Another Signpost

As I mentioned at the end of my last post, I've embarked on a new project:

I've begun the process of turning this blog into a book.

The first part was a bit more painstaking than I expected, but it had its benefits. I started by cutting and pasting every post into a single document, rereading each post as I went. I've reread individual posts many times over the years, but this was the first time I'd read the entire blog from start to finish since it began.

Here's a glimpse into the day-to-day life of a PTSD sufferer: Most of my posts were written when I was in a highly triggered state, so my brain was not recording memories the same way it normally would. As a result, I have no memory of writing most of my blog, or even coming up with most of the things that it contains. Much of my experience of it is through rediscovery-- as a reader, like you. I have to go back again and again and read words that often feel as remote as if a stranger had written them.

It's weird. I admit it. It's weird.

I also admit... and I'll tell you this because we've been together a long time, you and me... that sometimes I read a post and am removed enough from it that I can see my own writing objectively, and I think, Damn. I'm pretty good!

Of all the things in all the world I NEVER thought my extreme dissociation would bring me, I'd have to put "confidence in my writing" at the top of the list. But I will take it. Thanks, PTSD! 

_____

Anyway, after I finished getting it all into one manuscript, I couldn't resist posting the stats on Facebook to let people know what I was doing: 190,109 words; over 440 pages of image-free, 1.5-spaced writing. A lot to work with. I'm off to the races!

But then, this happened:

A few hours later, I got an IM from an old high school friend; someone I haven't spoken to in over 25 years. At first, all she said was "Are you there?" But I could see that she was typing something.

What followed was a long message from a woman in crisis. She was rarely on Facebook, but happened to be on that day and saw my post about my book and clicked on my blog to check it out.

I have tried to read your blog. I was happily enjoying my ignorance until I saw your post about a book...Your words are mine. Your experience different and the same.... I am struggling to read the rest; I'm already hiding in a closet, crying. But I am now wondering, is what I have PTSD?!

We exchanged messages for the next two hours and she told me the harrowing details of her story: trauma, both physical and emotional, one piled on another. She'd been to what sounded like multiple therapists, but not one had ever suggested that she might have PTSD. It didn't even sound like they had properly addressed her trauma: she reported feeling violated by her treatment rather than helped by it.

So many of the other details of her story were familiar: gradual, relentless, and total dissociation; being "afraid to live," feeling exhausted all the time, but going through life on autopilot and achieving a lot despite what she's been through. Feeling guilty for not living up to what she imagines are others' expectations, so isolating herself from family and old friends. The neverending cycle of fear and shame.

Make no mistake: I am not a therapist. I am not a medical professional. I only know what I've gone through myself, and what I've researched from a layman's perspective, so I can't know with any kind of authority what is going on with my friend, and I told her that. But I did what I knew to do for someone in pain reaching out for help: I made sure that she was safe and not in danger of harming herself or others. 

And then I told her my opinion: that her story sounded similar to mine in many ways and my words were clearly resonating strongly with her, so she should perhaps take that as a sign that she was on to something. I told her I thought she shouldn't read any more of my blog on her own; that it was too triggering for her. She asked me about the kind of treatment I had found and said she was interested in exploring it herself, so I told her about EMDR and directed her to the blog posts that described it, with instructions to send her husband to read them first to avoid triggering her further. We agreed to stay in touch.

A few days later, she messaged me again and told me that she told her husband everything; that she used the term 'PTSD' for the first time, and that he was supporting her in finding an EMDR therapist in her area. She has already taken steps toward her first meeting.

I asked for her permission to tell you about this conversation because I could think of no greater validation of my plan for this blog. I've always wanted the book to be a resource for people who might not otherwise know about PTSD, to understand what it is, how it might affect them or someone they know, and how it can be overcome. I want to put it out there to reach people exactly like this friend of mine, so getting her message was like another one of those universal signposts that have come so regularly along this journey, pointing me in the right direction or affirming that I am, indeed, on the correct path.

It's intimidating, this book project. I've got a lot of editing to do, then more writing, before the final product takes shape. But if I can keep doing that, helping people to make that same connection I made the first time I opened Peter Levine's Waking the Tiger and saw the previous 20 years of my life explained in the table of contents... if I can help people reach out beyond their shell of isolation and find support... if I can help people discover that there is a way out of the darkness of PTSD...

Well. That. That's worth rolling up my sleeves and getting back to work.

Thanks for reaching out, friend. Best wishes to you on your journey. It's not an easy road, but I promise you, you can get somewhere new, and better, and it's worth the effort. Because I could tell just from talking to you that, like me, you Want To Live.

You don't know it yet, but you've already started.

The Podcast

There's been lots of movement over here lately. Things are advancing on many fronts! Lots to report, people! Lots to report!

Let's get started, shall we?

First of all, a quick medical catch-up:

I told you in this post about how my daily migraine prophylaxis, Topomax, is causing me kidney stones, right? (I had another one this weekend, in fact. That brings us to five in the past 14 months, all 5-8mm in size).

