Monday, September 26, 2016

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.

Tuesday, September 6, 2016

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.

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!


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 guardsListen


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!