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Cavernous Malformations, Temporal Lobe Epilepsy – and One Adventurer’s Unexpected Journey Down the Rabbit Hole, Lewis Carroll and Keanu Reeves Aside

August 24, 2016

J. Goodman - contact information available upon request

 

There are plenty of clichés that gain potency because – to some extent - they’re true:

 

“That which doesn’t kill you makes you stronger”

“All that Glitters is Not Gold”, and

 “You Don’t Know Whether to Laugh or Cry.”

 

There are tons of times in Life when that applies.

Including a series of peculiar events that I experienced just one year ago; ones that “rocked my world” (in Breaking Bad ways) to its core.

My reason for writing this? To an extent, it’s cathartic… But School House Rock educational, as well.  When the last word is written – followed by “Fade Out” or “The End” – this is just one person’s small story about the reroutes Life sometimes throws your way.

And battling a not-so-quaint medical condition that isn’t as well known as it should be.

As you read, promise me a few things.  First: gush about what a great writer I am.  In that regard, I’m easy to please. 

Beyond that – please realize that the takeaway for these ramblings isn’t an issue of “poor me.”  Rather, this essay’s meant as a Word of Warning to those who experience similar things.  You’re not alone.  There are legions of others that have tread down the same path – no matter how muddy and sticky it might be.

And remember - there’s always hope. When it comes down to brass tacks (and titanium medical bolts), that’s what’s so nifty about being alive.  Sure, you sometimes get raked over the coals.  But once you stop to take a breath, the glory of new opportunities rears its seductive head.

So read on, MacDuff. Bear with me:

First – a touch of personal history.  What makes me groove… and tick.

Raised extremely middle class, I’ve always had a huge work ethic.  I actually enjoy working at breakneck speed.  Throughout my career, I’ve given every task 200%.  Both in order to earn one’s paycheck, and just because… it’s the right thing to do.

You want me to work 15 hours straight - and eat ramen noodles at my desk?  Sure thing, Sir. No problem.  Just one question: Shrimp or Chicken? And do you want hot sauce with that?

And I excelled in school.  Taking special honors classes, I graduated high school in three years.  Followed by a BA and a Masters with a 4.0 average… more or less.

Then there’s the flip side of the coin.  At the age of eleven, I moved from the mid-west to a gritty area of upstate NY. From the day I got kicked out of the womb, I was always a tomboy - and even more so when I reached my teens.  I was Army ROTC in college. I’ve thrown grenades. And qualified with an M-16. I’ve earned a brown tip in Fuji Ryu Jujitsu: a variation of the Japanese martial art adapted to Bronx Street Fighting (where I’ve lived for the past 18 years.)  It’s a brutal style, more vicious than Gracie. And glorious in its way.  I bring items like that up to highlight I’ve always been a fighter (when I’m not being over-the-top silly, that is).  And that plays into this story…

The year: 2015.  The place: The Finance industry.  As someone who’s experienced both situations at their worst, Finance can be as tough as any dojo. You have to learn to run at maximum speed –with precision, multi-tasking, and grace.  And you become better at swearing than a soldier.  In ways that would make a Bronx-ite blush.

When this particular situation “went down”, I’d already done “my time” in Finance. Not because I enjoyed it (I didn’t. I hated every irreplaceable minute of life I lost while computing endless yields.)  But the customers I met made up for that. Many of them were - and are - wonderful. I’ll always be glad that they crossed my path.

But was that why I stayed?  HELL no. My reason was far more pragmatic; economic survival in its rawest form.  In 2015, the crash of 2008 was still ringing in many ears  - there was just no way to get a different job.  At 40+, I was screwed. Mortgage and grocery bills had to be paid. And especially when factoring in the need for medical insurance, utility bills and more.  Even with no discretionary spending, there were no alternatives at that time.

Still, things had been… stressful at work (company of course not to be named).  A particularly bad apple had been hired at my company; one that had loads of power – and no pesky scruples that got in their way.  We’re talking about a true business sociopath: someone who made Christian Bale’s American Psycho look tame. Completely incompetent, he was a textbook misogynist… and completely in control. I’d made the mistake of calling him out once when he bullied me.  And things went downhill from there.

