Tuesday, September 23, 2014

#GirlArmy

Well.

It's been quite the whirlwind around here these past couple of weeks, so you'll have to forgive my lack of posting.

My PTSD has been challenged in some interesting ways, and I (well, the Wise Adult part of me) has risen to the challenge in a way I wouldn't have thought myself capable.

We are definitely talking about new territory here, people.

But I get ahead of myself.

Rewind.  
_____


Two and a half weeks ago:

1. KINDERGARTEN.

My sweet monkeys.
We got them off to their first day of big-girl school without a hitch. They're in different classrooms, as I mentioned last time, which I thought might cause a bit of a fuss at some point, but apparently we'd built it into their expectations so seamlessly that they didn't even blink.

My husband was here to walk to school with us on the first day and share the whole experience, which was wonderful for him and I'm so grateful he was able to do it, because...

2. BON VOYAGE, POPS.

Later that evening, the girls had to say goodbye to their daddy as he left for London, duration To Be Determined.

He's still there, and has another month to go. He's terribly homesick, poor thing-- he hates to be away from the family and London is really, really far away. But, as you may recall, I leave next week for a week-long visit! **

Even better: my husband is such a world-class badass at his job that his company is paying for my trip to thank him for saving their project!

He's also going to be able to take a couple of days off while I'm there, so we'll get some extra time to hang out in London together.

I still intend to write you a post while I'm there. Watch for me!
_____

So, husband gone, new schedule with kids, all of which tend to tax me quite a bit under normal circumstances with all the details to track and things to remember and nonstop action and little time to decompress.

The girls had shortened days for the first two weeks, so were only at school for 3 hours each morning, which is not enough time to get more than one significant thing done. I squeezed a couple of neuro appointments in, some grocery shopping, that sort of thing, and just tried to keep myself focused.

I don't think I've been able to express how difficult normal things like this can be for me, especially when it's all on my shoulders. I feel easily overwhelmed. The fear of losing the threads makes me so anxious that I actually begin to lose them. It's a struggle to feel like I know what I'm doing. Which is humiliating. Which causes more anxiety. Which makes it hard to sleep. Which makes me feel overwhelmed, and I lose threads. 

Vicious cycle.

So, there was that. When that happens, it can become a bit of a slog; just trying to make it through to the girls' bedtime, when I can finally take a moment to recharge. Survive another day. Survive another day.

But a few days after my husband left, something pretty profound and awful and strangely powerful happened that... well, that changed some things. Mostly all for the better, I'd say, although mostly in very difficult ways.
_____

A very dear friend of mine-- I'll call her "Hope," which, although it's not her name, captures her tirelessly positive, tenacious, boundless spirit perfectly-- has been struggling with a crisis with her husband's mental illness for the past several months, and it has been very difficult for all of them, including their four daughters, aged 3 - 15.

They moved to the Bay Area about a year and a half ago, putting us in close proximity to each other for the first time in over 20 years, and we were thrilled to be back in each others' daily lives, especially now that we have our daughters (officially termed "The Girl Army") to raise together.

But since their arrival, Hope's husband began to spiral downward into his illness. I don't have his permission to write about his diagnoses, so I won't. I will say, however, that this crisis began with his attempted suicide last May.

Since then, their family has been through a firestorm of suffering. The girls are, variously, confused, angry, fearful, sad. Hope has been absolutely heroic in her efforts to keep things consistent for them, to support her husband in finding help-- although his illness prevents him from acknowledging that he needs it to the extent that he does-- and to keep the family afloat amid what has been nothing short of chaos.

Over the summer, tensions escalated. Hope's husband has never been physically violent, but the weekend my husband left for London, his moods escalated to the point that Hope felt unsafe in her home for the first time in her marriage, and she called me at 10 o'clock on a Saturday night and asked the question I'd already told her she never had to ask:

Can we come?

Come. I told her. Come now. Grab what you need for tonight and just come here. You will all be safe here.

And so, in the dark on a summer night, the Girl Army arrived at my house. 

It was a heartbreaking moment: the unspoken acknowledgement that whatever happened next, that night marked the end of something. Those girls and their mother were facing a new truth, and it was painful and frightening and sad.

It was so hard to know what to do. I blew up air mattresses and they squeezed them all into the guest room, covering every inch of the floor, and all five of them slept in there even though there was plenty of room for them elsewhere in the house, unable as they were to be out of arms' reach of each other.