Well. I went to my appointment at the Stanford Pain Management Clinic (they had a guy playing a grand piano in the lobby. Oh, Stanford!), and had a very empowered discussion with my (female) doctor about how I Would Like To Be Taken Seriously. Because I've been doing this for 20 years and I've done my research and my legwork and I know what I'm fucking talking about.

She agreed. She was cool.

Go me! \o/

She wants to try switching me to a "safer" drug (Propranolol, a beta blocker/blood pressure medication which is not exactly what I would consider the non-side effect-having safer drug she implied it would be (more on that later), but which won't cause kidney stones. So.) She also suggested a non-drug method, involving freezing the sensory nerves under the scalp that radiate upward from the occipital region at the base of the skull and from the orbital region in the eye sockets.

Behold:

The migraine tends to follow along those nerves from the base of the skull up over the top of the head to the eyebrow, slightly off to the side like this. Mine are usually on the right.

Notice where the supraorbital nerve emerges from the eye socket. This is VERY IMPORTANT in my particular case!

This has proven to be very effective, apparently. In fact, the day I was there, I had a migraine, and she was able to give me a preview by numbing the supraorbital nerve to see if it would help.

It did!

The real kicker here, though, is the reason she did it: because I told her about my car accident, and about my compound complex depressed skull fracture, the mended seam of which you can still feel if you press your finger against the ridge of my eye socket.

Where? Why, precisely where the supraorbital nerve emerges from the skull, of course!

And those occipital and distal nerves? They sit right where they could be compressed by a region compromised by improperly-healed grade-3 whiplash. 

Both areas that might be inflamed, say, during the hormonal shift of a monthly menstrual cycle, perhaps?

I put that last part together myself. I mean, migraine has all kinds of triggers, and not even doctors can reliably pinpoint the cause or reasons behind the condition. My migraines have followed the classic pattern: I started getting them as a young child (6), they were misdiagnosed as food allergies and blood sugar disorder, they disappeared when I was a teenager and then reemerged in my mid-twenties. 

They were not caused by my accident. I would have had them anyway.

But my accident created a host of powerful triggers, and I think I've just figured out how to beat some of them. Well. I shouldn't count my chickens-- we know how that goes. But I'm going to try this nerve-numbing, and if it helps, a bit of freezing. Freezing lasts longer than numbing, so they make sure the nerve angle works on you before they do too much.

The main point here: NO MEDS. I am slowly but surely getting the medication out of my system. I'm ramping up on Propranolol so I can ramp off of Topomax, but if the nerve thing works, I'm kicking the Propranolol too. I'm checking the boxes. One down, two to go. Get this stuff out of me, so I can just be myself again.

_____

But enough about that.

A few weeks ago, Carol Miller, who I told you about in my last post, came to my house and we recorded ourselves in conversation about our storied pasts for her latest podcast for Rarebird Radio.

It was pretty amazing! We had so much to talk about that we had to reign ourselves in, and we've decided to turn our conversation into a series (and perhaps even more than that... stay tuned, loyal readers. I told you this was the start of something big, and I meant it!)

So here, I'll borrow the introduction from Carol's blog, along with the picture we took of ourselves sitting on my family room couch in front of my old guitar, and then you can go listen to our chat and tell us what you think!

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Podcast: Carol E. Miller, author of the memoir Every Moment of a Fall and Kate Bassford Baker, author of the blog The Girl Who Lived, discuss their near-fatal crash experiences, EMDR and releasing traumas the body closely guards. Listen

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What would you like to hear more about? What topics did we miss? What questions do you have that you'd like answered? Leave them in the comments, and we will do our best to address everything in future conversations!


PS: in my next post, I'll tell you about another little something that has begun around here: I have finally started the process of turning this blog into a book! More to come!

An Unexpected Bond

I told you a few weeks ago that I had recently met a woman through this blog who has had similar experiences to me: a deadly accident in her teen years, two decades of confusion and paralysis, and a life-changing course of therapy at 40 that brought healing to a wound she did not know was still open and causing her pain and distress.

Before I go any further, allow me to introduce her to you:

Carol-E-Miller.com

This is Carol E. Miller. When she was 16 years old, she survived a plane crash that severely injured her mother and step-father (the pilot), and killed her 12-year old sister, Nancy. 

Carol's memoir, Every Moment of a Fall, recounts the story of the crash, the aftermath, and what happened to Carol in the years that followed. It's a story of guilt and shame and isolation and hope and tenacity and redemption. And a lot of therapy.

Sound familiar? I thought so, too. And so did Carol, when she stumbled across my blog a few months ago and read the whole thing, start to finish. That's why she reached out to me, and asked if she could interview me for a podcast series she's creating for her publisher.

It is also, I think, why she and I felt such a powerful and uncanny connection a few days later, when I went to a reading she did at a bookstore in San Francisco and introduced myself. 