As things got stressful, they also got strange. Though I soldiered on full tilt, I started to experience some bizarre episodes; encountered while I typed away at my desk. 

Here’s how the Alice in Wonderland experience went:

-        A sudden, recurrent thought: why are you wasting your life?

-        Followed by a rising feeling in my gut; a fleeting moment of panic – akin to reaching the crest of a roller coaster, then dropping straight down.

-        A burning rubber smell, accompanied by a sense of déjà vue.  Specifically, “WTF is that odor?  Why can’t I pinpoint it?  I’ve definitely smelled it somewhere before...” In retrospect, I could have blamed it on a co-worker’s lunch. Or maybe someone’s perfume?  Who really knows?

-        And then – the coup de grace… I’d blink: and 3 hours disappeared.  Those days – before I was granted my own office - I was a cubicle slave.  But no one noticed. Which means, apparently I didn’t act strange. Still, a chunk of my life was suddenly - shockingly - gone.

That particular slice of fun happened about 15 times.  What did I do after each incident?  I took a deep breath, and forged along with work - like a good corporate soldier. Being a tough cookie, I’d never experienced a panic attack in all my life… so I just assumed that’s what it was. Suck it up and keep going: that was my mantra.  And I didn’t consult a doctor. Clearly, the new co-worker was just getting under my skin. To the point I was “cracking up.”

Then other symptoms joined in.  One fainting spell during after-hours corporate drinks. And it was getting harder to focus at work; I had to read emails more than once. And the memory lapses seemed to get progressively worse.  My immediate supervisor blamed it on my Diet Pepsi habit – claiming the Aspartame rotted my brain. Comments like that were pretty regular: and he blamed the fainting spell on booze. For the next several years – despite having seen me drink successfully at subsequent events - he made constant jokes about me not being able to “hold my liquor”. In front of co-workers, no less.

Then multi-tasking began to get difficult.  Still, I soldiered on.

After about a year, the smells and blacks-outs stopped. Replaced by visual hallucinations instead.  Picture this, Kiddies: who out there played with Kaleidoscopes as a child?   Imagine a circle of colors and wavy patterns appearing in one’s eye; a small dot. Quick as you can say “oh sh*t, not again”,  that speck starts to grow.  Soon, you can’t see or read anything.  But who cares? Ain’t no thing. That sucker’s gone in thirty minutes, tops. And if you’re too young to have played with Kaleidoscopes, replace that image as the Macbook pinwheel of Death… spinning happily in one’s eye.

Yeah, I Googled that one.  WebMD informed me that flashing lights can be stress migraines. So I let it slide as well.

All of which changed when that co-worker got me terminated.  After all, he had all the ammo he needed.  Among other things, he pointed to my memory issues as “proof” – clearly, I was a slacker. One that should be shown the door.

Not that there wasn’t one little silver lining.  My supervisor (he of the alcohol jokes) gave me a few months to find another job. And so the scrambling began.  Sending out resumes in every direction.  Going to doctors to catch up on physicals. After all, the doomsday clock was ticking on my medical insurance. I was facing the prospect of having absolutely none at all.

So, off to the PCP I went.  I thought I had an ear infection; it’d been hanging around like a stale booger for three months. The symptoms I felt were vague: a mild headache, the sensation of both ears being blocked. And a touch of vertigo… enough that I was afraid to walk my dog, terrified I’d drop his leash. And – I was experiencing strange impulses of anger. (Which I didn’t act on, of course.)  But given what was happening at work, who could blame me?  It made sense…

And so the “Comedy of Errors” began.  I booked time with an ENT, who gave me a clean bill of health.  He suspected I might have migraines.  Which I thought was insane.  Based on TV Commercials, everyone knows what real Migraines are like: pounding headaches that make you wish you were dead.  No, he argued – they’re not always that.  Flashing lights (aka “auras”) happen.  And so I agreed to an MRI.  Not because I thought he was right.  But because I soon wouldn’t have medical insurance if I ever changed my mind.

