Thursday, July 03, 2014

Turning the bend

The other night I woke up starting to slip into seizure mode.  I did my breathing exercises.  I meditated.  I took Valerian and Passionflower extracts, but I could feel my heart continue to increase and the feedback loop of anxiety feeding into higher anxiety levels was working against me.  I started panicking about having to return to the hospital. So, I tried a different angle: a little over a year ago, I was given a prescription for Xanax. I found the bottle and took a quarter dose.  Within an hour, I fully stabilized.  A little on the sleepy side, but the shaking had stopped, as had the jerking, and I never reached the point where I vomit incessantly for days on end.

Though feeling isolated and at times bored to tears, I've returned to writing because I actually have the time, having a social presence here in the BA is vital to job sourcing, and it helps rebuild those synaptic connections that get blown out with each seizure. Everyone at the hospital could see how hard it was for me to communicate when I was first admitted. Ben as well, when he was here, he not only saw that side, but pretty much had to help me relearn to walk once I'd stabilized. 

However, not having the pressure of trying to save the world via Excel spreadsheets and high level babysitting has allowed me to revisit constructs that have been in place since I was a child. I've pondered principles versus pragmatism. I counted how many Xanax pills I have had for over a year. The prescription was for 42. I have 17 and 3/4 left.  In fact, I'd forgotten I even had them until fear of being back in the ICU launched that memory. Literally, having now done that math I finally understood that I am not my mother and while I have forgiven her for her actions, I need not be defined by her actions or her personhood. I am not an addict or an alcoholic, I am perfectly capable of clear self regulation and have strong judgment making skills.

Years of poor conditioning / education *especially* through meetings for children of alcoholics / addicts told me that I would always live on a slippery slope with an unbeatable genetic predisposition for addiction and alcoholism, that it was likely only a matter of time, and that I somehow drew the short straw so could not expect anything but being denied the joy of a full life.  All in a "sucks to be you, but get used to it, kid" kind of way. This is patently not true as regards drugs, alcohol, risk taking, or sport fucking the entire city.  I do accept that this could have translated itself into an OCD like need for order, routine, and an ability to hyperfocus on projects to the point where 6 or 8 hours later, I realize that I have a stomachache and that stomachache is my bladder screaming at me because I need to pee.  Subsequently, I have all sorts of alarms on my phone right now to pull me out of my "zone".  It's quite comical, actually.

What strikes me on one level is that early training sticks. I was taught I would be a failure because of my mother's struggles.  I haven't sought proper medical care, because OMGWTF, I might become an addict because I've been prescribed a narcotic!  But the weirdo horror film is over, the lights just came up and the end result is that things are wobbly, but not because of poor decision making on my part.  Life just happens and it happened.  I just need to handle it instead of running from it.

This will remain something to be managed and I respect my limitations, because "SPLAT!" rarely ends well, but make no mistake, this is NOT the end game.  Case in point: medication, moderation, and baby steps are all good things.  Most importantly, they are nothing of which to be ashamed.  I actually can manage this shit and deserve every avenue of assistance in order to do so.  I've paid into the bucket for over 30 years, I'm simply here to make a withdrawal on my decades of deposit.  [As a sidenote, regardless of how inspiring the GoPro craze is right now, I won't be rock climbing, BASE jumping, or riding a dirt bike down the side of a mountain so I cannot go fully inspiration with soundtracks and all.  Love the vids though!]

I've read so many comments and threads on epilepsy and TBI that another turning point has become realizing that if Ben had a condition, I would be at his side ASAP and as much of an aspect of his support system without hesitation.  My condition need not define me, it's just another layer added to the complex creature that I am and always will be. Though I anticipate obstacles, I think you find what you want to see and when you seek solutions and authenticity, more often than not, you find just that.  When you don't, you find new lessons to ponder and learn.

I stood in line for one type of county assistance for an hour and a half today and it was tough.  Not because I felt disdain, but because no 4 year old will ever respond the question of "what do you want to be when you grow up?" with "destitute, malnourished, largely toothless, and ignored by the sources in society who could change that in a heartbeat if they only made that choice by what would register as an accounting error in the interest column of their most recent financial report."  But the thing is that this once 4 year old wants to be recognized as a valued human today while being presented with opportunities. I just wanted to hug everyone in line and behind those desks and counters and say "hard is hard, but keep on keeping on; we're counting on you."

I have zero intent on trying create a case for permanent disability, but recovery takes time. I want to work, I can do some things right now, but not always with consistency and I do think that I will require a strict regime of both physical and occupational therapy to reach and maintain a fully functioning level, because, you know, growing a new brain takes some time!

Finally, I ordered a medical alert bracelet today and it honestly made me so happy. No more hiding. No more denial.  No more deflection.  I have done so much research.  It made me happy, because I can feel safer.  I don't always want a chaperone in case I seize, but I do want people who glare when I sit in the disabled section, suck their teeth in judgment, or look away in disrespect when I take too long or seem confused because I'm entering or exiting a seizure state or just fall and go apeshit on the floor to understand the situation.

Funnily enough, and not that I recommend this course of action, I had to have not one, but two, TBIs to get a new brain and get to see things from a new perspective. Even more funny, I remember a friend's mom catching my friend's big brother in a lie and issuing the following warning, "Do not lie to me, boy, because I will slap the stupid right out of you."  Maybe that's what the universe did.

I have thought a very great deal about this and, well, my life, my story, is the only one I get to write.  So let's get down to the business of writing it properly.

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