The Phoenix and His Decade of Decadence

There was a time when I was an avid reader.

One of the things I loved most was the sectioning or scoring of great novels. Each "Part"  finished with a semi-climax, but the story wouldn't end. It kept going, building and getting better. I guess, it is meant to be like acts in a play where the lights go dark, the audience is left hanging, and that massive black cloth tumbles to the stage.

Well, my life has had a few of these...but in the coming days...the largest of them all will fall upon me.

And tonight, I had a last supper of sorts. It was a quiet, wordless, meal between two people who knew their course had been run. Why no words? Because there was nothing to say. The tears rimming our eyes were enough. They held ten years worth of memories...some precious to her, others to me...but sacred, private.
(For that one, brief, moment we were almost normal people.)

We had given each other permission to leave and let the other know we would be alright. Funny...she was just as worried about me as I was about her. "It's okay, go." That's what those held back tears said.
All pretense has been pushed away and packing has already started.

This time next month, probably much sooner, over a thousand miles will stand between us. She will have a new life...the best life in world is what I pray for her. It is a devote prayer. I ask for a life of joy and happiness, one of contentment and peace...laughter.


And me...the Phoenix, will have started his cycle again.

...sigh...

Fine. I am taking flight...

But if I am the Phoenix...then that means I will be flying into the Sun and lighting fire, very soon. I can't shy away from any pain if I want to be reborn.

"Fall down seven times, get up eight."
-Japanese Proverb


A decade is a long time...a quarter of my life....how many more of these do I have?


I guess, I'll be finding out soon enough.

.
.
.
.

My Internet will be going out soon...very soon. So, this will be the last post I make from my laptop, for awhile. The next time I turn it on, I will be alone and in a new home.
I am not sure which is stranger...the idea being alone or moving so much in my life...I don't even know what "home" really means. I would give a number on how many times I've moved in my life...but no one would believe me.
Oh, well...

Gotta fly!!!

You're not crazy...not yet.

"No, you're not crazy...not yet."

Once it hit me, that those words had actually been directed at me...
After I realized they were coming from the lips of this tiny Indian woman, my neurologist...
Gigantic and uncontrollable tears, happy tears, blistered in my eyes.
Ha! Who would have thought, huh?
Everything had so quickly changed. I was positive no one, not a single person on Earth, could understand the unthinkable drama actually miming around in my head. Oh, my god...it was some kind of muted freak show!  Yet, she did... She did!!!  This woman did!! Such utter relief!!!
You know what she told me next, though? In a calm,  confident voice she said, "But if you don't get this fixed...you will go crazy."
The woman is at most 5' tall, still in that moment...she was my Goliath, Mighty Og.
Propped silently in a swivel chair like a figurine, she spun to face me.  This small being, her soft dark eyes and dangling feet which didn't even touch the ground...she was able to tower over me. Oh, how I wanted it to be so simple as casting a spell or wearing charm and all of this would be over.
I was at her mercy. But I saw no staff, no crooked pole she would magically wave, only a  keyboard she used for taking digital notes rested in her lap.  The distance between us helped me understand how cavernous the office really was, how small I was too. I felt swallowed.

I needed help. Badly.


I have epilepsy.
That is nothing new. How it hit me, is. Well...that's not quite right.
How it stuck with me...that's was new...horribly new.

Like anything, epilepsy comes in various forms. There can be nearly as many types of it as there are flavors of ice cream. Left alone, epilepsy evolves into an ugly "lifeform." It flares and bites, injecting unpredictable quantities of venom.  You never know. The seizures could be nothing more than an annoyance, like finding a small swollen and itchy spider's lump under your sleeve...or...they could be devastating things, powerful, even lethal strikes, close to that of an adder....or constrictor.
Me? I have Grand Mal and Petit Mal seizures. I do not know if it is rare or common to have two types. I just have them and it is "My Life."

