“If You’ve Never Been Sent To A Neurologist…I Guess You Don't Need One."
My years seeing almost-doctors on Indigent Care.
It took them thirteen years to decide I needed an EEG. Which means it took them thirteen years to decide that I needed a neurologist. It took a second TBI and then a third, plus a year of disabling seizures for them to admit that I needed a new neuropsychological exam—
Actually, no. It took me:
Telling any health care professional I spoke to that I’d been having seizures since my first TBI in 2001.
Sustaining a second TBI when I got punched in the face by an angry man in 2012…
which resulted in the Year of Chronic Seizures that reduced my life to silence and solitude.
Losing my ability to drive, work, or even function outside my home (sometimes not even inside it) for half a year.
Losing my shot at getting my fiction published after I acquired a literary agent and started working with a Big Five editor because, instead of turning in my revision, I was too busy having seizures.
Getting rear-ended again in 2014 by a dude not paying attention at a stop sign.
Being pooh-poohed by my first neurologist, who refused to test me and instead treated me like I was whackadoo.
Having my cervical vertebrae start to fuse together.
Switching out rack-n-crack chiropractic to the type of spinal care that started to actually heal my neck and broke through the fusion, which “coincidentally” reduced my seizures to almost none. (Remember that. It’ll be super important later.)
Torquing off another guy in 2017 when I shot down his inappropriate come-on while pinned beneath him on the martial arts mat, which inspired him to tear apart my shoulder, neck, and reputation…
which thrust me back into seizures, migraines, and blackouts…
and screwed up my spine and hips all over again…
which put so much pressure on my knee that my meniscus tore.
His slander, compounded by the rapid deterioration of my health, mental faculties, and reliability also cost me a bunch of “friends”…
as well as the faith of my teachers at the dojo, who had just made me Student of the Month and hired me to begin Instructor Training.
In other words, that assault and smear campaign cost me my martial arts community and the chance at a secondary career.
(Have you forgotten the original point of this bullet list yet? Sheesh, I almost have. We were detailing what it took for me to finally get a new neuropsych exam. Oh, yeah, that’s right! Onward.)
It also took losing my dance career when I could no longer tolerate stage lights, flash photography, crowds, jet lag, long hours, choreography, memorizing dances, speaking to students while dancing…
not to mention all the tasks of running my own business—you know, little things like managing finances, timely correspondence, social media and other advertising, phone calls, and…ohhh…generally speaking coherently, concisely, consecutively, and communicatively…
without gobs of profanity…
ahem…
or melting down…
or zoning out…
or having to abruptly bail from a public location when people have paid me thousands of dollars…
or going radio silent for two weeks without warning.
It took me crashing and burning back into seizure-ville while trying to put together a business plan proposal amidst applying for Vocational Rehabilitation’s small business self-employment grant in 2019.
And learning that being an indie-published author wouldn’t be any more cooperative with my brain injuries than being an indie performing artist, especially since the writing world is waaaay bigger than the belly dance world.
And still telling every doctor I saw for nearly twenty years that I’d been having dizzy spells, migraines, seizures, blackouts, meltdowns, shutdowns, and tremors since shortly after my first TBI in that big car wreck—
Okay, you know what?
No.
I’m a big ole fibber.
All of that didn’t convince anybody that I needed a neurologist, a new neuropsych exam, or any sort of brain scans.
It convinced ONE Primary Care Physician—the one who saw me thirteen years after my first TBI—that it might be useful to hook my skull up to a bunch of ‘trodes, hit me with strobe lights, and see what my brain does.
But everybody else from 2000—2020?
My Years On Indigent Care
It would go like this.
Every six months I would be required to come into the clinic and meet my new Primary Care Physician. You see, low-income people in Colorado who couldn’t afford health insurance were put on Indigent Care. (Maybe they still are. I don’t know.) Although I was married, I was on this program because my husband kept refusing to add me to his insurance through work.
Didn’t matter that this was the precise reason he had insisted on getting married as early as we did—so he could get me proper health care.
Okay, no. Yet again, I’m a big ole fibber—
Actually, no. He was the big ole fibber.
The real reason he had said he wanted to put me on his health insurance was that he couldn’t stomach what it reflected on HIM to sit in that waiting room on the days I couldn’t drive myself. He would look around and recognize, to his utter mortification, too many faces in that waiting room.
The faces of people who had been put into the back of squad cars. The faces of people who had been to jail and prison. The faces of people who had been picked up and brought into hospitals or other official facilities for their…ahem…interesting behavior out on the sidewalk or under bridges.
My then-boyfriend would bring his star-studded girlie-friend into the clinic to meet her new PCP. For the entirety of his time in that waiting room, he would roil, grumble, and gnash his teeth at the prospect of dating somebody in that demographic.
So he said we needed to move up the date of our impending marriage to NOW.
So we did.
Yet in all our years of marriage, he still kept on driving me to that clinic and he still kept seething in that waiting room and he still kept being mortified that HIIIIIIS WIFE was one of THEM.
Yes.
I am.
He also kept insisting that we “couldn’t afford” to add me to health insurance (while overspending our budget by hundreds of dollars every month on unnecessary stuff, sneaking money out of our savings until the account was empty, sneaking the credit card out of the freezer where he had frozen it to keep himself from using it, and trying to convince me that he deserved a new sports car…)
So I would walk into that waiting room and sit down with My Dastardly Kind for my latest meet & greet with my new doctor—
Oh.