MRIs are interesting: they inject you with contrast (sometimes), and lay you down on a slab.  Assistants slide you into a tube that resembles Ripley’s sleeping pod in Alien.  The machine rumbles for about 45 minutes. And woe is you if you do anything. Don’t scratch your nose. And God HELP you – and the poor technicians – if you have to fart. If you have to go the bathroom, hold it in.  You’re wedged in metal limbo -  the seventh level of Hell. Fortunately, they pipe in music through headphones.  For me, 80s music did the (Cheap) Trick.  And avoid being Claustrophobic. If you are, MRI’s are a major bitch.

Two days later, I found myself sitting in a hospital waiting room.  Ironically, not for myself.  Instead, I was waiting for dear hubby to come out of surgery. We were scrambling to get everything medical done for him as well.  And that included an umbilical hernia operation. And that’s when I got the call.

The hospital had found something on the MRI.  They’d already taken the liberty of booking a neurosurgeon appointment. Could I come in - right away.

And so I went. Only to learn:

About a medical condition that few people know exist. Kinda like Beelzebub (or Chtulu), it’s a thing that goes by many names.  Cavernous Malformation.  Angioma.  CCM. AVM.  But whatever you chose to call it: Tom, Dick, Harry, or Little Bob, here’s the gist:

Imagine – a bundle of capillaries that accidentally grow in your brain. Those suckers can burrow in anywhere; wherever their twisted little tastes prefer. Maybe that sad little CCM’s just lonely; it wants hang out somewhere with a “view.” 

Another funny thing (strange “funny”– not ha-ha): many people have Cavernous Malformations, yet never know. Cavs are often asymptotic. That’s if you’re lucky. Then there are people like me. 

Those little “brain berries” have thinner skin than Donald Trump. And sometimes (like Megan Kelly, Mr. Trump claims) they start to bleed.  And bleeding brains are bad juju.  They can cause damage, seizures… even death.  When imaged, they have a “popcorn” appearance due to dried blood from past bleeds. Which make them stand out like MC Hammer on an MRI.

Remember the Olympian Runner Flo Jo  - she of the fantastic nails?  Florence Griffith Joyner still holds the record as the fastest woman ever; a once-in-a-lifetime athlete blessed with grace and style.  Flo Jo passed away in 1998 from a seizure during her sleep. When that happened, rumors of doping flew (you know how people are.) But the tragic truth is this: Fl Jo had a cavernous malformation.  One night it bled – and she suffocated into her pillow.  A genuine loss for her family. And the world.

Some Cavs are genetic. People can be tested for the CCM2 gene.  Other Cavs are simply medical quirks of fate – ones with rather nasty traits. 

The discovery shed instant light on what I’d been experiencing. No, I wasn’t having panic attacks: rather, seizures due to bleeds.  My particular Cavernous Malformation sat fat and happy in my right temporal lobe… fortunately, in an easy to reach place.

Bear in mind – some people have it far worse.  Cavs can – and often do - happen to kids.  And they can lurk in horrible, lousy places, like the Boogeyman in a cave.  Cavs can grow in the brain stem, or on the spine.  In one’s cerebellum in some deep, dark place.  Resulting in a variety of symptoms: full out seizures where you fall and spasm, trouble walking, or seeing, and tons of hallucinations – the olfactory, visual or auditory kind. 

And to make it even more worse, many doctors – and neurologists – don’t understand what CCMs are. Diagnosis can be problematic.  (Which is kind of strange, if you ask me. Isn’t that a neurologists’ job?) Unless you get lucky, like I did.

I got fast-tracked to the OR.

As for the job?  Well, I was less lucky there.  Though I showed my boss the MRI, the company I’d served loyally for almost a decade still determined I “should go.”  Which left me in a major mess.  IE: negotiating that I be allowed to keep my medical benefits longer; both for the brain operation and for any needed follow-up. Suffice it to say, I was under duress.  With an active brain condition at the time.  So blackmailing me was easy.  Sure – they replied – we’ll let you keep medical insurance for the rest of the year.  But only if you sign a Settlement Agreement promising you’ll never sue.  That’s the choice I was given.  A) Forego life saving brain surgery. B) Or sign away my rights. So, I did.