Unlike many, I have been blessed. It has not always be this way for me. Some go their entire lives waking up taking pills, having the pharmacist remember them by  medication type (because that's so much easier than names), planning trips around over-stocked supplies of meds, wondering worst-case scenarios to "seize"...who may see? Not everyone with epilepsy is so fortunate, because my life has not always had these concerns. I am thankful. Very thankful.

A little over a week ago, a series of Grand Mal seizures came for a surprise visit. For me, this is odd, exceptionally so. I normally only have one every six months to a year. Most of the time, they come during Winter while an unusually bitter spell drops in from the North.

Four of them overtook me in as many days. Stranger yet about this cluster, they happened in the evening. Three of the buggers got me when I was fast asleep. (As a general rule, mine occur in the morning, but never after Noon.) So, as you see, the entire set up was foreboding in a way.

Many seizures are identical to knockout punches. The person on the receiving end has no idea what has happened. Lights out.  That is especially true with the Grand Mal...
So, I awoke in the early hours of  the AM, when it could almost still be called "night." I found cold, dark spots on my bed...close to my facial area. The low light helped these patches resemble coffee stains.  With some stale iron taste and flakes of gummy flesh bobbing around in my mouth,  I soon realized what I was seeing. That's blood. The source of the little puddles became clear, instantly. It had been leaking from where I had chewed my tongue and cheeks in convulsions.  The soft tissue surrounding my teeth felt nearly pulverized. My arms and legs were stiff and sore. My head ached. Damn...a seizure.
But there were two puddles?
Did I have two? No...
I felt around in my mouth. Yep. Both sides. Two seizures.

I let this pass as...alarming...but not much more. Oh, well.

The next evening, I had another in my sleep.

On the last day, I had one more Grand Mal when I came in from smoking. However, something else happened, as well. I had a very large Petit Mal seizure. Oxymoron, I know.  She, my doctor, thinks it might have actually been a new animal for me. The generic name is a "frontal lobe" seizure...but once it started, it lasted for several days.
(It is also possible I have had these before.)
But back to what we know I have....
..."Seizures for Dummies"...
The difference between Grand and Petit Mal seizures is you don't lose full consciousness. You are awake the whole time.
Grand Mal seizures are the Hollywood seizures. The flip and flop kind. (calm down...I have them, I can jest) A Petit Mal can be as simple as staring off into space or bouncing in place for a few seconds. There are other aspects to it too (rather embarrassing), but understand...you are not there. It's similar to a forced daydream, but with nothing on your mind. Blankness. As soon as it is over, however, you snap right back. There isn't much recovery, only lost time. You can see  videos of these on Youtube.

The "event" which happened to me, oh this, was vastly different. My whole thought process was disrupted. It was bigger than any Petit Mal seizure I have had in a long long time and, this much time later...I still think I am battling it some.


Looking back, I see I held a two-fold advantage going in to this many people don't. The most important, and one I will get to shortly, is a friend who wouldn't let me "break." And believe me, I was there. NO I mean it, I was there. 
The other, was a vocabulary and use of analogy. I pulled them out like a hammer and sickle (a couple people  will like that). I was able to explain to my doctor what was happening.

Seizures can be preceded or pre-cursed by an "aura." Many people have a difficult time explaining what that is and the closest description is "Deja-vu."
The seizure I had, I believe, is called "Aura Continua." The name makes the thing obvious. Does it not? Don't you see why my doctor told me what she did? 
"...not yet."
No?
Hmmm....

I believe John of Patmos was an epileptic and the revealings in the Book of Revelation...are nothing more than Aura Continua. That is how vague, yet horrible it is.
In the however many days it was I suffered through this long seizure...I nearly lost myself.


I will do my best to explain it...and name, without naming, the person who REFUSED to let me go...



