Friday, August 29, 2014

I absolutely know

that it is the combination of very little sleep the past few days combined with an easy 30 hours devoted to finding a workaround to the hard disk problem [which remains frustratingly out of reach - no comments on that, please; I've already gone post traumatic gangsta on myself], but I'm definitely feeling "it" today.

This helps, though. 

Happy Friday!

Tuesday, August 26, 2014

I do guess that you've figured this out already

but I'm pretty scared.  And tired of being scared. Tired of working hard, researching, performing my own due diligence only to have the people who should be in the know drop the ball.  Tired of not being able to be the financial / emotional / psychological strength for friends and loved ones.

It's seriously difficult to put on a happy face each day.

I am not on a path of self harm, but the Tigger in me feels to have left the building.

I follow the news every day and everyone's troubles outweigh mine from Ferguson to the ISIS and I'm just a shitty little kid with a broken brain. 

I wish it would rain so that I could stand outside and feel clean again.

Sunday, August 24, 2014

Saturday, August 23, 2014

Bittersweet [Inverted crosspost.]

The Magnificent Ben has now left the continent.

[Damn you, Bardarbunga!]

NEVER SAY IT IS NOT GOD [poem by Hafiz]

I taste what you taste. I know the kind of lyrics your
Soul most likes. I know which sounds will become
Resplendent in your mind and bring such pleasure
Your feet will jump and whirl.

When anything touches or enters your body
Never say it is not God, for He is
Just trying to get close.

I have no use for divine patience -- my lips are always
Burning and everywhere. I am running from every corner
Of this world and sky wanting to kiss you;

I am every particle of dust and wheat -- you and I
Are ground from His Own Body. I am rioting at your door;
I am spinning in midair like golden falling leaves
Trying to win your glance.

I am sweetly rolling against your walls and shores
All night, even though you are asleep. I am singing from
The mouths of animals and birds honoring our
beloved's promise and need: to let
you know the Truth.

My dear, when anything touches or enters your body
Never say it is not God, for He and I are
Just trying to get close to you.

God and I are rushing
From every corner of existence, needing to say,
"We are yours."

-by Hafiz
translated by Daniel Ladinsky
from the book "The Subject Tonight Is Love"

Tuesday, August 19, 2014

A Week of Strong

After weeks of rolling seizure states and nearly six months of fighting a soul sucking uphill battle with social services agencies whose mission statement is to help you, but whose goal in action is to hinder you, a week of strong, and finally having a neuro and GP who are firmly on Team Jacki, I have finally gone a week without once breaking down and weeping from the overwhelming frustration of it all. 

I suppose that I shouldn't be surprised at how Machiavellian the bureaucratic process is, but overall, the process is demeaning, demoralizing, and dehumanizing, at best.  I wish that every Senate member and Congressperson was forced to take a year without pay, starting with access to only $5000 in checking and savings, little to no access to reserve funds or benefits of any kind and be forced to navigate the system.  Maybe even take away their car, so that they have to reach all of the in-person interviews by public transportation or the kindness of friends and / or family.  It will only make the hours spent on hold or the constant redial in order get an actual place in the phone queue seem like cakework.

Maybe start things off by giving 2/3 of them the flu and in anticipation of the this "year of experience" [something akin to Rumspringa meets The Hunger Games], make their flu vaccination a placebo so that they are appropriately blindsided when they become retchedly ill, in need of medical assistance [which they cannot afford and for which they have no insurance, because the system's process can take up to nine months to review and finalize], find themselves in a position unable to search for work due to long term complications from the flu and are forced to try and navigate a system that seems bound and determined to work against them at every turn. 

With hope, they are married and have children, so they have a chance to experience how the stress of this situation creates rifts and tensions at home and with family in general.  How with friends, the loss of any secondary or tertiary properties, sailboats, yachts, you name it or the ability to host fabulous parties or the clout to be a heavyweight mover and shaker renders them unable to "keep up with the Joneses" and watch as their once inner circles of influence discreetly recede.

To maintain balance, the other 1/3 should have chronic health issues, that, if untreated could result in a serious escalation of health problems or even death, dovetailing their narrative with the one above, beginning with, "in need of medical assistance...."

I wonder how much these experiences would change how they would vote and legislate in the future.  It may be cynical for me to say that it probably wouldn't change much, but I still would like them to experience what real people who have been scrupulously responsible and unfortunate in their luck have to go through at the hands of a negligent government more interested in warfare on foreign soil than the welfare of its own populace.

Yet and still, it was a strong week that afforded a clear mind and so many deserved breakthroughs.  If nothing else comes of this whole circus of a clusterfuck, it's the reminder that I am still every bit the scrapper as I have always been.  This is now accompanied by a quiet determination that backs up my own personal brand of confidence.  It's easy to pull the rug out from under confidence, much less so with determination. As James A. Baldwin once said, "
The most dangerous creation of any society is the man who has nothing to lose."

You rang?

