Brain Surgery Color Commentary

It is not super fun in the hospital.   But everyone is nice about it.

This  first part of Deep Brain Stimulation surgery is supposed to be the most “uncomfortable” part of the two stage process.  This is where they had to have perfect control of my head to accurately send electrical leads down into the mysterious depths of my brain.

  

The word, uncomfortable, is code for, “This is going to challenge your current definition of sanity, so try not to emit any sounds that could upset the other patients in pre-op ok?”  All of whom sat up on their gurneys watching the proceedings with wide-eyed half-sedated interest. 

Dr. Foote injects the locals. I connect with my Neanderthal ancestors.

And as we got me ready for brain surgery, I could hear more than a little “There but for the grace…” and “Bless her heart” sympathy utterings combined with the “Ooohs” and the “Oh my Gods” from those who couldn’t filter their reactions to what happened next.

Screwing in the bolts

There is digital proof, however, that I smiled and chatted and babbled while a halo of stainless steel was lowered onto my head like some steam punk crown.  I was the Queen of Deep Brain Stimulation. The second of four scheduled for that day.  There was a little of that production line feeling about it all.

Dr. Foote, a naturally gifted teacher, carried on a quick efficient running dialogue pointing out the whys and wherefores of the procedure to his ever-present entourage of students. He injected lots of local anesthesia at four sites on my face and head where the pointy screw-in pegs were installed to render the crown inexorably bolted to my skull bone.

Fully crowned and cranky

Apparently my face looked like some punk body mod of egg-sized bulges above my eyebrows.  They went down fairly quickly resulting in a blessedly numb scalp and face.  

But not before I was deemed by onlookers to look like a Neanderthal in a trap. Which, under the circumstances, was hilarious.

Even when I heard the back left bolt grind into my skull with a crunch, I maintained.  I am a good patient and a Doctor’s daughter so I just held on to those two thoughts.
 

My team: The gorgeous Dr. Foote, Pam the no-nonsense OR nurse, and a sweet student guy whose name I promptly forgot.

 This is Part One.   There will be more about this soon.  I have been recuperating from both surgeries and the going  is slow. But I don't shake anymore...    Mark2:1-12

Ghosts, Orbs and Entities: My Fault,I Went Lookin'

^{Kangaroo.  Not scary.}

Satisfying our mutual and natural urge to wander, I traveled with my teen aged daughter this summer. We hiked around the Smokey Mountains, had facials, went to the Indian casino, and found a kangaroo farm out in the middle of nowhere Georgia.
But from the jump, we made a plan to fulfill our interest in visiting a “haunted hotel” in the South, and ultimately ended up for a night at the Inn at Merridun in Union, South Carolina.

This antebellum inn is widely known for its “haunts” and good food.

We were not disappointed either way!

^{The Inn at Merridun}

On the outside, if you squint, there is a glimpse of this mansion’s glory days when it was central to a booming cotton industry and anchored many square miles of property for the family by which it was owned. The echoes of steam locomotives chugging by, laden with white drifts of cotton, linger on the tracks not 100 yards away from the front door.

The gracious porches, where sparkling entourages of lavishly dressed guests were once greeted and ushered into the house for society balls, roll now like a set of ocean waves, the marble tiles pushed up and sunken down at intervals.

Looking up, all is overarched by a tin veneered ceiling gone green with dripping corrosion.

Now in unremitting dilapidation, the entire house seemed as though it is melting gracefully into the landscape drawn down by gravity and unseen tendrils of kudzu and mildew pulling it earthward.

No line is plumb, no angle angular.

It is a rounded dowager, an aging belle, stuffed with a profuse collection of delicious antiques, lolling on a green throne. She is holding court anxiously awaiting imaginary suitors to fill her dance card with waltzes and reels.

^{The Girl. Hunting.}

Naturally, upon settling in, we went into our “Ghost Hunter” mode. Since we were the only party staying at the inn that night, we gleefully explored every possible space in the mansion for cold spots, fleeting peripheral sightings or disembodied voices.

We ranged around trying to whisper and tip toe from the gentlemen’s sitting room on the first floor to the ballroom on the second. Ballrooms in those days were situated above the “mosquito line” for the comfort of the guests.
 
We heard a ghost dog barking, footsteps above our heads, felt cold tentacles embrace our legs, saw a shadowy sad man leaning over the balcony, and heard far away laughter with piano music.