Hope and I stayed up talking late into the night. In her astonishing, inspiring way, she shed a couple of tears, made a few plans, and then found a way to laugh, and found gratitude and... well... hope for the choice she'd made,  and went to bed prepared to be strong for her daughters in the morning.

We didn't know it then, but that night also marked the beginning of something. I've found a great deal of gratitude for it, myself.

I'll tell you about it in my next post... from London!



** This post was delayed. So I'm here now. IN LONDON. Another post to follow shortly!

Saturday, August 23, 2014

London Calling

I don't have an insightful update today because I have had a terrible cold for TWO WEEKS NOW and all the cold medicine is skewing my neurofeedback results. 

By that, I mean that I have been too jacked up to notice much of anything useful going on. Ugh.

I've had the worst head congestion ever, though, which triggers my claustrophobia. So that's nice. O.o
_____

General malaise aside, my daughters are starting kindergarten on Monday, which is a pretty monumental event. We are excited and incredulous, mostly.  It doesn't seem possible that the day has arrived.

They will be in different classrooms, which is the school's standard operating procedure for twins and which I had finally decided to choose, myself. My girls are identical and one tends to be the spokeswoman for the team and the caretaker for her sister, so to both prevent people from treating them as a single entity and to allow the girls to develop some autonomy away from each other, we want them split up.

I actually think the caretaker is going to have a harder time with this, at first, than her sister will. She's going to be so worried! She's a lot more deliberate about her role in this dynamic than her sister, who's a bit of a free spirit.

It will be so interesting to see how they grow this year, and to hear back from their teachers, who will be the first people in my daughters' lives to form relationships with them as individuals, without the immediate context of their twinship.

SHERLOCK IS FASCINATED BY THIS!!!

Expect reports. And perhaps the occasional spreadsheet.
_____

One more thing happening this week: my husband is leaving for London on business and will be there quite a lot over the next couple of months. He's got a high-profile project that requires his particular brand of badassery, and he gets to go to the UK to do it. 

I say "gets to." Travel is actually hard on him-- he doesn't love it; he certainly doesn't get to enjoy it much when he's going for business, because he's working all day instead of seeing the sights.

But this time, he's staying for a while, over a few weekends and in an apartment instead of a hotel, and he'll get some time to see some things and enjoy himself a bit. And since he's doing THAT, it seemed like a good opportunity to try to pull a few strings and arrange a rendezvous.

That's right. London calling!

So chances are high that I will be heading to London for a week very soon! I'm hoping to have the arrangements settled by next weekend. My parents have offered to come and hang out with the girls while I'm gone, and since my mom just retired from teaching for 25 years, I have every confidence that a few more days of elementary school scheduling will be a no-brainer for her.

The girls seem unperturbed by this plan. They've informed me that they're fine with skyping. I've informed them that I will scout out all the cool places that we will go together, next time. 

They remain skeptical. Smart kids. Ha ha.

I've spent a good bit of time in London, myself, and seen all the touristy stuff already, and I'll be on my own for several days, so I'm looking forward to some solo wandering. 

I think I'll spend my time in the West End. Covent Garden. Soho. New goal: to write a blog post from a Covent Garden cafe whilst sipping blessedly English tea. My mouth is watering already.

Yes. That is what I will do.

Well.

With one little side-trip, of course, to one touristy place I HAVEN'T seen in London, and one I can hardly skip now, considering its relevance. I mean, really.

I shall, of course, toodle on over to Baker Street at my earliest convenience, and visit the Sherlock Holmes museum.

Saturday, August 16, 2014

I Forget Sometimes

It looks like a lot of you stopped by to watch that polar bear video last week, which is great. What did you think of it? 

So many of you who read this blog come here because you've either had an experience yourselves that makes something in my story resonate with you, or you know someone who has and reading about what I'm going through sheds light on what your loved one might be experiencing.

Does Peter Levine's trauma theory and the PTSD perpetual motion machine jibe with what you see (or feel) in your daily life?

Perhaps more interestingly, have you heard of any other theories that resonate?

I admit, this one clicked with me and I stopped looking. I got a physiological, neurological context that explained the emotional impact, and I was sold.

Well. I wouldn't say "stopped looking." I looked. But all of the other things I saw talked about how to work on current behavior and thought patterns, and not about causes.