My piece of the world shifted ever so slightly. At first, I could hardly notice. Objects leaned maybe a bit too far, nothing blatantly perceptible, not really. They were technicalities you would almost have to look and listen for...one too many shadows from a light bulb, an extra ripple in a pond for no reason, an echo which resounded a bit too closely . You get what I mean, shit you don't care about but is important for some reason.
But with each minute, each hour, my certainty grew....no, this was wrong...really wrong.
Before long, it was obvious (to me) I was in trouble. I started quietly backing myself in corners. I resisted the urge to reach at my ears, to brush my hands at my eyes...because was nothing there...and I knew it.
I wanted to look over my left shoulder.
Why?! Why would I want to do that? I was in the damn corner?!
And that was just the start...
I had days and days more to go...

The worst and truly tormenting aspect of the seizure once it kicked on all the way, was this "non-vision" it created in my head. A storm cloud of confusion descended on me.
It was as though I HAD to continually reach for "something," an image or thought. It was just hanging out there in my mind waiting to be seen, but not close enough to get to.  
Damnit....nope.
Initially, that's all this was. An odd question of sorts. A puzzle.
...but it never quit.
Ever.
Imagine the frustration of only being able to get close to "Eureka!"  but banned from getting there. I have a torture for you. Forever and eternally almost allow someone to remember things...Let them get close, but not there...Having a hard time getting that? You know,  what I mean. The struggle you go through to find a name you have forgotten....Always trying to get to your epiphany and never hitting it, the constant battle... The "what is it?!"
What if that is all you had? What if there was nothing to remember at all?
That is what my seizure was...trying to remember something that never was.

It is final step without ever crossing over.
My seizure was...always hanging on..always searching.

I saw all of this in the first hours. Relentless poundings of the same followed...for days. 

Say you know, just know, there is something you are missing, but when you stop to think about what that "something" is...it drifts away. ALWAYS. Pretend you are certain, absolutely certain with all of your being, that you have forgotten something very very important. Yet, when you stop to remember what it is...you can't. But you know...if you pick up and move on...you will remember it. It's that close.
It is the "Thirst of Tantalus."
It's the missing ingredient you can taste, but not name.
It's bending over to pick up your hat...and forever kicking the damn thing down the road!!
No, this time, this time I'll get it!!!
And each time, because the hat is so close...you are sure you're right!!!
It is something off to your side, turning with your every turn, but purposefully being not quite fast enough to be a proper mimic.
And because all of this happens in your head...at the the speed of light...you can hardly notice.

But you do.

It's that tune which repeats in your head over and over...but  you can't remember the name of. It's the end of cord you just can't reach or the movie you never get to see the end of.
But it isn't as simple as that...
Remember when how I said epilepsy becomes a "Lifeform?" That's what this is. Aura Continua is a lifeform which refuses to be forgotten. Once it starts, it won't go away. It nibbles. It chews. Forever. Every dream. Every breath. Every time you take a piss or look away from the mirror. This lifeform follows you and surfaces for air.  It wants you to "see" it, but when you try...it steps back. No, it runs and hides behind objects purposefully too small to conceal itself, but large enough to make out a "shape" of some kind.

There were instances I knew...KNEW...the "event" would end...if I could just seeeee...

...whatever was hiding from me. Yep, that would solve it all.


But, that is how this "thing" feeds.
The more you try to think about it, the more you try to sort it out...whatever "it" is...this thing only grows stronger, hopelessly impossible to see. Aura Continua demands focus but will not allow it. Escher could never have dreamed such a beauty. Futile to think about and necessary to try at the same time. The creature allows you to view single adjectives, strings of mismatched nouns...nothing more.
Soft. Dog hat head table. Black. Then nothing again...

It becomes as meaningless as six clear pages from the Bible stacked on top of each other, displayed through the glow of an overhead projector. Each of them is smeared and smudged in its own way, even typed in different fonts. A message is there. "Something" is written....what?!?!
That is what was going through my head...and yet it wasn't even close to that reasonable.

I have always prided myself on my mind, on my wit. I loved how articulate I could be. So, I knew this was some form of "just desserts"  for life I have led...things wasted and tears my parents must have cried over me. Case closed.  I was being driven insane and I figured I deserved it. Hell, colors even began to change. Emoticons on my phone and in chat looked different...they started coming alive. Everything took on a whole new perspective. I couldn't look at faces in articles. A deep and heavy sense of dread followed me.