And always the train going by on that discontinued spur - all distant and lonely and muted like the volume was turned down.

Imaginations overwrought, we just wound ourselves up into a susceptibility of the most exquisite degree.
We took gobs of pictures hoping to catch an “entity” digitally and did catch a few creepy photos with smoky ectoplasm and orbs in them, we think.

^{Just above the picture - See the orb?}

Assigned to the ground floor suite called “The Senator’s Room,” really the only scary thing about it upon first examination was a framed and signed photograph of Strom Thurmond next to one of Jimmy Carter, both of whom apparently stayed there at one time. I thought it might be disconcerting enough getting to sleep with those two evil birds gazing down from above the spooky black painted fireplace!
But they were the least of it, as it turns out.

Of course, as if on cue, the atmosphere literally became electrically charged when an unbelievable summer storm enveloped the place as the sun went down. Static was snapping and popping all around and ozone scented the air profusely. I could not have ordered a more appropriate special effect had it been a movie set.
My ever-so-mature and intelligent theory on “ghosts” up until this point is that they are merely “echoes” of past energies left behind by really passionate and particularly distinctive humans.  Their personalities were just too, well, interesting not to leave an indelible imprint on their environments.

Basically, I contended with a haughty confidence born of sublimely misguided arrogance, these energies are like a television broadcast possessing no sentient thought, and no purpose. Just recordings replaying until the battery runs out, if you like.

So, going in, “I ain’t scared of no ghost!”

Not until 3:11 a.m. in the morning anyway.

I awoke in our dark room with just the gleam of a streetlight streaming through the window. T was oblivious next to me snoring and cooing in her sleep a little as she does.

^{The sitting room. Orbs everywhere!}

Then I heard a voice coming from the sitting area in the room.

Clearly, closely and not in my head. It sounded like an old woman but had a childish tone as well. She said:

“This is the kind of paper that…”

Then she paused and said it again a little louder sounding slightly annoyed.

“This is the kind of paper that we…” 

And then…nothing. T continued snoring.

I smiled. Now I had finally heard my “entity,” my “energy recording from the past,” and congratulated myself that our adventure there was worth every penny; the fun factor was off the chain. Great story to tell!
Confident and content, I rolled over positioning myself back to back with my squishy snuffling little daughter to sleep.

Then, directly in my ear, sounding as though the talker was standing over me, I heard,

“This is the kind of paper that we use, LINDA!”

And what was my cordial, measured and winning response?

I told a ghost to “SHUT UP! SHUT UP!”

My southern-bred charm, poise and manners flew right out the window with what I imagined to be a very offended specter.

T emerged from her stupor only to say, “Mom I didn’t say anything! Why are you telling me to shut up?” From her vantage under me, because that is where she ended up, all she could see was me - white faced and growling, eyes bugging out and poised on all fours like a mother lion. I was unconsciously pushing her behind me trying to shield her from…

Nothing.

I still struggle with the embarrassment of that moment and harvests of goose bumps pop up all over my lily white skin even in the telling of the story.

Needless to say, in a flurry of dramatic flapping on my part, the lights went on, the TV and my computer were powered up. I made every modern electrical contrivance work to repel any more ghostly encounters for the night. We were left alone, ultimately, and I think it was because I was so rude.

Well, mea culpa all to heck.

The innkeeper, a lady called Peggy, explained the next morning over a beautiful breakfast, that the resident ghost from our room, a certain Miss Fannie, expressed to a visiting psychic (with whom she apparently had a better encounter than I) that she was not pleased with the renovations made to the inn.
She was especially annoyed that the wallpaper had been replaced with plaster and painted.
Apparently, Miss Fannie was the bossy old-maid business mind behind the plantation for many years, ran the massive cotton farming operation there, and evidently ruled every one’s life there as well!
She was also quite the prude. Her ghost allegedly confronted newlyweds after evidently being disturbed by their, ahem, newly-minted marital hijinks in the wee hours. Called the bride a “harlot!”  Loud and clear.
As we drove away from the Inn in the radiant purging light of a summer midday in the south, T said she was going to miss the sound of sweeping. She was certain she heard someone tidying up as she was going to sleep the night before.

^{The sweeping porch.}

“Didn’t you hear her on the porch outside our room Mom?”

I didn’t.

We were the only ones in the Inn that night, but the ghosts dish up what we might need to hear at any one moment in life.

