Wednesday, July 6, 2016


Before I tell you what's been happening lately, I should tell you a bit about what happened previously. I've been, shall we say, remiss.

When last we spoke, I was in the midst of integrating the huge changes that took place in my lizard brain last year. As I said back then, integration is a lot harder to write about than epiphany, being, rather characteristically, less exciting.

In other words, this past year has been a lot of me getting used to not being hypervigilant (which looks like... me not freaking out about anything, which is... let's face it, not as interesting as me freaking out about everything, amirite?), and going to neurofeedback appointments but not having major, exciting things happen during them, and going to Dr. Oz and talking about... how little I have to talk about.

I've spared you the agony; I've been boring myself.

But I've regretted not having things to say. It's been more of a lack of certainty about where to go next with this story, I think. After the Big Bang of those releases, I had to face the Big Question: had my story come to an end?

HA HA HA!!! Oh, silly me! If only life were so neat and tidy! Or... honestly, I don't think I even mean that. Because I've missed this: this bog, this processing-on-the-screen, this writing life. I really have. 

Truth be told, if "neat and tidy" means no longer having this connection to you, this story to tell, I think I prefer a bit of a mess.

I stopped my neurofeedback treatment a couple of months ago, just shy of two years in.

This was not by choice, exactly. My practitioner, the marvelous Dr. Q, was relocating her practice to Santa Rosa, CA, where she continues to work miracles upon the hopeful public. But also, I was feeling ready for a break, just to see how I did without her. 

Sort of like taking a spin on the bike without the training wheels for the first time, just to see how far down the block you get.

I am not sure how to report the results of my experiment. On one hand, I am enjoying only going to one regular appointment per week for a goddamn change and reducing my "professional patient" status to relative nil-- for a while I was seeing Dr. Oz once and Dr. Q twice each week, in addition to the various other appointments I managed to accumulate (did I tell you I've had a "frozen shoulder" since last November? WTF?! So that's been another couple of appointments per week for physical therapy and/or Active Release from my favorite chiropractorturer, Dr. John Beall. AND there is a story about kidney stones coming that is going to chill your bones, but that can wait, because THIS! This is big news).

But anyway, yeah, I have spent the past year feeling like all I do is drag myself from one doctor to another, and I'm sick of it. So I welcomed the respite, even though neurofeedback is probably the thing that is most effective for me at this moment in my life.

Well. Okay. Not probably. As it turns out. :/

Since I stopped seeing Dr. Q at the end of April, I've had an upswing in migraines that is troubling. While undergoing neurofeedback, they had dropped to practically nothing, for me-- usually one a month, 1-3 days, very mild and controlled by OTC meds. Over the past two years, I had begun stepping out without my portable pharmacy. I had traveled on planes without triptans in my bag. It was insane, really, compared to the previous decade-and-a-half, how free I'd become.

Since Dr. Q and I parted ways, I've had a few 10-day monsters, like I was having on the regular when we first started treatment. So while we had not yet found a way to train my brain to keep that shit up on its own, we had definitely found a way to hold them at bay.

THAT SUCKS, you might say.


Although, yeah, fuck, it does suck, Jesus, throw me a bone, universe, for the love of Christ.

(Okay, since we're talking about it, I'll tell you the kidney stone story now: in the last 12 months, I have had four. FOUR. And not four little ones, four GIGANTIC ones. Two of them measured at 8mm, one of which is still stuck in my bladder because when they get that big, gravity prevents them from washing themselves out right away. Gravity. Kidney stones so big they have to deal with gravity.

So after this last one, I had my second CT scan of the year to figure out what the hell was happening, and the urologist I went to suddenly went, Wait a second, what medications are you on? and looked at my chart, and then goes, Yep, uh-huh, here it is, that's what's causing the stones, it's the Topomax, which my drug-savvy or long-memory-having readers will know is MY FUCKING MIGRAINE PROPHYLAXIS. 

If you ever doubted, friends, that I am good at keeping my balance on this tightrope above the void and staying, for the most part, positive, you would have enjoyed seeing the doctor's face the moment after he gave me this news, and received my reaction.

I burst out laughing.

I mean. I MEAN. What the fuck else can I do, at this point? And then he goes, "Well, if you can't stop taking the Topomax, we could give you another med to try to counter the effects," and I'm like, "What are the side effects of THAT?!" and he says, I kid you not, "Fatigue."

I was howling. FATIGUE! Of COURSE it's fatigue! That is just. So. PERFECT!

And while we're on the subject, why are side effects never " risk of nymphomania and slenderness?" Why not "mimics the effects of cocaine?" Why never those? Your move, Big Pharma, you jerks.)

Ahem. So. Anyway. Those things all happened. But that's not what I wanted to tell you.

What I wanted to tell you was this: before I ended my treatment with the marvelous Dr. Q, we did a final QEEG. We wanted to compare my brain now to how it was when we started, so we could see how much progress we'd made and what areas I could focus on in future work. Dr. Q has begun to do QEEGs herself in the two years since I've known her, so she performed the test and did the analysis, which means it was in a different format and not a one-to-one comparison, but also that I got different kinds of information than I got last time.

A lot of it, already knew: much has shifted, much has lessened, although much has not and I still show trouble with things like switching between tasks and keeping focus and stuff like that-- things I've always attributed to my overwhelm, but which have lingered even though the overwhelm has been greatly reduced over the past year.

And then, Dr. Q presented me with the piece of information that made everything snap into place. 

It's not exactly a surprise. I diagnosed it myself in a theoretical way in this very blog, way back in the beginning, and I faced the reality of it in these posts, back when I first started neurofeedback. It just got kind of dismissed by the guy who analyzed the previous readings and we left it alone over the past two years, but Dr. Q knew I would want to know, so she fed my data into the National Traumatic Brain Injury Database, and what came back was this:


It's official. I have/had/have had a moderate traumatic brain injury.
That's not the greatest image, I realize. And there are a million numbers on there that I don't really understand and can't tell you how to decipher. But the two graphs and the numbers at the top tell you what you need to know, and are very clear:

My brain shows an 85% probability of having suffered a moderate TBI.

As you can see from the little odometer-looking graph on the bottom of the page, I fall at the low end of the moderate range. Just above the line, in fact.

If I'd been handed a blank graph and been asked to place myself on it, that is pretty much exactly where I would have guessed.

So, how does it feel, you might be wondering, to finally have this proof? This document that confirms what I have felt and validates what I have struggled with and fought against and experienced these past 25 years?

If you clicked the links above and went back to those other posts, when I first discussed this possibility, then you know that I sort of already went through the Big Emotional Hit over it. And don't get me wrong-- it was a big one. It's a big, disturbing, world-morphing thing to think that I haven't had the brain I've thought I've had, all these years; that the challenges I've had that felt so odd, so off, really were odd, really were off. That I really have been climbing a mountain with a piano on my back all this time.

Since then though, I have found it a lot more interesting that despite the piano, I fucking climbed the shit out of that mountain anyway. There's a lot more to be said about that.

And, in fact, that explains my reaction when Dr. Q handed me that sheet of paper, and I saw my TBI finally and formally confirmed, live and in living color, for the first time.

I didn't think, Oh, my poor, damaged brain.

I didn't think, Oh, what a life I have I lost.

Call me an optimist, call me a tightrope walker, call me a denier of the void, but what came to me in that moment was the lightning-strike thought that is a dream-come-true for the person I have become-- the person I always wanted to be, accident or no:  a writer, a woman of words with a story to tell.

I thought: Hot Damn. There's my book.

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