Listening to Carol tell her story was one of the most surreal experiences of my life. Over the years, I have met a handful of people who have been in serious accidents. Many more who have experienced other trauma. And I've met lots of people who have undergone therapy. But I have never, not once, met someone who has attempted the same thing I have: to overcome the PTSD monster.

She talks about it differently than I do, and some of our details vary, but for Carol and me, the chapter headings of our lives are essentially identical, and our trajectories are as well. That in itself is astonishing enough.

But there was also, quite simply, the experience of feeling a sudden and powerful connection with a woman I'd never met before who had been through what I had been through. That was an unexpectedly pleasant surprise. It would never have occurred to me to seek out such a person or connection-- it was something I didn't know was missing.

It was, though.

The other thing about Carol is that she is warm and funny and we clicked instantly and deeply, in a way I seldom do with people, introvert that I am. There is just this electric recognition between us, and the feeling that we have more to talk about than we could possibly accomplish in the time we have.

It is terribly exciting.

So tomorrow, she is coming to my house (she's local!) and we are going to record our podcast. We've already realized that we could talk for hours about shame alone, so I don't know how we're going to fit everything we'd like to discuss into a 40-minute session, but we're going to give it a go. I'm really looking forward to it. I'll link to it here when it's posted.

In the meantime, I hope you will take a look at Carol's blog, and that you'll buy and read her book. It's a riveting read; I ended up reading the whole thing in one sitting because I couldn't put it down! She has been through unimaginable trauma and come out the other side. If you're drawn to my story, you will also find resonance in Carol's.

And I dare you to get through the epilogue without crying tears of joy.



      

Proof

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.

THAT MEANS IT CAN BE DONE, I will reply.

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:

PROOF:

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.

Catching Up With (no longer) Depressed Mode

Bonus points if today's post title makes you smile and takes you back your high school days of mix tapes and High Hair.

I've had a few drafts going for a while now but they have all been out-lived (OUT-LIVED! I SAID IT!), so I'm just going to scrap them and start anew and catch you up on what's been going on with this strange process of integration.

Right after I do this:

WELCOME, ESALEN COMRADES! \o/

My regular readers will remember my trip to Writer's Camp at the Esalen Institute in Big Sur, California last summer, and the world-shifting effect it had on me.

Last week's trip was no different. I had a spectacular time, and reclaimed the amazing community of writer friends I tentatively began there last year, and this time, I'm keeping them. They are mine now. 

And this year, I spoke up a bit more, and I told them about my work and what I've done with this blog, and I've invited them here. 

So, before we proceed any further...

IF YOU ARE NEW TO THIS BLOG:

1. You're going to want to start at the beginning. It's a linear narrative, this story, so it's not going to make much sense to start here at the end and go backwards, or to pick spots out in the middle and try to find your way. I linked the first post in the first sentence of this item and I'll link it again RIGHT HERE. 

(Pro tip: if you go from the link above and read to the bottom of the post, down below you'll see a link for "Newer Post" which will take you directly to the next post, with no scrolling or searching required-- this is the easiest way to do it!)

Start there. Bon voyage. I'm told it's a decent read. There's thrills and chills, blood and guts, sex and drugs, discovery and enlightenment, and even... spoiler alert... a happy ending or two.

2. Please comment, if you feel moved to do so! Don't worry if it's an old post-- I want to turn this thing into a book and your thinky-writey brains are just what I need. You are TOTALLY THE DROIDS I AM LOOKING FOR.

3. THANK YOU for stopping by! I hope you find it worth your while. I try to subscribe to Pam Houston's rule: "Never waste the reader's time."

Okay, so...

Imma let everyone get caught up, since I've been out of the blog game for many months now, but I will leave you with these topics of my next few posts so you know what's in store for you in the next couple of weeks:

1. A report on this year's Esalen adventure

2. An account of the email I received from a stranger three weeks ago, telling me she'd read my blog and was moved by my experiences because she had had similar ones, since she had survived a plane crash when she was 16 and undergone EMDR therapy when she was 40 and would I be interested in letting her interview me for a podcast her publisher wanted her to do to help market her recent memoir? OH YEAH THAT HAPPENED AND WE ARE GOING TO DISCUSS THE SHIT OUT OF IT HERE.

3. And also: THAT PODCAST IS HAPPENING!

4. And also: I suspect I will have a guest blog post by a plane crash-survivor coming up at some point because OMG she is RAD.

5. In neurofeedback news, I had another QEEG and ladies and gentlemen, we have confirmation of something BIG BIG BIG that you may or may not be surprised to learn.

Integration has gone well, this last year, and the boring part is, I guess, kind of over. Now we dive in again. Time to move. Time to push. Time to see what this newly-integrated brain can do. 

As it has in the past, when I've strayed or gotten lost for too long, the path has come knocking again. I find myself back on my feet, headed in a direction I cannot deny is the right one. Other writers, other survivors, are literally reaching out to me from the void and saying, "Here we are, where have you been, what's taking you so long?"

So it's clearly time to shake the dust off my feet and get back to this blog and write down what is happening to me on this journey.

Time to get going. Time to move. 

Time to live!