For example, there are a lot of motivational speakers and others out there who talk about the way to combat PTSD: mindfulness; meditation; cognitive behavior therapy to challenge and correct negative thought patterns; art therapy to revive your creativity and connection with your emotions; connecting with others as a way to keep yourself centered in the world and prevent yourself from retreating into oblivion.

All of those things are true, by the way.

But all of them are methods for how. None of them explain why.

For me, the hows don't work without the whys.

There is something so comforting in feeling, at my core, like nothing more than a primal, instinctive mammal who was just following a biological imperative.

There's no value judgement in that, you know?

It's such an efficient, effective way to destigmatize the reaction.

I want that for people. A destigmatized view of the ways their brains and bodies respond to cope with danger. 

And a destigmatized view of the way other people's brains and bodies respond to cope with danger.
_____

Robin Williams committed suicide this week.

It was a terrible thing to hear, even though I never knew Robin Williams as a person. I had a few close brushes-- he lived locally, was a friend-of-a-friend a few times over. I saw him once or twice at local shows.  I enjoyed hearing the "real" stories about him-- that he rode his bike around the City, that he dropped in at the SF library occasionally and performed impromptu storytime readings for the kids there, that he showed up at open mics in tiny clubs to try out material, that he was just a nice, regular guy.

I believe that. I like that.

But I have to say, the biggest shock for me, this week, was not that he killed himself, as awful as it was.

It was that so many people, the world over, seemed to think of him as such a happy, joyful guy.

I don't know who they were watching all those years, but it wasn't the guy I was watching.

I found his fast-riffing comedy excruciating, mainly because he seemed so uncomfortable; so pained; so terribly desperate to distract from himself. To me, he always seemed like a guy about to scream.

I loved him, though, in his straight roles. He had a depth to him that was so affecting when he allowed it to show.

And in his one-one-one interviews, whether he was talking about a film or about addiction or depression or talking about meeting Koko the gorilla (my personal lifelong dream**), I loved his calm, and the quiet kindness in his eyes.

The conversations about depression the Robin's death has raised are important and necessary, but they are also frustrating and frightening for those of us who have been in the game for a while. People don't know enough about mental illness. And many of them are quick to cast judgement upon those who suffer, which makes it that much harder for information to spread and for sufferers to get the help they need.

Anyway. You're here. You know how I feel about this stuff. This week was just an uncomfortable reminder of how very far we are from the goal.

Depression is, like, entry-level stuff, as far as mental illness goes. I don't mean to make light of depression in any way by saying that. The condition itself is nothing to make light of. As you know, I suffer from it myself. 

What I mean is: it's the most prevalent, the most easily-identified and treated. It's everywhere. As far as outsider exposure to mental illness, this is the one they're most likely to encounter. 

And yet it's still so far from understood, and so far from accepted.

I forget sometimes.

I'm over here trying to figure out how to bring more exposure and acceptance to PTSD-- something that's a few rungs up the ladder if people don't even understand depression in their fellow citizens-- or in themselves-- yet.

I guess I can only hope that by writing this blog, I am doing my part to bring down the walls around mental illness and shine a light on it so that more people can understand what it is, how it can happen, and what it's like for people who struggle with it every day.

We've got a lot of work to do.

http://www.nami.org/

http://strengthofus.org/

http://www.suicidepreventionlifeline.org/

_____




**Meeting Koko the Gorilla is, in fact, a lifelong dream of mine. I grew up idolizing Jane Goodall and wanting to teach chimpanzees to communicate in sign. I once applied for a job writing science journal articles at The Gorilla Foundation, the compound in Woodside, CA, where Koko lives. The job, like all jobs at the Gorilla Foundation, would have included several hours per week of "gorilla-sitting." OMG.

I had a freshly-minted Master's degree in writing. My cover letter made my proofreader cry. I was so ready, you guys.

I did not get the job. Not even a "thanks, but no thanks." Moreover, Koko did not personally respond to me in sign, via video, telling me how disappointed she was at the poor choices of the bureaucracy that surrounded her.

Whatever. The commute would have sucked anyway.

Saturday, August 9, 2014

Cold Fire: A Demonstration

Last week's post didn't happen because I was on an actual vacation-y vacation with my family!

And by that, I mean my entire family-- we and my parents and my three sisters and their husbands and kids all gathered at the home of the parents of one of my brothers-in-law (do the math... I'll wait), which happens to be only an hour from where I live. 