My message was one of humility and T was gifted with a scratchy primitive  lullaby leading her to sleepy comfort.

I come to find out that there was a sweet black nanny who purely loved the children for whom she tended at the mansion. Many had seen her apparition gently and rhythmically sweeping the porch outside the children’s rooms as she waited for them to settle down and sleep.

It appears that love, among many other emotions, lingers on.

***

I've taken a lot of pleasure telling this story set at the Inn.

 Be sure to visit and say hello to Ms. Peggy and her friends:

The Inn at Merridun, Union, South Carolina

A Hole In My Head

I am cutting my hair very short today so a man can drill a hole in my head.

Long hair has been my last luxury of youth; a hold out against becoming a little old lady in purple polyester pants and cat’s eye glasses bobbing on my ample chest from a bedazzled string.  I am told that it will never come to that for this child of the 60’s.  I’ll be resplendent in my latter day hippie chick attire for the rest of my days.

But the hair’s got to go.  I am doing it in stages.  The last harvest in December sent twelve inches of auburn hair to Locks of Love. This crop will not yield those kinds of results.

All this angst and concern is because…?  I will be having Deep Brain Stimulation surgery in a couple of days.  It will, with any luck, reduce or eliminate some of the tremors, ticks, freezes, falls and, yes, pain that Parkinson’s creates. And the time is right since the medications I have been taking for a near decade are no longer working.

Dr. Foote and Dr. Okun do a TED talk. They are so COOL!

In fact, they sometimes amplify my symptoms causing me to rock and flap and kick my legs is a hellish ballet.  Sometimes my toes cramp up so hard they feel as though they will break into shards.  My left leg is turning inward causing knee and hip pain and a strange loping way of walking. And the beat goes on…

Brain. Beautiful brain.

There is electrical chaos in a part of my brain called the substantia nigra.  The cells there, in stages, have gone rogue or died ceasing to function; ceasing to send the synchronized signals to my muscles. The celebrated Dr. Kelly Foote of the University of Florida Movement Disorders and Neurological Surgery Department will open a hole in  my skull about the size of a nickel and will thread electrical leads into my brain carefully searching for the “target.”  A device similar to a pacemaker imbedded in my chest will then control those maverick electrical pulses rounding them up and organizing them into nice synchronized herds.. 

Airport security is going to be a treat now with all those bionics. And, I may come to fear garage door openers…

Cringe alert!

I will be fully conscious throughout this procedure.  My head will be enclosed in a cage rendering me immobile while a CAT scan and an MRI work in tandem to locate the target.  It is going to be wickedly scary and difficult because my neck and shoulders will fight hard against being forced to be immobile.

 H. Bosch's depiction of a primitive brain surgery scenario. 

We've come a long way from that

Here is a comforting fact:  Apparently boring holes in people’s heads for medical reasons, called trepanning, has been a widespread practice since 5000 years B.C. for “medical” reasons.   From fossil human remains they found that some survived the ordeal and lived a long time.  Shands Teaching Hospital in Gainesville, Florida is assuredly a far superior place to wield the skull bore and poke around in my brain, so I am encouraged.

The act of typing is hit or miss, and the constant typos I tap out wear me out. Too shaky. I rest and recharge between typing paragraphs, which is disappointing.  I really want to write again and add to my collection of short subjects. But, on the bright side, where I choose to hang out, when we get through this we’ll have a toast.

I am the best martini maker ever. 

Shaken, not stirred.

  

Friends, If you all would kindly send your energy, prayers, meditations, out of body presences to me Wednesday, September 18^th when I will be undergoing this amazing technologically advanced procedure, I know I will feel wrapped in connectedness and healing because you’ll be right there with me in spirit.  It will be life changing…

Home Style Exposure Therapy

Me. The perfect subject for Home Style Exposure Therapy.

“The frog! The FROG! Noooooo!”

There was a full grown one in the front driveway and it was after me.  I tunneled into the plant bed which was my very best choice of hidey hole.  No one could ever find me there when we played hide and seek. It was full of pointy Spanish sabre spears and smaller prickly succulents that gouged and stung my legs and squished under my bare feet.  

I squatted making myself smaller hoping it-she, wouldn’t see me. 

 

The giant frog was dressed in a full bib apron and a flouncy white mob cap like an obscene Beatrix Potter/Charles Dickens cloning experiment. I had the vague notion that she was my babysitter and I was being bad making her chase me. I was terrified of the consequences. She breathed a menacing wheeze like hissing, clicking and crickets. 

