that cannot be trusted.
We are a pox, a plague, an infestation that must be eradicated.
It may be Purim, but some in our respective societies would rather celebrate a purge.
It's a dark, running joke within the Jewish community that many of our holidays are the same - They tried to kill us. We won. Let's celebrate.
That's the story of Purim, of Passover, and even of Hanukkah, to an extent.
We remember it with Yom Hashoah and Holocaust Remembrance Day.
But here we are, in 2018, once again facing a rise in antisemitism, fascism, and Far-Right Nationalism.
No, I don't feel like celebrating.
I feel like screaming, and not to blot out Haman's name.
Sure, we defeated Haman once. But what about the modern-day Hamans?
How long are we Jews going to have to keep screaming to blot out the Hamans for good?
It is said that those who refuse to learn from history are destined to repeat it.
And I am sad to see the beginnings of history repeating itself before my very eyes.
Where is our modern Mordecai?
Will another Esther rise from our ranks?
Need we Moses and another 10 plagues?
What more must we do to make this stop?
Tonight, if my resolve holds, I will go to an "American Ninja Warrior"-themed Megillah reading and celebration.
At first it just sounded like fun...but American Ninja Warrior Jews may be exactly what we need to face down this most recent rise in hatred, and I don't know if there are any Mordecais or Esthers to lead us out of this newest, yet millennias-old threat.
Maybe we need some ninja warrior tactics, as #NeverAgain is looking less and less likely.
Many await the Messiah.
But I subscribe to a saying by some Jewish sage whose teachings were in the footnotes of my sedur. The wisdom goes something like this: Live each day as if there was no God, and that every kindness and human advancement was dependent upon you alone.
I hope to do my part to make the world a better place.
But just in case, a little ninja warrior training can't hurt.
People grow and change. People drift apart.
Still, it's hard on the heart to wake one day and realize a once-prized relationship is over.
My mother once told me, "If you have even five good friends, you're lucky." I thought she was crazy. I was in school at the time, and I had scores of friends.
But now, as an adult, I see what she meant.
Friends are more than people you hang out with to have a good time. They're more than a group of folks with the same interests as you.
A true friend is there in the bad times as well as the good. They're ESPECIALLY there in the bad times.
REAL friends help you move! ;)
By this definition, I - and I bet many of you - have very few friends. Which makes it all the more important that we remember to cherish that blessed handful of people who'll be there when times get tough.
To those people in my life - I'm so grateful to have you. How wonderful you are! How special!
Every day in every way, I am indebted to you.
He then reminded everyone to say a prayer.
He leads the prayer each time.
It's a beautiful prayer he learned at his "school," and I love it because the prayer is kind, thoughtful, and respectful of all faiths. (If I can snag the words from Eli's folks, I'll post the prayer in the comments).
It may be yammering, but I'm just so proud of my nephew's kindheartedness. It reminds me of my brother, Justin, when he was a child - always thinking about everyone else...
It's hard to stay tenderhearted.
Life kicks everyone, but sometimes I think the tenderhearted get hit hardest...or maybe they just feel the blows more acutely.
So I want to take a moment to recognize the tenderhearted - to give thanks for them and hope my friends and family can raise more like them.
Yesterday I saw "The Post," and, while not a perfect film, it touched on the invaluable role a free press plays in our democracy.
One of the few lectures I remember clearly from my days at UGA was about how the Press was such an essential force as to warrant placement in The First Amendment, and what an honor and a responsibility that was. Each day, as I watch my Reuters, or listen to my BBC and NPR, I feel a deep longing. Long ago I learned what it's like to miss a PERSON. But it continues to surprise me how much I miss a PROFESSION.
I learned so much as a journalist. Every day I saw my job (at the macro level anyway) as interviewing experts in their fields, to learn more about those fields, and report the information back to the masses. I was a sharer. I was an educator. And all the while I was being educated daily on things I hadn't previously known.
Those were the most fulfilling days of my life.
I'm not sure what I am trying to say... and I see the irony in writing about being a communications professional who does not know how to effectively communicate what she's thinking...
I guess I said what I meant to say in my first sentence here.
If God or the Fates or a medical breakthrough or sheer, dumb luck decides to heal me one day, it is my fervent hope I can return to the job I loved - the job that gave me a continuing education, a sense of purpose, an outlet.
This is my love letter to Journalism, to education, to the pursuit of truth.
And I'm sharing it with you.
My word for 2018 is "gratitude."
I've been sick for 2.5 years now.
That means 2.5 years of praying, begging, crying, hoping, being disappointed, devastated, and scared shitless.
There's not a day that goes by that I don't fear for my future and lament the health choices of my past.
Not a day passes where I don't actively miss my old self, and mourn what has become of my body and spirit.
It's been a miserable, terrifying slog.
But through this slog, I've realized I have not done myself any favors.
I have not improved my quality of life one bit by incessantly obsessing about my symptoms or beating myself up for the mistakes that were made that lead to my disability.
Much research has been done on the power of positive thinking.
And, while I do not believe a positive mindset will heal me of the TBI and bodily dysfunction caused by medical malpractice, I do know that the daily worry, fear, and anger I experience compounds the stress on my already overtaxed body.
So what's to be done?
Best I can figure, gratitude should be my cornerstone to combating my negative mindset.
