In the Wake of Western Medicine's Miracles and Disasters
Collage by J.A. Carter-Winward
R-E-S-P-E-C-T, find out what it means to me…
One of my dad's favorite words to wield at us was "respect." He demanded our respect because he put a roof over our heads. My mom used to counter with "You can't force people to respect you."
She was right, but also, Dad was right, too in a way. He just didn't use the proper form of the word.
Respect isn't demanded, it's earned. But as an adverb, one can speak or behave respectfully, and that's what Dad wanted. He didn't want us smarting off, speaking to him with disrespect. He did deserve that.
But as a noun, respect isn't something you can feel for someone you don't respect. It's like forcing someone to love. Not possible. They can pretend they love you. But they don't feel it.
Sometimes people believe having power, money, status, that earns you respect, but more often than not, people don't respect you, they respect your money, power, status, or the ability to gain those things. Being liked doesn't mean you are respected, either.
Finally, fear is not respect. But in certain circumstances, fear is a manifestation of respect when it comes to things that are out of our control.
I wouldn't like, love, or envy a class-5 hurricane, but I'd respect it and get the hell outta the way if it was heading toward me. Which brings me to hubris.
The history of the word "hubris" is long and weird, but when you ask most people what it means, they'll tell you it's thinking you're able to do things no one can or should do. In other words, it isn't just overestimating one's abilities, it's overestimating the human ability to do things human beings were not meant to do. Yes, "playing god" comes to mind.
So, to stand in the path of a class-5 hurricane, believing you can walk into the eye peacefully isn't just hubristic, it's stupid.
And while history has proved to us that human beings can do the once-thought "impossible," understand, that isn't because we can do anything, it's that we assumed for too long we knew the limitations of god's (whatever you conceive that to be) power (omnipotence aside) and we measured our own potential through those assumptions.
So, for the purposes of this post today, I'm going to contrast "respect" with "hubris" and how respecting something that clearly has you by the shorthairs is smart, and why feeling like you have power over something that could have you by the shorthairs (but doesn't yet) is dangerous.
THE ICARUS EFFECT
No, not the dystopian fiction novel of the same name (haven't read it, no idea), the mythological character, Icarus, whose father, Daedalus, fashioned wings from feathers and wax to escape imprisonment. As Icarus and his father "flew" through the sky to their freedom, Icarus was overcome with the ecstasy of flight and forgot his father's wisdom and warning: don't fly too close to the sun.
Now, this is a story of innocent hubris. The punishment for Icarus? He fell to the sea and to his death when the sun's heat melted all the wax.
In a more Judeo-Christian bent, according to Genesis, the Babylonians wanted to build a great city and build a tower so grand, the top would penetrate the realm of God, Heaven. According to the story, God was so upset by this form of defiant hubris, he confounded the day laborer's speech so they couldn't communicate.
I mean, think about it. One minute you're speaking Babylonian, and you say, "Hey, grab me a two-buh-four," but suddenly the other guy speaks Swahili. No wonder that city wasn't built.
Oh, and the lesson was that only God gets to live in Heaven, and you shouldn't try and do stuff only eternal, omniscient beings can do.
So no death, but they were confounded, confused, befuddled, dumbfounded, and all the other synonyms of "HUH?!" you can think of.
Innocent hubris isn't due to a lack of respect, but more of a senseless loss of reason in the wake of success. This type of hubris is the foundational element of every hero's journey, from ancient myth to present-day superhero movies.
It's the failure that reminds us of our limits.
Going back to Icarus and Daedalus, understand—it wasn't hubristic to fly too close to the sun. It was hubristic to presume man could fly.
Daedalus knew this. Icarus was caught up in the thrill of the successful flight. He wasn't careful, and some versions suggest that the sun god, Apollo, lured Icarus ever higher, so his fall would be spectacular and serve as a warning to others.
PLAYING GOD
Iron Monger followed in Iron Man's flight steps, as it were, and flew too high. In the Marvel® movie, Jeff Bridges' character Obadiah Stane famously tells Tony Stark (Ironman®, sorry, should have done a spoiler alert, my bad) that he's "never felt better!" And as he flew higher and higher, Tony asks him if he'd worked out "the icing problem."
Image courtesy of Fandom
"Icing problem? What icing probl-ahhhh!"
So based on his own fall, Tony Stark's innocent hubris, he learned to respect the laws of nature and gravity, and then, of course, solved them, which is why it's not real.
But Iron Monger (Bridges) had defiant hubris and defiant hubris is another beast.