Although I have lived in the San Francisco Bay area for 20 years, I grew up in Southern California and my family has remained there, which has meant that seeing them over the last two decades has required a flight or a 7 to 9-hour drive. 

And until recently, I was the only outlier, so it's always been me to do the long drive for Christmas and other major family events.

However.

The balance has shifted recently. My youngest sister, she of relative newlywed fame, has boggled my mind by moving 1/2 A MILE AWAY FROM ME in my adored little town on the Bay, where her husband actually went to high school, and now we sisters are evenly split between North and South, and for the first time in my adult life, I get to live near one of my siblings.

My bro-in-law's dad and step-mom live on Delta not far from here, and (in their questionable wisdom) invited us all for an extended summer weekend getaway, so we went and slept all over their house and on their boats and spent five days splashing around and water skiing and jumping on floating trampolines and having impromptu late-night dance parties and acoustic guitar sing-alongs and cocktail-of-the-day competitions and cooking and laughing and sunning and just having a great time together.


See what I mean?! Me and the sisters, along with my twins and a nephew. Not pictured: another nephew, a niece, four husbands, two grandparents, two parents-in-law, two dogs, a parrot, a few boats, and a trampoline. And a lot of beer.

Parents of formerly-small children may recognize my astonishment at having had... you know... a good time on vacation. 

Ours are about to start kindergarten and until now, time away from home has mostly been pretty much the same as time at home, except more difficult because we don't have all our stuff with us.

But apparently, they have passed some sort of magical milestone, because they are now officially Chicks Who Can Hang. They had a ball. We had a ball watching them have a ball. It was an actual, mutually enjoyable experience, instead of 24/7 twin maintenance. 

We got to relax! 

I think they're finally ready to start having some real traveling fun with us!

Next stop: PARIS! ;)
_____


Anyway, back to the issue at hand.

The cold fire is still going strong.

I only had one neuro session last week, and none this week-- Dr. Q is on vacation herself-- but even without the consistent updates, I'm still getting the off-gassing energy release whenever I think or talk or write about my therapy or anything related.

I keep thinking about that whirling ball of white, electric filament fibers in the back of my skull: the image that now represents, to me, the endless momentum of my PTSD machine, and how maybe, just maybe, the energy created by that momentum is getting more and more opportunities to escape-- evaporate through my skin instead of spin itself into destructive chaos in my head.

I don't know if I've ever explained the "trauma energy" thing this way before, but this is how I've always meant it. Not "energy" in a metaphysical, hippie, "I can see your aura" kind way, but "energy" in a real, literal, muscles-charged-with-tension-because-I-am-poised-and-ready-for-attack kind of way.

This is why PTSD is so exhausting-- it's not primarily an emotional state, it's a physical one, and the emotional turmoil springs from the distress of being constantly spurred into in this physically taxing and stressful state.

Need more evidence that this is a horrible way to live? Take a look at the reports of what they do to the prisoners at Guantanamo Bay. Maintaining constant conditions of elevated threat and physical stress is a known weapon of malicious intent. 

If someone were standing next to me, doing to my body what it is doing to itself, it would be called torture in the extreme.

Or, you know, "interrogation." Whatever. Comme ci, comme ├ža.

So this cold fire thing is a great development, is what I'm saying. The more the better. As we've always known. But since it's happening more and more with the neurofeedback, I've been thinking about it more and talking about it more, and I thought I'd bring it up with you guys again because Dr. Oz told me about something the other night that I thought you might want to see.

I sure as hell wanted to see it.

If you've read this blog from the beginning, then you may remember my "Trauma Theory" post, back in November of 2011, where I talked about Peter Levine's findings that animals discharge stored energy immediately following a traumatic event, unlike humans, whose natural processes are generally disrupted by our cognitive processes and by rescue efforts, inhibiting our ability to complete the fight-or-flight response instinctively.

Releasing the trauma is what allows the lizard brain's hypervigilance switch to get flipped back into the "off" position until it's needed again.

Hypervigilance Switch "off" = Go back to your normal life. 

Hypervigilance Switch "on" = Welcome to PTSD! Hang on to your hats and glasses, kids! It's gonna be a bumpy ride!

It turns out that there's VIDEO of this natural, instinctive trauma energy release happening in real time, with a polar bear, and it is AMAZING. I'm posting it below so you can see it. 