Instead of lamenting what I can no longer do, I'm actively attempting to remind myself to be grateful for what I CAN still do.
Last week I watched a news segment on a man with ALS and his wife.
Inarguably, this couple had been handed a shit sandwich.
ALS is a debilitating disease and this young couple had to continuously adapt as the man lost more and more of his abilities.
Today, he is wheelchair- and bed-bound, and relies on a computer to speak for him.
And he and his wife couldn't be happier.
They have very little money, as his care is incredibly expensive. She has to do everything for him...
And yet, they are all smiles.
They enjoy spending their days together.
They paint together (He puts paint on the wheels of his wheelchair and maneuvers over canvas. They then sell his paintings to raise money for his care.)
Despite their obstacles, they have nothing negative to say about their life.
They don't cry. They laugh.
The happy faces beaming forth from my television show no fear.
Rather than waste one moment on fear, they fight for a cure. They're sure they will find one.
And...I find myself actually being jealous of this couple.
While watching this news segment, I turned to Scott.
"I'm doing this wrong," I say with tears in my eyes.
"This man is worse off than me. This couple has more challenges. But they're managing so well. I....need to do better. I WILL do better."
And that was that.
I'd love to say I've done a complete 180 since that broadcast.
But I've never been a very keen liar.
So here's the truth: I still lament what I've lost 55 minutes out of every hour. But I am making a conscious effort for those other 5 minutes to be grateful for the gifts I still possess.
Is it making a difference?
I don't know.
But it can't hurt...
And right now I'll even settle for "it can't hurt" - that's more than any other treatment option has been able to offer.
It's my new thing.
Thanks for reading.
I'm grateful you did.
Many take comfort in this verse, but it always bothered me.
For if God's plan was to prosper and not to harm me, then why was I always being...well...HARMED? Was something getting in the way of God's plan? Was it me!?!? **Enter the pangs of (now Jewish) guilt.**
Or, if it wasn't MY fault, was it someone else's? Which one of you bastards screwed up the awesome plans God had for me? Or did God do it? Did He have good plans for me but just got busy and shit hit the fan while He was off baking God Pies or something?
So I pretty much avoided this verse whenever I skidded into times of trouble. At best it brought guilt. At worst it brought anger and resentment.
But here's the thing - in the original Hebrew, the word translated now as "plans" is NOT "plans."
The word in Hebrew is more directly/better translated as "thoughts."
Substitute "thoughts" where "plans" usually is and ruminate on that for a minute.
Have you done it yet?
Y'all - this difference opened up a WHOLE NEW WORLD for me.
Because in changing "plans" back to its original "thoughts," the verse takes on a new meaning.
The change means 1. God didn't have an awesome plan for me that I fucked up. I am off the hook!
2. You bastards didn't fuck it up either! You are off the hook.
3. God didn't screw up and forget about me while He was off making His #GodPies.
and 4. AND MOST IMPORTANTLY - It means that, when God thinks of me (hey y'all - GOD THINKS OF ME!), He thinks GOOD things!
That's right, despite the myriad of things I've done wrong - ALL OF WHICH HE KNOWS ABOUT - He still thinks well of me anyway. He still wants and hopes for good things for me regardless.
This is SO POWERFUL to me.
How many times, as flawed humans, do we secretly (or not so secretly) hope that those people who have wronged us would get hit by a train? Serves 'em right, I say! And those that REALLY hurt us? A GREAT, BIG TRAIN that backs up at least once to hit 'em a second time!
But not God.
Despite me (and you bastards) doing at least one thing every day that's out of line and should piss Him off, God still thinks GOOD things about me. And you.
Yes you! Even if you're a lowlife bastard who everyone else thinks should be run over repeatedly by the great big train.
I hope that makes you feel good - genuinely LOVED - inside.
And I hope it makes each of us think a little higher of and be a little kinder to each other, too.
Because if God can love you, you jerk bastard, I should at least try. And I hope you'll do the same for me.
Please forgive the long absence; I've been busy.
As you already know, there's a lot wrong with me.
For the past 2.5 years I've struggled
Hard knowing your TBI was caused
Hard finding a doc to deal with it
And that's if they even believe me.
Please forgive the long absence; I've been busy
With test after test to prove confidently
what I already know: that incompetence broke me
then charged me a fee.
I pay every day.
I pay with my sleep - or the lack of it, really.
I pay with my eyes, that no longer see
I pay with my ears
that ring incessantly.
I pay in daily pain.
I pay with a body that doesn't digest
the very nutrients that could save or heal me.
I spend my days hooked up to the IV
Just to see if maybe -
just maybe -
this time it will help.
Please forgive the long absence; I've been busy
Seeking out specialists
bringing them evidence
being met with arrogance
because they don't know.
Despite implied eminence
the doctors' benevolence
wears thin when they realize
they really don't know
how to manage my circumstance
or give me a second chance
at the health I had prior
to their colleague's mistakes.
Mistakes that should never, ever have happened.
But then I guess Life says
them's just the breaks.
So please forgive the long absence; I've been busy
but please know that I
do still need you beside me
because each day is harder
when faced all alone.
I want - no I need - to have you here with me
so even if Fate's set in stone
that I am never to sleep, or see
or hear as I once did
life can still have splendid
And I want to share those moments