I was breaking. I felt the cracks in my sanity opening, parting. I prayed for it to stop...just stop!!!!

Directly under the vent of the air conditioner, I started sleeping in the living room...with the lights on. I needed the place as cold as I could get it, so I could have a reason to pile blankets over top of me and feel the support of the sofa to wrap around me. I felt myself regressing in age. I huddled. My words slurred together like a drunkard's because I couldn't think straight. I couldn't eat. I couldn't drink. I knew I was going crazy.

The only reprieve I had was for the short time I chatted with my dearest, most loving friend, online. Only she knew how bad I was. She told me later, she felt me "breaking" and refused to let it happen.
She was crying...literally weeping...for me.

I have no idea how much sleep she lost for me. 

I hung on to her name...her face...

She was all I had...
And she knew it...

I watched letters splash up on the screen, forming her words which would let me know I'd make it and everything will be okay...And as long as they were her words, I believed them.
Because she wouldn't lie to me.
I took each spare second I had to clutch my phone to my chest, holding it like it was her hand...sometimes kissing it.
Without my knowing, states and states away, she was doing the same when it was my turn...rocking her phone, cradling it.  
Back and forth...we did this for hours...for days...
She begged and pleaded with me to go to the hospital. But, I couldn't. A couple weeks before, when I started having problems with my Petit Mal seizures and knew they were getting bad (and I didn't tell anyone, not even her how bad) I parked my truck far away. I removed the temptation of driving. So...I was marooned. She was my only lifeline. 1600 miles away....she sat with me...crying...praying...feeling as helpless as anyone, maybe more so. (She would never admit it, but she probably thought I was going insane too..but even still her love for me never quivered, never twitched..)

I love her so much. Were it not for her...


Every ounce of bravery I had fell away.
I told her how afraid I was...
I tried to explain the things I saw...

I cried, oh how I cried, when I told her I had to sleep with the lights on like a little child...

And you know what she did? She became my champion.

She told me she knew I was afraid...but she was there with me...she promised never to leave....
She said she didn't understand what I was trying to see...but swore to help me find it...
And then, she offered up maybe the most heartbreaking and tender things of all...

"Well, I sleep with a nightlight. It's okay."
Oh, how I wept at the softness of that!!!It was like a giant stopping to pick fruit for children.

Several times she wrote,  "Just close your eyes and pretend and I am holding your hand," not knowing I was already doing it.
Sometimes, I would get a simple text out of nowhere..."Newberry." or "John."
 ...and that was all I needed.

She offered to let me call her anytime in the night...and just listen, listen to me cry.  She knew how alone I felt...and filled the void.
She stepped over those miles...her heart crossed them...and held me.

A few days later she told me, "I would not lose you again. I would do anything for you."
Yeah...I believe it.
I do.
I have no doubt she would have slung this burden over her shoulder and worn it for me...and me..Me? I love her so much, I would gladly carry it for a thousand years in her stead.

She and I have been through a lot...no...really...a lot...more than anyone will ever know...or believe.
People talk of "soulmates." What she and I are, is inexplicable. We are two souls who refused to be divided. Maybe we are one soul, forever broken and is trying to heal. There is no gulf too large to bridge. There is no length of time too long for us to be apart where we think we are no longer "close." There is no embrace which can come soon enough.
We are simply "best friends." We are a duo. We are a pair, the likes of which, this world and all of History seldom sees.
And she was with me when I needed her most.



And so I went to the doctor...
And I walked in there, knowing, knowing I was losing my mind...going mad...
And I explained to this woman from India what I had been going through...
And I asked her, if I was crazy...
And she said...
"No, you're not crazy...not yet."

And I cried...oh, how I cried.


That's where I've been.

Boyce Avenue - I Want It That Way (Lyrics)

Boyce Avenue - I Want It That Way

We Are Young - Fun. feat. Janelle Monáe (Boyce Avenue acoustic cover) on...