Hey – could I (fully) blame them?  The budget and economy was still tight. Plus, they’d already replaced me with a younger, cheaper employee. Why waste money and keep me on board?

I was damaged goods.

After that, things sped by like a blur.  Hear the words “brain surgery”, and your life flashes before your aura filled eyes. For what it’s worth, I kept working until two days before the surgery.  After all, customers are always Number One priority.  I’ve never been the sort of person to leave anything undone – not if I had strength left to stand.

And I made sure that everything else was in place.  More fun “chores” on my list:

Writing a letter to my husband, telling him I loved him… just in case I never woke up. 

Making sure he knew all the passwords: Email. Facebook. The family bank account. 

There were times I locked myself in the bathroom at work, and cried until I was drained dry.  Staring down the barrel of one’s mortality can do that to a person, even one that did go through Army ROTC.  Because facing the prospect that one could wake up permanently handicapped or dead sucks.  (Though “waking up dead” would be impressive, don’t you think?) 

But in the end, the odds were good that wouldn’t happen.  And – for me – it beat the alternative.  IE: letting that sucker continue to bleed, causing more neurological damage each time.  And then if/when it burst: facing emergency surgery with the closest doctor available – whether or not they’d even seen a CCM before. We’re talking about a Cronenberg Scanners level event. And that – Dear Readers - ain’t never good.

Ultimately – I did what I had to do.  And passed the time with tons of jokes.  My favorite: the Kindergarten Cop quote by Arnold S.; “it’s not a tumah.” And I Googled the web for cool punk haircuts.  Just in case they shaved me bald.

The day of surgery, nurses wheeled me into an impressive operating room: populated by robot arms that looked like something out of 2001 – along with a 100” monitor screen. I even joked while they inserted the anesthesia needle.  It was cold, and the surgical team was “cool.” They asked me to count backwards, which I did -

Realizing it might be the last thing I ever see.

Blackout. Then I woke up.

It’d been four hours of surgery. A mere split second from my point of view.  (Those temporal jumps kept getting more and more trippy. Neat – in a psychedelic way.)  The anesthesia made me vomit, but Dear Hubby and one of my best friends were by my side. 

Never got a single headache. And the hospital food was surprisingly good.  Folks: quinoa salads can be your best friend, especially when there’s a four-inch hole in your head.  Turns out, they’d only shaved a strip of hair – thereby blowing my chance at rocking a Blondie/Cyndie Lauper look. Still, the incision had a cool Frankenstein vibe. (According to Dear Hubby, anyway. Given where it is, I never saw the thing myself.) 

Now, I have Titanium bolts in my skull.  I can’t wait until I pass through airport security someday. The surgeon swore it won’t set off alarms.  But part of me hopes it will.

They let me go in just 2.5 days.  Brain surgery ala Jiffy Lube.

They sent me home with layers of gauze wrapped around my head. I blended in well to my Bronx neighborhood (which has a traditional Muslim population.)  I also resembled an overgrown Smurf.  Eventually, all that came off.  Due to the incision, Baby Shampoo and Dial Antibacterial hand soap were my showering weapons of choice. Eventually, the sutures dissolved.

I’d like to say that’s the end of the story, but – so far – it’s not.  The bleeds left me with Temporal Lobe Epilepsy (TLE) – an adventure in and of itself.  Like Migraines, Movies and TV have misinformed the public as to what Epilepsy really is. Like most medical conditions, YMMV. Everyone’s different. With epilepsy (aka “E”), you don’t always fall down, twitch and foam.  Sure, that’s dramatic on-screen. But reality can sometimes be… different.

For instance, brain injuries do fascinating things to one’s personality.  Increased talking. Memory deficits. Thank God there’s such a thing as Smartphones, and apps that help one take notes. I constantly find myself unable to recognize casual acquaintances’ faces. Or remember what I said in conversation yesterday. Then there’s that loss of inhibition (Imagine being as loose-lipped as when you’re drunk… but without the slightest buzz. It’s almost Stream of Consciousness fun – like you’ve been granted the Robin William’s gene. Another loss to the world – RIP.)