Excuse me. Did I say doctor? Ugh. Silly wabbit.
I meant resident-on-the-verge-of-becoming-a-doctor.
You see, people on the Indigent Care Program didn’t get to be treated by actual doctors. Every six months, we were subjected to a brandy-spanky new resident who asked us the same questions that we had been asked half a year ago by our most recent Almost-Doc.
My answer would not really change.
“Ohhhh, you know…I don’t smoke, barely drink, don’t do drugs. No, I couldn’t possibly be pregnant because *I haven’t had sex in six months/four months/I got fixed the millisecond they’d finally let me.* The date of my last menstruation was *BLAH.* I’m allergic to *YADA, YADA and YADA.* I’m on *SUCH AND SUCH MEDICATIONS.* I have allergies, a heart murmur, Traumatic Brain Injury from a car wreck in 2000, which gave me asthma, migraines, seizures, and a really strange, completely symmetrical rash on my arms that nobody has ever been able to diagnose, much less—”
“Wait a second!” my resident would butt in. “Go back.”
I would lie in wait for this. Oh, yes…
It would hit some of them more quickly than it hit others. “You…you have seizures?”
“Yep,” I would chirp, as though they’d just said, “You enjoy cinnamon and brown sugar in your oatmeal?”
They would rapidly tear through my file. You can guess what they were looking for, can’t you?
“You…” The brow would furrow. The face would screw up. They would hit me with the baffled look. “What kind of medication do you take for that?”
My brows would lift. My baffled look would be quite different from theirs, but it would be bafflement, nevertheless. “None.”
Oh, the shock! The horror! Some of them would bow up like a huffy gorilla. “And what does your neurologist say about that?”
This is where I would start laughing.
My response would vary, depending on:
my mood.
the severity of my brain symptoms that day, which always impacts my inability to keep the uncensored truth of my thoughts behind my teeth.
how many times I’d had to come in and have this conversation that year.
and especially how many times I’d had that conversation with medical professionals throughout the course of the past decade.
By the time we got to about 2012, especially after I’d had a second TBI and still nobody would retest me, I tended to get a bit snarky about it, saying things like, “A—w-wait…sorry. A what now?”
Or I would grin with all my fangs bared while intoning, completely deadpan, “A n-neu-neurologist? What’s that?”
Sometimes I would buff nonexistent burrs from my fingernails while musing, “You know…I’ve heard of those. It’s always sounded like something I could use, but…what do I know? I’m just the person who’s had seizures for *YADA* years.”
In the end, I would wind up staring this fresh-faced almost-a-doctor straight in the eye, now with a completely earnest-and-peeved (and rather desperate-for-help) look as I informed them, “Nobody’s ever sent me to a neurologist.”
Over and over—and yes, over again—the reply would come back the same: “Huh. Well…” Sometimes there would be a little more glancing into my file; sometimes not. “I guess since nobody has ever sent you to a neurologist, you don’t need one.”
So many of these residents said those precise words to me that I began to wonder if this was something they taught in medical school.
None of them could ever explain to me why, if I was having seizures, I didn’t need to see a neurologist. But they all insisted that I didn’t.
This didn’t change until 2013.
I Finally Get Referred to a Neurologist
I was pretty snarky that day. My seizures had increased to multiple times a week. They weren’t at their ultimate height yet, but they were headed that direction. I’d had one onstage a few months earlier, and had done some…ahem…interesting things when my overloaded brains short-circuited.
Dangerous things in my socks and no jacket or phone while stumbling down Powers Boulevard to black out behind a storage unit facility because I couldn’t stay awake any longer. Couldn’t remember how to get home either—not until I rebooted the hard drive.
Upon meeting my newest PCP, I didn’t expect anything different from the same-ole-same-ole.
So when this young, vibrant resident bolted forward to fire off shock, bafflement, and affront—not at me—but at the fact that nobody had ever sent me to a neurologist in thirteen years of telling health care professionals that I’d had alarming neurological symptoms since 2001...
Well, it was my turn for some shock.
I bawled in relief at his reaction. I bawled when he immediately ordered an EEG for me. I sniffled and beamed and bawled a little more when he made me promise that the first thing I’d do upon landing in Arkansas was to find a neurologist. He said that anybody who needed a referral could call him. I clutched his card to my heart and sniffled some more.
See, I was only two months away from moving out-of-state because I was becoming unfunctional from nine months of ever-increasing brain problems, and my parents couldn’t help me from halfway across the country.
When I shook hands with this miraculous Almost-Doc at the end of my appointment, I covered his knuckles with my other hand and thanked him through my continued bawling and heart-crushing relief.
UP NEXT:
AFTER 14 YEARS, I FINALLY GET AN EEG AND SEE A NEUROLOGIST.
© 2024 Hartebeast
The lengths of headfuckery (no pun intended) to your story is really quite astounding. It’s so frustrating to read — I cannot even imagine having to live it!
It amazes me how much power doctors and other such medical people wield in the way of impacting our lives positively or negatively. Makes me feel like there should be more oversight or regulations or SOMETHING to ensure that what happened to you doesn’t happen.
Ah, the equivalent of, "But you don't look/sound autistic!"