Rusted Root - Send Me On My Way (Table Ten acoustic cover)

Dr. Neil deGrasse Tyson's remarks at Senate Commerce hearing on the futu...

Swimming

Since I was the smallest of children, I loved to swim.
I was always in the water, diving and flipping around like a slippery little frog. It was nearly impossible to get me out once I dove in. It became my second home. Large portions of my Summers were spent with wrinkled hands and shriveled fingers. My entire body was simply waterlogged, I stayed submerged so much.

The best times were when a storm was coming. As that misshapen and compressed wall of dark blue clouds slowly pushed in from the northwest, even the brightest of days dimmed little by little. A cool breeze quickly turrned  cold, icy, against my wet skin. I knew instantly, I was not getting out of the water. I remember the wind kicking in and thick heavy raindrops, the size of marbles, falling...but "under"...nothing.
There, it was oh-so was warm.


Well...
I am ever the one for analogies, and last night another one hit me as I was trying to sleep.

My love life (is that what it is called for men?) is much like my joy of swimming, and in some ways, similar to swimming on those stormy Summer days, the days I liked best, when only the water could keep me warm.
I am sadly seeing I have been far more careless than I should have been. Time after time, I have gone around seeking the prettiest pool I could find. And once I found that pool...I dove right in (I am a man of extremes). I didn't check to see how deep it was or even if the water was cold. I was ready to swim! And once I was in...I refused to budge....until the water drained or I was dragged out.

And you know what I realized? I did same damn thing again!
I saw this pool...and I had to go swimming in it. I had to. There was no stopping me. I snipped the caution tape and kicked down the barricades warning me about the dangers of this particular pool. I laughed at the fools running the other way. Ha! Fine, I had an oasis. So when I got close enough...I took the biggest swan dive a man have has ever taken and aimed directly at the center of that beautiful pool I just could not live without.

The dive almost broke my neck.

I found out, a little too late, where I landed is very shallow. It's not even deep enough for me to swim. If I twist my body the right way, if I contort and turn, I can glide across it at times...but, if I am honest with myself, it isn't meant for a man to be in. I should say, it isn't  meant for this man to be in. I will always think there is a deeper end to the pool  (I have to believe that.) but for some reason I can't get there. There is some sort of barrier I can't see. Every time I try to cross over, I get cut up..hurt. I will forever have the scars to prove it, to prove how goddamn hard I tried.

So, for the first time in my life...I need to get out of the water on my own.
I'm going to get out of the water...I have to face this crisp wind that is coming. But, I'm afraid of being cold.
It is much easier to stay where I am, to float along. However, I know will never really swim.

I've been urged for years to get out of this pool by many people, loving people. And, indeed,  I have tried a few times before...but when it came down to it, I couldn't or I did, but jumped right back in.

What makes this time different, though,  and why and I know I can get out of the water, is because someone stepped out of the bushes, or maybe out of the clouds (a friend, a long lost friend).
This friend has walked up to the side of the pool I am in, tears in her eyes. She's crying for me, with me. She isn't offering a hand to pull me out (...No, I must do that on my own...) but, she is holding this huge warm towel.
You see, the weather is cold outside and she knows it...she can feel it, herself. She knows the chill very well.
And because she knows me so well, she also knows how much I want to swim...how I long for it.
But, she isn't pressuring me to exit the water. She's saying, "Okay, John Newberry, if you want to stay in there, that's fine. I'm not leaving. Let's talk." She understands me, understands if I want to stay in this pool and never get out. No matter what my choice, she'll sit there...she'll be there...for me. For me.
I so love her for it. To try to express in words how that makes me feel is almost an insult to the emotion.

She's my own cherub. 

So, don't worry, I truly have an angel watching over me and I'm going to get out of this water soon.
However, I don't care what anyone says. This was a good pool. I had to take the shot. Yes, it's sharp very very sharp and coarse in spots...but it has some really warm places too. I just wish it was deep enough for me to swim in.