She was angry. 

Worming further into the foliage, I prayed that she would pass me by. But she only grew closer swinging her webbed feet in a heaving flopping stride. My panicked breathing, ruffling the leaves around me, drew her attention. She slowly turned her misaligned shiny face toward me.  A new stream of crickets, clicking and hissing sounds spewed triumphantly from her wide upturned ruby red lip-stick adorned lips.

“Dere yuh arrrreee.  Yuh neeeeeds t’commmme wit me liddel missssss.…sshhhhhh.”

And she reached out her slippery wart-covered manicured hand. Fire engine red nails tipped her fingers. As her tentacle fingers wrapped around my wrist, I filled my lungs with a huge draught of air preparing to light the fuse on an ear piercing scream.

“What frog? Wake up, Linda. Where’s the frog?”

Mom was sitting on the edge of my bed shaking me awake breaking the grip of that hideous dream. “I keep dreaming about her Mom. She comes looking for me every night! And she’s getting bigger.”

“Every night?” said Dad, leaning on the doorframe, grinning so I could see the distinctive gap between his front teeth. “Why do you think she does that?”

“I don’t know Dad, but I need her to go away. She scares me.”

Mom, her brows furrowed, said, “Now, I told your Dad that this could be a very bad idea, but he has something for you.”   

I hadn’t noticed that he had his hand behind his back, and all the horror of that recurring night terror began to fade into pink and purple unicorn prancing little girl glee. 

I was getting a present!

“I think,” said Dad, “This new friend is in charge of making that bad nanny frog stop chasing you. He made a promise to protect you.”

Frog.

He tossed a big green frog on my bed at my feet. Not a real one. Stuffed like my Teddy Bear and my Lion. 

But I still jumped up so hard I bumped my head squarely on my bookshelves over my headboard sending a cascade of storybooks to the floor.

  

The frog. It was a Steiff toy stuffed animal, soft and grinning and sporting realistic markings and a pink tongue, just like a real frog. Its shiny black eyes glinted at me conspiratorially. We were going to be brave slayers of nightmares and bedtime buddies for many years to come.

I loved Frog on sight. 

I was, however, a tad pissed that Lion and Teddy Bear had not stepped up earlier in this saga.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fort Lauderdale was the city of my birth. My parents were the “Where the Boys Are” generation and as the hipsters of that generation, they loved to hang out on the famous Ft. Lauderdale Beach at Las Olas Boulevard. All of their photos from every angle had the iconic Elbo Room bar in the background. Mom and Dad and my Aunt Polly (Dad’s younger sister) were the original denizens of Spring Break where one could walk into the ocean without touching sand because every square inch was covered with bedspreads and beach towels and prone students slathered in baby oil and zinc oxide. 

There was a strategy to a beach day. We met up with Aunt Polly who would get there early, a cup of coffee in hand, to set up a family headquarters complete with magnetic playing cards for breeze proof bridge and a transistor radio.  She had cool beach toys too, and if I bugged her persistently enough, she would rent a big heavy rectangular rubber raft so I could go out and bob on the waves with her and look for fish.

Young single men who were part of my parent’s social circle would “borrow”a me, a goofy little blonde gap-toothed three year old girl, to “take a walk” up and down the beach. Within ten paces, these dorky Dobie Gillis/Maynard G. Krebs type guys wearing big grass Bahamas hats or sailor caps would magically transform into irresistible chick magnets. All the cute girls in bikinis would mob them cooing.

Looks like one of the guys who borrowed Wing Baby.

At a very early age, I was apparently a “wing baby” the perfect bait for these guys fishing for dates.

“Oh, what a cute little girl! Is she yours?  No?  You are married? No? Wow! It’s so evolved that you babysit…Do you like children? Mind if I walk with you?” 

 

Wing Baby was 100% successful and I got ice cream if I didn’t fuss too much.

Portuguese Man 'O War and Sargasso Seaweed

There were times when the beach was not so hospitable. The wind would shift and itchy critter- filled Sargasso seaweed would festoon the beach in fishy smelly piles. And, even scarier, big iridescent blue bubbles washed up trailing very long cobalt blue stinging tentacles. Some that hadn’t beached themselves yet would bob on the swells looking like alien sails on otherworldly boats.