Monday, August 18, 2014

To Do Or Not To Do

[FB crosspost]

I'm so impressed with people who eschew to-do lists. Even before the TBI, my brain has pretty much operated like a toddler on crack. It's a constant cacophony of competing thoughts; some urgent, some fey and fleeting. List making is the surest way for me to reduce my anxiety and quiet that nagging sense that I've forgotten something, which I usually have. That realization comes generally in the middle of cooking something when I reach for the ingredient that I didn't go out and buy or at 2:30 AM when I'm yanked from deep sleep in a heart beat dead stop panic of "shitshitshitshit!"

May I one day have the mental acuity of those who shall not make lists.

Monday, August 11, 2014

Strong Days

Just as no one is created equally, no epileptic is the same. For me, and these breakthrough seizures, the bad days are pure, unadulterated hell.  Conversely, the good days are great. Today was better than a good day, it was a strong day.  After nearly three weeks of getting my ass kicked by the seizure circus for days on end, only to come out of the haze, gain strength, hit about 90% before being run over by the next caravan, it was finally a strong day and I could feel it the moment that I woke up.

Due to my case being under review, I am very hesitant to say anything more and it is quite likely that I will pay for it tomorrow physically, but, it was worth it.

Sunday, August 10, 2014

And So It Goes

While the Neuro evaluator was nowhere near as caustic as the Psych evaluator, he was pretty evil in his own way.  I told him right off the bat that was in the midst of a breakthrough seizure. When I tried to explain the complicating issues [vomiting 20+ times a day, amongst many other things], he simply say, "I didn't ask you about that."  Next, he asked when my last seizure was and I stared in disbelief [dude, I told when I walked that I was having one.]  "Right now," I replied. "That's not what I asked you.  When was your last seizure." [Cue cognitive dissonance.]  "It started Sunday afternoon."  "How long did it last?" "It's happening right now.  I don't think I understand what it is that you are actually asking me, sir."  "Ok, get up on the exam table." Unsteadily, I get up and somewhat waveringly walk over to the table. "Why are you so unsteady?" "Because I am having a seizure!" [Cognitive dissonance fully deployed: JESUS H, MAN! HOW VERY MANY TIMES WITHIN 10 MINUTES MUST I REPEAT MYSELF?]

I'm not paranoid, but I am absolutely convinced that it is a tactical and strategic undermining of a person's sense of the validity regarding their situation so as not to have to pay out the money that has been paid in. I have paid in both with loyalty and integrity for 30 years.  To add insult to injury, it's not as if I want permanent disability, but given that Friday marked the end of a three back to back series of seizures, meaning that I was fully out of commission for at least 15 of the previous 20 days, how can I possibly expect anyone to hire me?  Even to work from home on a consistent basis, at this point, I'm completely unreliable.

I have what will be my first non ER / ICU Neuro exam on Thursday.  Absolutely no idea what is in store.  I suspect it may take some poking and prodding before they are able to tweak it or decide to operate.  Either way, I'm going to require heaps of physical and occupational therapy as well as a probable return to my old therapist so I can process things with her.  She'll even come to the hospital if I require extended stays.  [Plus, I make her laugh, which always helps.] Pragmatically, I have NO idea where I am supposed to find money off of which to live.  Thankfully, I have full medical through the state but that doesn't cover optical, dental, bills or other basic living expenses, for example.  It's pure madness.

I expect to be denied.  I will appeal as many times as it takes, but I'm disappointed in a system that calls itself "Social Services" chooses to be so incredibly inhumane.


On a brighter note, I finally got more than two hour stretches of sleep both Friday and last night and, my word, what a difference *that* makes.  A WORLD of difference, I'll tell you what!  I'm not quite caught up yet, but getting closer.  Even did chores today and rocked the stairs like a BOSS.  Boo YAH.  The one upside to having two either jerky evaluators or bad actors plucked off of the street posing as evaluators, is that this week's Neuro exam is causing me zero stress.

On an even brighter note, I think have helped Ben find a place to stay in the NYC area.  I know that it's a load off of his mind and, as such, is a load off of mine.  It feels good to be useful.  It feels good to have a sense of accomplishment and success, regardless of how small.

Somehow that last one overshadows all of the other crappity crapness of the week.

Monday, August 04, 2014

Evaluations: Take 1

In direct opposition to the the justice system, where you are innocent until proven guilty, the public assistance system goes from a guilty until proven innocent left swing.  It's an incredible level of constant interrogation.

"Why didn't you go to the hospital after the accident?"  Again, really?  I was in shock and had a concussion.  People don't think clearly in these states. I went straight to my safe space [read, apartment and slept.]

"Why did you stop taking your medication?"  Because the neurologist took me off of them and refused a refill. 

"When is your next appointment with him?"  Are you fucking shitting me?  NEVER.  I have a new one in queue, thankyouverymuch.

"You smell like alcohol."  You mean because I have just mouthwashed the hell out of myself, in your stinky little bathroom, to cover the absolutely delicious hummus, tomato, and avocado breakfast that I treated myself to this morning and then promptly threw back up outside of your office?  Lean in closer, dear, and you WILL smell the belch that comes from that.  Thank me later.