HOWEVER:

Trigger warning: the first two minutes of this video are of the polar bear, with fascinating and trigger-free commentary. OMG, OMG, AMAZING!

At about 2:02 (there is plenty of warning, no surprises), the video moves on to include footage of a woman who has been the victim of sexual assault going through a similar process in a Somatic Experiencing session.

I can't bring myself to watch the last six minutes of the video to tell you how disturbing or triggering it may be. I think that in itself counts as disturbing and triggering, yeah?

I can tell you this:

The woman is in a safe, supported, supervised environment and is working closely with her therapist to achieve this result. 

I can also tell you that I always wished I'd have this happen to me, even though I can't watch it happen to someone else. Scary as it is, I long for the catharsis of letting it all go at once.

But anyway. Caveat made. The first two minutes, at least, are MUST-SEE viewing for readers of this blog. 

What you see this polar bear doing, friends, is saving my life, in a roundabout way.

WATCH:



UPDATE: if you aren't seeing the video from your Apple or mobile device, here's the link: https://www.youtube.com/watch?v=cZRiLGTtqjg

WHOA, RIGHT??!!

So I think my cold fire is the super slow-motion version of what that polar bear is doing. He gets his all out at once, right when it happens, before the perpetual motion machine gets installed and generates a constant stream of that poisonous energy for his body to battle against forever and ever, and BOOM, he's done.

Mine is coming out now, maybe as it's created, or maybe what's left from last week or last month or last year in the overly-tense fibers of the exhausted muscles of my body, constantly being stocked and restocked with tension they don't need or want or use except to put my bones at war with themselves; make me too tired to sleep, too sore to move; old before my time.

Yeah, this cold fire is a good thing. 

When it first started and Dr. Oz told me what it was, I thought I'd run out of it before long. 

I didn't quite understand the PTSD-as-momentum-generator thing yet at the time. I thought I was feeling the energy of the accident-- the initial trauma, stored in my body from all those years ago-- finally being released into the air.

Now I get it. Oh, do I. It's still happening, in there. The trauma, the creation of energy, the tension, the fight, the flight, the freeze in the headlights... it's all still happening right this moment as urgently as it was on that night in February, 1991.

I've been disheartened, at times-- even very recently-- that despite all the work I've done, some things still seem just as far away as they always have.

Turning off that goddamned hypervigilance switch is one of them.

But watch that polar bear again. Did you see him? Did you see when it happened for him?
Not when he started to release that energy. Not while he was doing it.

Nope: he lays there and thrashes and shakes until it's all worked its way out, until it's ALL GONE, and then and only then does he stop-- so suddenly! so dramatically!-- and take that huge, fortifying, life-affirming, lung-filling breath of what must be the freshest air on Earth.

And then another. 

And then, work done, lungs free, breathing easy, he finally, finally gets to rest.

OMG.

Holy shit, how fucking cool is that??!!

<gobsmacked>

Jesus. This is all hitting me right now, as I'm typing this. I have to watch that again.
  
Hey, listen.

Pretend I wrote an awesome, profound, mic-dropper of a closing line here, will you? I gotta go.

I've got a date with a polar bear.


Saturday, July 26, 2014

Ghost-Raising

Well, I've had another week to talk myself out of believing that this body stuff-- and the additional aches and pains that happened after Tuesday's session-- were actually a) related to the neurofeedback and b) connected to my car accident.

I am a skeptic, as you know, and this stuff all starts to sound a little ridiculous after a while, even to me. I mean, how is it possible that sitting in a room and staring at a computer screen can make my extremities fall asleep for days, or that this feeling can some how signal that I am accessing 23-year old traumatic memories?

<she stomps her feet and kicks a few things in defiance>

Well.

After neuro on Tuesday, I was having even more body pain-- this time, in the head and neck region. My neck was incredibly uncomfortable, and I was having a strange kind of headache-- not a migraine, and not an internal headache, but one that felt like the thin layer of skin and muscle around the outside of my skull was sore with tension.

Who knew that after all these years, even I could have a new kind of headache?!

So when I went back on Thursday, I told Dr. Q about all of this, and we tried a new protocol.

We'd been expected to try something new on Thursday anyway, because Dr. Q was consulting with a second person this week on my case: a woman with an RN background who has been in the field of neurofeedback for 21 years. She turned out to be a great teacher who passed along her rationale to Dr. Q, who passed it along to me.

And you know what that means...