Defiant hubris is done with the determination of will, ignoring the possibility of failure and going so far as to place other people in harm's way to avoid failure or the appearance of failure. It's forging ahead, despite the risks or danger.
Nearly every day, I encounter defiant hubris in the work of raising awareness for dangerous side effects.
"I quit Zoloft with no problem at all. What joggle? My leg doesn't joggle."
"My depression started in the WOMB. My meth-addicted mother told me so."
"These medications are perfectly safe to take for life. It's stressful to have major depressive disorder for life, which is why I prescribe Valium to all my depressed patients."
My response?
"Hey, talk to the FDA. I didn't say they were dangerous. The FDA did, oh, and the drug makers did. Kthanksbye."
I made fun of my doctor for having a DSM-5 on his shelf. He laughed and said, "Yeah, well. It's only a tool."
I told him he was a tool. Then he said, "What I mean is, it has some diagnostic value."
I said, "Oh, you mean for insurance codes?"
Him:
And yes, we have that kind of relationship, based on respect for each other's personhood. But.
I'll never forget the look on his face when I asked him if he'd ever prescribe atypical antipsychotics or benzodiazepines to one of his kids.
He didn't answer me, by the way. The cognitive dissonance was too much for him to answer me.
IT'S (NOT) A MIRACLE! HALLELUJAH…
The problem we face as a healthcare reform organization is that too many medical professionals' livelihoods depend on them believing that drug makers have found long-term, viable treatment options for severe, clinical depression, anxiety disorders, bipolar disorder, schizophrenia, etc.
Back in the early late 19th and early 20th centuries, the medical community found a modicum of success through various calming agents, like barbiturates, in creating a docile population in "insane asylums" and "mental institutions."
Much like today, if you had money, you were given a longer leash to express your "crazy." But when you didn't, and other people had the power, or you became a nuisance, you could be committed for life and chemically lobotomized, or actually lobotomized, a practice that shockingly continued into the late, late 20th century, believe it or not.
It's been in the last few decades that the innocent hubris of medicine turned defiant, it did so with a vengeance.
Maybe it was the sunk-cost fallacy, but whatever the case, drugs made for one thing started to get used for other things based on their side effects. Like…
"Welp, this drug doesn't help with COPD, but it sure calms these folks down, so hey, how about a 'repurpose?'"
"Willful ignorance" is what you have if you're unwilling to examine evidence that contradicts what you think you know. That's one thing if it's just me, a writer. It's another when you have the "respect" afforded you by medical training that's been ingrained in our cultural ethos.
"With great power comes great responsibility" said Uncle Ben to Peter Parker, and how many times did the friendly neighborhood Icarus get smacked outta the sky?
I recently posted about akathisia and how it had come back. Thankfully, it was temporary, but while in the throes of it? It was like the beginning, only worse—because I knew what "worse" felt like.
I've had a handle on akathisia for some time now, but I haven't written about it for the very reasons I stated, above. I can't explain, in detail, everything we've done and tried to get me here, and if I tried, I'd miss something.
It would be outrageously irresponsible to tell people I found my way out of akathisia, even though my track record is better than most. I've also had it for longer than most, so that's a whole different beast.
In other words, I lost respect for the class-5 hurricane that is the damage of akathisia and other neurological movement disorders brought on by long-term medication mismanagement.
I started to let my brain injury protocols slip. I started going out more, allowing more stress in and on my CNS, I allowed myself to stay up too late, I didn't rest, I dove back into attempts at socializing, and I let my strict dietary protocols slip, using this childish victim-bullshit, like, "Haven't I given up enough already? Haven't I done everything to heal, and now that I feel better, why can't I just be like other people once in a while…"
All that to justify a stupid sugar cookie from the local bakery. And no, a sugar cookie isn't what slipped my brain and body back into akathisia. Because the most important word in that whole paragraph? Can you guess what it is?
VICTIM. Or rather, victim-bullshit.
"The world owes me because the world hurt me. It isn't fair. I deserve…"
I "deserve" exactly whatever lands on my plate. We all do. That's not to suggest I deserved brain damage from medications or from an assault. But when you are victimized, you have a choice, at some point, about staying there and that point is different for everyone.
I had a young woman contact me and beg me for help. She'd had unrelenting akathisia for a couple of months. Someone else I knew vouched for her, so I engaged.