Then there are the mood swings, due both to the epilepsy and the Anti-Seizure meds. Including a little thing called “Keppra Rage.” Y’know, those organs in the Limbic system can be tricky; especially the Hippocampus and Amygadala.  Mess with them, and it’s enough to put one’s career on ice.  And when you’re 40 plus, HR departments don’t like to take chances with disabled hires… or people forced into a vocation change.

And - good luck paying for crucial medical follow-ups, when your employment prospects vanish without a trace. Through absolutely no fault of your own, you find yourself paying for medical insurance yourself. So much for that IRA!  As for Social Security Disability in the US?  It’s a byzantine system at best: particularly horrible to navigate when you’re battling illness – something that people can’t see, that’s in your brain.

Fortunately, EEGS are tons of fun; both the ambulatory and in-house kind.  (Let me clarify – that’s a tongue-in-cheek description, in case your sarcasm radar’s on the fritz.)

Like Rod Sterling of the Twilight Zone, imagine if you will:

Twenty electrodes glued to your head. Along with a turpentine smell. The cords snake done the back of your head into a ponytail, making you resemble Star Trek’s 7 of 9.

Then imagine going home on public transportation like that, while attempting to remain quasi-cool.  I don’t have to imagine it; I’ve been there and done that. Sadly, doo-rags and baseball caps just don’t fit. Amazingly, no-one’s ever tackled me as a bionic terrorist. Or moved away from me on the “Group W” bench. (If you don’t get that reference, listen to Arlo Guthrie’s Alice’s Restaurant - right away!)

Speaking of “Alice”, then there are other symptoms that people with Temporal Lobe Epilepsy get. One of the coolest sufferers was Louis Carroll – the writer of Alice in Wonderland himself! Everyone knows his iconic images: Alice growing larger or smaller. Most people assume that’s the literary description of a drug trip. Which it’s not; it’s how seizures sometimes feel. Louis Carroll had them. As did many other literary, artistic and historical giants, including (allegedly):

Vincent Van Gogh

Robert Burns

Fyodor Dostoevsky

Edgar Allen Poe

Joan of Arc

Lord Byron, no less!

There’s also this little quirk called “Hypergraphia” – part of something known as Geschwind’s Syndrome. It occasionally strikes TLE patients - resulting in Stephen King-esque writing speed. If one must make a pact with the Devil and go through Cavernous Malformation and TLE Hell,  prolific writing is a major sweet spot of the deal. (BTW – I do write screenplays.  In fact, I pretty much can’t stop. Too bad there’s no Craigslist postings for jobs that pay a living wage - where you can stay at home with no distractions, write whatever comes into your head, and not worry about lacing into someone during Keppra rage.)

And that’s just the icing on the cake.  Speaking of cakes, there’s one I once saw on my Cavernous Malformation support group; a woman custom ordered a “brain shaped” cake for her neurosurgeon, complete with a Strawberry flavored brain berry on top!  For me, it was a major LOL moment – not to mention a sterling example of the humor one should maintain, when faced with medical challenges like this.

Since my diagnosis, time has passed quick. As of this writing, it’s been over a year.  Throughout this “adventure”, I’ve met many wonderful, brave and sweet people – ones who have gone through far worse than me.  Their company is something I wouldn’t change for the world.

A few years ago, the ALS Ice Bucket challenge brought important awareness to Lou Gehrig’s disease (a medical condition that killed my father over thirty years ago). 

If this essay sheds even a bit of exposure on Cavernous Malformations and TLE, that’s major awesome sauce to me. Complete with a strawberry flavored brain berry on top!  :P

NOTE: For more information on Cavernous Malformations, please visit the Angioma Alliance on their Facebook group here: https://www.facebook.com/groups/21515208367/ or at http://www.angiomaalliance.org.  Because as amusing as I hope this essay was at times, Brains Should Never Bleed.

AND FOR INFORMATION ON TEMPORAL LOBE EPILEPSY: This Facebook group is hard to beat! https://www.facebook.com/groups/temporallobeepilepsy/