Pictures! ;)
_____


You'll dig this, actually-- it makes perfect sense.

Remember the picture of all that beta and high beta in my Q results? 




Basically, all that yellow, orange, and red = tension. And a lot of it is coming from the actual, internal brain activity, but there is also plenty of it being picked up from around the edges-- along the skull-- that is coming from the muscles themselves.

So the neurofeedback session works to relax those frequencies, but then afterward, sometimes, muscles and structures that aren't used to being relaxed will overcompensate by kicking into overdrive and clenching back up again even harder.

Or hiking those shoulders back up to their customary place under the earlobes.

Or slamming back down on that imaginary brake pedal.

See: me after a massage. For example.
______

So, that satisfies me that it's connected to the neuro. It certainly makes sense. It fits with every theory we've been working under. Every new development has coincided with a treatment session. 

I'm convinced.

On to question number two: what makes me think it's related to the car accident?

Well...

I think we're revisiting the injury sites. The physical injury sites. Even the ones I've forgotten about. 

It's like a ghost-walk down repressed-memory lane.
  • First there was the shooting nerve pain in my arm and knee, which was ambiguous at first but is less so now. 
    • I don't think about my knees being injury sites from the accident so much, but they were: they were embedded 2-inches deep into the steel frame of the car. I've never regained feeling in either kneecap, but the right one is the worst. I suppose it was one of the worst injuries on my body, although I didn't experience it as such at the time.
    • Arm: same thing. My right arm was my shifting arm, my steering arm. That night, I jerked the wheel hard, once to the right, and then a last-ditch effort back to the left.. My right shoulder would have taken the brunt of that effort. There was an injury there.
  • Then there was the circulation problem in my arms and legs. That has always been related to my car accident. I still have that problem, although to a smaller degree now. The extreme to which is was happening after last week's neuro session was something I experienced in the months immediately following the accident and was an instant, visceral connection of body and emotional memory.
  • Next was the terrible aching in my neck. It was so uncomfortable that it hurt to hold my head up.
    • Grade 3 whiplash was one of the most major injuries from the accident. For months after the accident, I could not hold my head up with my neck muscles alone. It would just fall to the side, as if my neck were made of string.
So there's all of that. But here's the kicker:

As these pains calm down, they morph slowly into the more-familiar "cold fire," "off-gassing" feeling that I've been getting throughout the last few years of therapy with Dr. Oz-- the stuff that happens at moments of breakthrough, moments of release of the old trauma and embrace of the new order.

For the past few days, I'm not getting pain anymore, I'm getting cold fire, constantly. And it's concentrating at spots of injury: 

... walking on icy feet up the back of my neck ...

... circling up my right arm from elbow to shoulder ...

... clustering at the inside edge of my right kneecap...

... shivering up my thighs to dance in a cool, shimmering, radiant band across the front of my hips, where there once sat a deep, black bruise, 18-inches long and 3-inches tall, from the seatbelt that saved my life. 

And weirder than that... it's happening on demand. It calms down for a while, but starts back up again whenever I think, speak, or write about it.

Right now, it's fired up and radiating like crazy. 
_____

I believe it. My body certainly does. 

Once again, I have to just trust that something is happening here, and just settle back and watch the show. This tactic hasn't steered me wrong yet. 

The body knows, says Dr. Oz, and she is right. It does. It always has. 

My brain has held these things, these memories, all this time, just waiting for the opportunity to finish the gesture; play them out for good and let them fade.

I think maybe this is what we're doing now. I hope it is.

I hope this is what it feels like: a body that is letting go of what it has held so tightly to, because holding on seemed like the only way to survive.

I have a sense, not of mining through old fears-- I really don't have any conscious fear associated with these old memories anymore-- but of slowly clearing out a backlog so that I can begin to deal with the life that is in front of me.

These old things have been keeping me from being where I am, and it's time for them to go.

The body knows.

Let's do this, then, body. I've got some living to do.

Right here, right now.


Saturday, July 19, 2014

Tesseract

Strange and fascinating things** afoot in Girl Who Lived land this week!

Also: annoying and uncomfortable things.**

**It should be noted that the "things" in question are the same things. 

Pop quiz time: 

Considering all you know about me, in the contest between "fascinating" and "uncomfortable," which one trumps the other?

Take your time. Show your work. Eyes on your own paper.

Okay, pencils down.

DING DING DING!! YOU ARE CORRECT!! "FASCINATING" WINS BY A MILE!!