Thirty infuriating minutes later, I cut her off. She didn't want to hear that the drugs she was taking were likely causing akathisia. She wanted to know what other pills could make it subside. She didn't want to hear that if a poison is blinding you, you stop drinking the poison. She wanted a magic potion to help her see better. She didn't want to hear that she might have to withdraw off medications, (possibly, with her doctor's guidance etc.) to find her way out. That she'd have to take control of her own health, get the #*$% off of social media, for starters, learn about the brain, and maybe go to a brain injury specialist, etc. No, no.
She wanted my secret. She wanted to know how I've been able to do "all I've done in my life" while suffering, to varying degrees, with akathisia. I told her I had no other choice. Because no one told me, back in 1997 and then in 2004, about Black Box Warnings, and that bipolar II was 'a psychiatric fad that overshot the mark and led to unnecessary medication for many patients on flimsy grounds.'
(Again, don't argue with me. Argue with guy who chaired the creation of the DSM-IV and the "creation" of bipolar II, Dr. Allen Frances. I'm not doing this for you. Read the info or not.)
I don't have a formula, a secret. I have had a long, arduous, painful, humbling journey and it continues, and about a month ago, see, I forgot all the work I did and began thinking in ways that, in turn, generated a sense of entitlement, which is the earmark of victimhood.
"Someone owes me something."
Life doesn't owe me anything, and in fact, I owe Life everything.
In short, I was so giddy at the seemingly permanent state of "no akathisia," I started climbing, higher and higher, pushing myself to make up for lost time, "blurry legging" it, all the while, the small whisper—Careful—went unheeded.
Had I defiantly continued on the path of believing akathisia was 100% out of my control, it would have been.
THAT IS NOT TO SUGGEST THOSE WITH ACUTE AKATHISIA HAVE ANY CONTROL OVER IT.
But *I* have a modicum of control over how bad it gets, and whether it takes the reins of my day or not and that control didn't come easy or fast. I've been working a solid 25 years to get here.
Because when I had Zoloft-induced akathisia, I started therapy. I got my body healthy. I began taking care of myself, not knowing I was really taking care of head trauma from an assault. I was told it was "bipolar II disorder" and I believed it. The best thing that could have happened to me? I lost my job and all access to medical insurance.
I went cold-turkey off an entire cocktail of psych meds when, after sustaining the head injury and developing Wernicke's aphasia (receptive aphasia) right after, thus flunking out of college, I was seen at the local Valley Mental Health clinic, sliding scale, by the fantabulous Utah Brain Doctor, Dr. Kay Philippi, the original misdiagnosing physician, and yeah, going cold turkey from her cocktail of neuroleptics and SSRIs almost killed me.
When I married my second husband, ironically for insurance purposes, since we wanted to wait, I still held out. I wanted to "treat" my symptoms naturally. Had I not been misdiagnosed (again) by an arrogant, hubristic "rock star" doctor named Dr. Noel. Gardner, I would have likely recovered and been accurately diagnosed with the seizure disorder and brain injury, rather than his definition of what I had, ready for this one?
"A bipolar freak-out." – Dr. Noel C. Gardner, bipolar II freak-out expert.
DEFIANT HUBRIS DISASTERS
*Slow clap*
Yes, Noel, that "expert status?" Well deserved. "Bi-polar freak out."
Yes, he's got a Wikipedia page because he was the key witness in a competency hearing for a famous child rapist in Utah, the man who kidnapped Elizabeth Smart.
When I went into Noel's office, he was so kind. He listened with such empathy. Finally, someone who understood the pain I'd been in. He told me I'd suffered enough, and if I didn't medicate the "bipolar disorder," it would get progressively worse. In other words, I had no choice. I'd terrified my small children with my seizure, sorry, "bipolar freak out," so I HAD to stop being so stubborn and listen to the good doctor.
Then, he pitched me on a brand-new treatment for bipolar disorder, a new drug called Abilify, a next-generation miracle! And an anti-psychotic. He'd just come in from out of town and had given an important speech somewhere about this drug and its efficacy in treating bipolar disorder, so he knew.
When I called him the first morning after 10 mg. of Abilify unable to hold still, I remember telling him I felt like I was literally going out of my mind. Like "my bones are trying to escape my body," and "peeling off my own skin" and YEAH, I remember my words vividly.
Instead of telling me I had drug-induced akathisia (because this feeling was nowhere NEAR pleasant) he told me I was in a mania, and he lowered the dose of the drug to 5 mg. Then to 2.5. That sweet spot of just enough akathisia to wake me up, get me moving, along with all the other drugs to combat the other shit that was happening. The brain damage that was occurring.