Aunt Polly, a beloved and celebrated kindergarten teacher, always made things fun though, even on one of those non-optimum beach days. She taught me how to shake seaweed over a beach pail and observing little crabs, shrimp and even seahorses swimming in the cool water.  And we would find sharp sticks of driftwood to pop the scary big blue bubbles, called Portuguese Man ‘O War, being very careful not to step on the blue strands of stinging tentacles draped for several feet behind the bubble. 

 

A man ‘o war sting, a neurotoxin shot into the skin via tiny retractable barbs, causes terrible pain. One little detached inch of tentacle on the sole of the foot could ruin a whole day.  So we took pains to just poke the bubbles and enjoy the satisfying pop.

And we never, ever swam with them. 

You never could tell how far those tentacles could play out from the bubble in the water. Could be inches. Could be yards. We found out.

Aunt Polly was absorbed (winning) in a hot game of bridge but I wanted to swim and I was becoming a pain with my requests every 5 minutes. Her friend Joan, a fellow teacher, offered to take me out to bob around on the waves with her.  So we raced and splashed and giggled into the crystal clear ocean water on that perfect beach day.

  

Schools of shiny silver fish flipped and flowed around our legs and they tickled.  It was pristine, magical and we played mermaid. Joan held me afloat in her arms and I practiced my dog paddle. I stood on her shoulders and jumped off trying to make cannonballs.   

Off in the distance on the top of a wave, I thought I saw a flash of iridescent blue and I asked Joan if it was far enough away. It seemed very far away, but we decided to be safe and head back to the beach anyway.

Wet strands of string and thin threads wound around my legs. Joan looked down because she felt a similar sensation around her legs, waist and chest, like some kind of tangled maypole was binding us both. Quickly, she knew what was happening. She lifted my 4 year old body up over her head like I was a wriggling barbell and began thrashing and screaming toward shore.

On a diabolical synchronized chemical signal that surged throughout the entire organism, every stinging barb in those cobalt tentacles simultaneously fired; my legs were consumed in blue flames. 

Before my vision irised down to a pinprick and winked out, I saw Joan’s anguished face. She was powering though the swells of waves and unimaginable paralyzing pain holding me over her head while the man ‘o war continued to wrap her with new tentacles. 

I saw my legs kicking the sky wrapped in blue electric stinging strings intertwined with red welts moving up my stomach.

I saw my Aunt Polly flinging playing cards into the air and running into the surf to pull us out…

Joan, Aunt Polly and I were off to the hospital where our stings were treated with toxin neutralizing ammonia, and painkillers. Aunt Polly ended up stung badly in the hands and arms from attempting to pull off the tentacles from Joan and me as she dragged us to the beach. 

I still didn’t have a clear idea of what had happened. Trauma does that.

My Dad joked about pee being an antidote for the toxin. 

"We could’ve skipped a trip to the hospital if we'd have just stood in a circle and peed right on you!"   That was not particularly funny to me. Aunt Polly and Joan laughed a little too long and hard about that one. They were both still a little shocky from the incident. 

Patricia Murphy's Restaurant.  
My fave because it was like a fairy garden.

Everyone was particularly concerned about me since, always normally offering up the Lindy Wall of Sound, I had very little to say after the accident. So I waited until we were all at dinner at my favorite restaurant on the Intracoastal, Patricia Murphy’s before I dropped my grenade.

“I am never going to the beach ever again.” 

 

I grabbed a warm yeasty popover from the basket with a real linen napkin cradling those pull-apart delicacies. I had a jones for those rolls.

All the adults stared at me and an awkward moment was savored by all. They sipped their drinks and tapped ash off their cigarettes. And then, Dad pulled a shopping bag from under the table.

Here came the pink and purple prancing unicorn little girl glee which nullified the darkest of thoughts.  I was getting a present!

“Linda, you love the beach. But we won’t make you go there any more if you are scared. Let’s talk about all the things you would miss out on if you didn’t go to the beach again.”

And Mom said, “Even if you never ever go to the beach again, we have a little something for you to keep your seashells, beach glass and maybe some beach sand in so you can remember how much you loved it.”

“Or you can just make it your purse…” offered Dad.

And from the bag came a sparkling clear blue plastic bubble purse that looked like an unpopped man ‘o war with no tentacles.

Well, ok.  I did have to go back to the beach then.  I needed some seashells and glass after all.

S'me. Ain't 'fraid o nothin'!