Because I am constantly on the lookout for interesting subjects to take on in this here blog, because I like you and I want you to have nice things, I really do, and therefore am happy to suffer a little on your behalf, I really am, because AUTHENTICITY and REALITY TV BLOG and MARTYRDOM and OKAY NOT REALLY.

Nah. I mean, you guys are cool and everything, but I really am actually that nerdy.

Hi. Sherlock here. We have met, have we not?
_____

To begin at a very good beginning place, this happened a few weeks ago:

Dr. Q was setting me up for a neurofeedback session and we were talking about the preliminary results (this was before the Q results that kind of rendered everything that came before them child's play), and I told her that her finding of clear markers for ADD was probably the thing that surprised me the most, because I'd never heard anything like that before and thought of that as a life-long condition that I should have known about by now.

She responded by reading me this great quote she had just discovered earlier that day from the book she was currently reading, Neurofeedback in the Treatment of Developmental Trauma: Calming the Fear-Driven Brain, by Sebern F. Fisher:
[Following a discussion of disorders in the traumatized brain, from OCD to addiction to personality disorders]
"I no longer see these as distinct disorders or comorbidities but as different manifestations of the same overwrought, dysregulated nervous system. With neurofeedback, we are attempting to tweak the dysrhythmias into rhythmic flow."    
"So in other words," said Dr. Q, "instead of looking at it as an individual diagnosis, you look at the brain as a whole. You've got intense anxiety and depression and hypervigilance constantly fighting for your focus. Of course you're going to have attention problems."

I love this. 

It's amazing, actually, how absolutely true and right that feels-- it snaps into the Universal Canon of Accepted Facts so neatly and perfectly and immediately it's like it's been there all along-- and yet how sort of revolutionary that notion is in Western medicine.

Got a symptom? Get a pill. There is no context.

(ESPECIALLY for ADD-related stuff and kids don't get me started I'll just drop this here and move on but I was a camp nurse for a season and I could tell some stories OMG and isn't this article fascinating and timely)

Ahem. Anyway.

Hearing that quote was a surprising moment of epiphany that unlocked my thinking about what is happening in my brain and body, and in the weeks since has completely reframed the whole game.

Now I'm looking at those test results in a whole new way.

Instead of a list of diagnoses-- which is frightening, intimidating, final-- I'm seeing a list of effects.

Anxiety. Depression. Hyperarousal. Difficulty concentrating, focusing, processing new information or prioritizing stimuli. Sleep disturbances. Migraine. Dissociation. The Fog. These aren't final resting places, but the current and flexible products of an overwrought nervous system; the effects of dysregulation on a brain out of rhythm.  

And that distinction is so very, very important because of this: 

The rhythm, we can change.

ARE changing. 

HAVE changed.

And you won't believe-- I can't believe-- what is happening already.
_____

I've already described what a neurofeedback session is like, and that hasn't changed now that we have the Q results. The only differences happen on Dr. Q's end, in the decisions about where to place the sensors and what frequencies to reward and inhibit. 

My part remains the same: sit in chair, look at screen, watch picture become uncovered, square by square, listen to beeps. 

Every 10 minutes or so, Dr. Q will stop the process and switch to a different set of sensors so that no area of the brain gets too over-worked. We train for about 30 minutes, max.

Seems short, mild, boring, yeah? You wouldn't think much could happen. I wouldn't even think so, and I'm the one doing it.

But the effects so far have been nothing short of astounding.

Before the Q results, we just did a general, calming protocol. And it was generally calming. My sleep was noticeably better from the first day.

I say noticeably better: I mean profoundly better. As in, "I haven't slept deeply enough to dream more than a handful of times in the last five years and now I am sleeping deeply and dreaming constantly and vividly all night, most nights" better.

No joke.

So there was that. There is also the small matter of the DISAPPEARING MIGRAINES.

Like, I've had ZERO non-menstrual migraines since I started neurofeedback, and have had two menstrual cycles with very short, mild, easily-managed migraine-ish symptoms. 

And she hadn't even started the migraine-targeting protocols yet.

Now, for the past two weeks, we've been doing the new, post-Q protocols, and here is where it has really begun to get interesting.

We're starting with the migraines. You may remember the pictures from last week's post that showed the areas of focus for this: the temporal lobes, on the sides of my head above my ears. These structures are also vital in long-term memory-- most notably (ahem) autobiographic memory-- storage and recall. They are also responsible for non-verbal emotional processing. 