Now, I saw the good doctor Gardener in 2004. Using the clever search engine on our Home Page of the Black Box Warning Initiative, which takes me to ProPublica's Dollars for Doctors, I searched Noel's payments going back to 2009. Well, we'll let 2010 speak for itself, shall we?
Images courtesy of ProPublica's Dollars for Doctors
Yeah, I know. I got tired of all the numbers, so I just took a short cut and added up all the payments he's taken from pharmaceutical companies—Oh, please keep in mind? This is public record. Also, this is only the amounts the Federal government knows about, so this might be the tip of the ol' iceberg here—from 2013 to 2018.
$1,192,129.00
This is money Dr. Gardener made from drug companies, kids. Not from being a doctor.
I added some of 2010 and 2011 in there as well, but…you get the idea. I remember how we had to pay $900 a bottle for Latuda before our premium was met. I can't really make a good estimate of what it's cost me, personally, to have to withdraw off the medications Noel started me on. After my "bipolar freak-out."
You know, where you have an aura, then space out, and headache lasting hours, post-ictal aphasia, confusion….right? Classic bipolar II, amIright?
But my therapist, a brain injury specialist who was that uninformed, and Dr. Noel, well, they got me allll sorted out.
People have asked me why I don't sue. Sue who, exactly? The original doc who gave me the diagnosis back in 1997? The guy who banged up my head in the first place? The family practitioner who was so effing ignorant, she put me on Pristiq, an SNRI, in addition to the 2 SSRI's I was on, because she doesn't know those drugs work at cross-purposes? Why would I sue her for her innocent hubris. Or rather, her ignorant hubris.
But I gotta say. I look at that huge amount of money, and I feel rage. I mean, just ONE year's take of Noel's shill money would pay for my neuro-therapy, my dietary needs, the medications I take to mitigate the suffering and slow the damage, damage that actually IS progressive now, to my brain. Damage the drugs he prescribed did and continue to do even though I'm off them. Even one year of the lowest shill payment could fund the Black Box Warning Initiative's cost, which we bear alone.
Although he's started his very own non-profit to help those in need of mental health treatment, and hm, maybe assuage some guilt? No, no, it's to make more money, or he'd be helping people like me, he's still one of the main reasons I need medication to survive, walk, talk, function. Him.
Why not sue? Well. Dr. Gardner left himself so many outs, there's no way to prove which drug did what and when. Like trapping a tomato seed under your finger. That's how good he is. He is a decent man who likely can't see for all the wealth he's accumulated at the cost of so many lives.
His entire LIFE has been built on poisoning people. Tell me, was it worth it, Noel? It wasn't to me.
Image courtesy of IMPACT (nice!) Mental Health
No, I don't want to sue him or any of them. But I look at his face and I feel like curling into a ball and sobbing. Why wasn't he right? Why can't I be wrong, about all of it? Look at his face, I wanna just feel his reassurances again and believe.
WAS I WORTH IT?
Yes, I want to feel safe again and believe.
But I'm not a goddamned child. What he owes me? Nothing. But I owe it to him, others, to share what happened. What he did. Willfully, defiantly, hubristically, and maybe innocently in the beginning, but now? Noel? You've got zero excuses.
No, I'm not out for revenge because bottom line, whatever's on my plate is what I dish up in the moment, now. I can't un-do the past.
Ruining someone's life by putting them through the legal wringer is chopping off my own nose to spite my face because me, my family, would be put through the legal wringer, too, and at the end of the day, what I want is to feel better and be okay again.
But that isn't going to happen if I'm mired in revenge. I have limited time, choices, energy. How I choose to use those is how I have any control over my quality of life, now.
So. I write. I share, I fight, I rest, and I remember, always, to remain humble in the face of the things I do not know or understand.
I'm just going by what the drug-makers told me. "By taking these drugs, you might sustain permanent brain damage."
Gosh, Dr. Gardner, that would have been neat information in 2004.
Here's the info on Abilify.
I got this from the FDA's website, btw.
I'm not an MD and I have this information. The FDA has this information. The DRUG MAKERS have this information. Why don't YOU have this information, Dr. Gardner? You do. You did. You had it and have it and you didn't tell me.
This info could have saved my life. Lack of this info will take other lives. Live with that. Sit with that and tell me:
Were we, your patients, worth it?
So if you want to call me anything at all — I think you could say I am your reckoning.
Coming soon: the song Worth It, written, performed by me. Because it’s my job to create meaning from the gift that is Life, even throughout the struggle of living with the consequences of the bad or ignorant actions of others.
Create meaning out of the pain. The senseless, greed-driven, hubristic, defiant, totally preventable pain.