"Are you sure don't do street drugs?"  It may have been the slouchy hat I was wearing because my hair was wet and it was chilly this morning that threw you off, but I think I would have noticed if I was doing street drugs.  Oh, look, Hi, heroin needle!  Dafuq? I barely take an aspirin when in pain.

"You should think about drinking again and then tapering off."  I just...whaaaaa?  I was never a binger, never even a hard drinker, why should I have to taper off from something I've stepped away from?  Fucking nevermind; just go away.

I'm actually in pre-seizure stage right now due the stress of all of this, I tell her. [actually, as it turned out, I was between seizures...sort of.]  "How do you know you're entering a seizure?"  Well you saw my handwriting [which she had to get me to interpret], my walking, and how much I'm shaking: do healthy people do this? This is the beginning of a breakthrough seizure.  Make a note of it, because you aren't making it any better.

"Why don't you want to go back to the hospital?"  Have you listened to anything I have said about how terrible ICU is?  Anything?

And then came the tests.  It was sort of an exercise in humiliation.  I do understand why, I just don't like seeing the starkness of it.  I feel like I'm expanding in some ways, but I used to be super good at math, but there were math problems where my brain knew that I could stare at them for a year and the answer would not come. I wept. 

The word problems were easier, my language skills are becoming more robust. Though I still can't remember some story about a cafeteria worker in Boston. She had kids and got mugged and they hadn't eaten for days, but the police got her money.  She kept asking me to repeat the story and the only thing I could think of was "who mugs a cafeteria worker?"

There are pattern tests and it might be part of the synesthsia, but I really wanted to engage with the patterns and explore them, but she kept telling me I was wrong.  What she didn't care about is that colors now have sounds and those sounds want to make shapes of their own or that interact with the shape that I'm shown, so it quickly becomes incredibly confusing.  Pissed me off.  I wanted to yell, "What if my right isn't yours?"  The point being that whereas the math may be a hard stop in terms of regaining ground, maybe the softer skills are there to be engaged and built.  I'm not done trying

Finally, fuck the fuck off with your bitchiness, don't act like this was a choice I made, it's just a journey I need to make and your job is to help me.  So, stand up.

Lord, help me, I am trying to be strong, but some days, man, some days.

Sunday, August 03, 2014

Brighter days

For those of you who waterski, switching neurological meds is like navigating a wake for your first time and when you are switched to the wrong med, it's not unsimilar to a water faceplant where you forget to let go of the handle. For days, I was cold but hot, sweating hot.  I slept on towels because I was sweating so hard and having hallucinations.  It was truly a world of WTF.  And I still kept seizing.

Maybe I had to see how "un-me" I could be so I could truly appreciate being the me that is me.  The important thing is that for the first time in a month, I feel my own quiet calm return.  It, quite literally, feels like settling back into my skin. I may have to accept that I will be in flux with a low grade seizure, on call, for the rest of my life, but I will take that over the craziness of switching meds again.

FTR, Ben didn't leave me; I flipped the fuck out and ran like a tiger was chasing me. Also, my line of thinking made ZERO sense. Bless him for his patience. I am doing everything I can to gently repair that action. It was untrue and unfair to him as my love and to him as person.  He understands the role that medication played, but I still feel a responsibility to honour an honest apology and make amends.

Brighter days will come.  Tomorrow, I start a series of neurological, psychological, and physical evaluations / examinations.  I'm pretty terrified.  Just saying that helps.

I'm not sure if I'll ever be part of the Super Smart Society again and I don't know if I will miss the competition that comes with it, but I can build love and compassion that I never seemed to recognize the awesomeness of previously.  These, again, are actions.  Real actions that end up bearing witness and keeping together in a sense of personhood.


They switched my seizure meds and it was awful.  I do not know if it was the synesthesia, but I didn't even smell or see right the entire time.  I probably should have returned to the hospital, but that is really the worst and I cannot go back. They've since switched me back.

In the process, I was an absolute jerk to Ben.  My Ben who deserves nothing less than the best.  The best of me, I hope. [In my defense, it was due to a rolling set of seizures and anxiety / panic attacks.]

What I have come to realize is that while I am loyal to a fault, my fear of abandonment drives me to run when I sense danger.  Run hard and run fast.  Yet given a distance, I will wait with patience.  This, however, is not how relationships are built.  Commitment at a distance is not investment, it's just distance and an unproductive reaction to feeling abandoned.

Ben, if you read this, please know that you are the love of my life,  I don't really know who I was when they switched me out on my meds, but I'm back to being me.  I've had a long think on stuff and things and I feel that the good and solid stuff and things have been reflected back at me.  You are huge one of those stuffs and things.  Please come back to our place and our bed.  It's the only way that I know how to sleep proper.

Friday, August 01, 2014

Not all miles are created equal

Help me make my next one.

Remembering and pushing forward.

Here are the things that I remember.

How we melded.  How I could roll over and kisses became a certain kind of kindness that was held and enthralled. How a gasp and moan became one in the same.  I remember how your big paw could grip my small hip that said, "I've got you." I remember you whispering the same thing when I was so very ill and shaking in your arms.  I remember you kissing the base of my neck as if you expected it to be yours because it was and scooping me close to calm me down.

I remember and bring it forth.