(Psst: if you don't know how those two dots connect for me, I have a little homework assignment for you: the first 108 posts of this blog. Start here! Chop chop! It's a light, pleasant read! Won't take but a minute! ;))

Dr. Q has been putting sensors there, and rewarding frequencies other than what those parts of my brain are accustomed to using, which is causing some shifting in the rhythm.

And-- this is how neurofeedback works, remember-- that is naturally going to be the catalyst for a domino effect of some kind, right? These rhythms share a single context, as Sebern F. Fisher notes so eloquently in her book. Everything is connected. So it only follows that the treatment would bring the connections to light.

Case in point: the first few treatments on my temporal lobes have caused me to have very strong, very visceral, physical reactions in my body; the first of which was just odd, but the second of which is clearly, undeniably connected to the months immediately following my car accident.

I've had four of these treatments so far. The first two left me a little too amped up-- enough that I couldn't sleep afterward until nearly 3 am.

So for the third one Dr. Q tried something new. I'm not sure what it was. Something migraine-related, something known to reduce a specific type of pain.

On the way home from that session, I began to have sharp, shooting nerve-like pains in my upper right arm, at the very bottom of the deltoid muscle of my shoulder. Those spread randomly down my arm: elbow, mid-forearm, bicep. Every little while.

The next morning, I woke up with the same kind of pain, but much more severe, just to the inside of my right kneecap.

It hurt enough that it was difficult to rise to a standing position. I could feel it when I walked, but I could walk fine.

I went back to Dr. Q for my second session that week, and we agreed that it seemed likely it was connected to the treatment. She did another one-- I'm not sure it was the same or not-- and that night, I lost all doubt that these symptoms are related.

I went home and found that my arms and legs were... not quite falling asleep, but going cold with lack of circulation at an extreme rate, and I was unable to find a position that would "wake them up" for more than a few minutes. 

This was one of the biggest, most immediate effects of the accident, and something that lingers in a much milder form to this day. I haven't experienced it like this in 22 years, but the feeling is something that is inextricably tied to those early days, for me-- back when I still couldn't see very well, back when I still couldn't move very well, back when I still didn't know how bad it was going to get, how long it was going to last, if things were ever going to get better.

It's a physical feeling, but it's also an autobiographical memory. And an emotional one. 

The smallest of shifts, the first step into the maelstrom in this brain of mine, and we're already here, transported across time and space right to the heart of the matter.

Not wasting any time, I see. Very well, brain. Let's get started, shall we?

I was reminded immediately of the Tesseract from A Wrinkle In Time, which I read rather indifferently as a kid so don't ask me why I have this image on instant recall (oh temporal lobe, you kidder, you!). I was going to try to explain it but when I looked for it on Google images, it was a one-stop shop:


That's how they explain a Tesseract-- a time wrinkle, basically, or their version of time-travel-- in the book. (not to be confused with the geometric term involving cubes which... oh, just google it)

The moral of that particular lesson is that the shortest distance between two points is not a straight line.

Nope: it's neurofeedback. Well, neurofeedback and a loooooooooooot of therapy. Ha ha.

Anyway, back to the holy-shittedness that is happening in my body! Because I'm having trouble expressing how big of a deal this is to me. I think I'm really on to something here, and I think it is ENORMOUS.

I also think this neurofeedback is going to be a hell of a lot more intense and physical and painful than I thought, if this is happening right out of the gate.

But you know me: fascinating trumps pain every time, and this, no matter how irritating, is fucking fascinating.

I mean... you guys! We've officially entered the vault!

This is a piece of my past, and I am reliving it right now as we speak!

Except... holy shit. Right now, I know so much more than my 19-year old self did, don't I? 

I know that the bad part really is over. 

I know that I am safe.

I know that things got better. That things got amazing, and scary, and surprising and sad and wonderful and profound and disappointing and joyous and strange and all the other things that make up a life that's been lived.

I lived. Right now I know... more than I did then, at least... that I lived.

So maybe this is what I will do now. Take these memories out one by one, as neurofeedback brings them up,and re-experience them from my safe vantage point, and as my present convinces my past that everything is all right, the act of doing so will finally convince the present that it's true. 

That sounds a bit convoluted, I know, but after all, the shortest distance between two points is so rarely a straight, simple line.