Sleepwalker

I once, according to my dad’s telling of the tale, came downstairs from my room, obtained a jar of jam from the refrigerator, took a spoon from the silverware drawer, and started to eat jam directly from the jar.  When Dad questioned me, and asked what I was doing, I became defensive.  Whatever was happening in my head, it was determined that jam eating in the wee hours was normal and not an offense of any kind.

And that is a fun little anecdote regarding the sleepwalking of my childhood.

There are many.

My dad also tells tales of other sorts of sleep disorder, however—sleep terrors and nightmares.

Sleepwalking is rare.  Estimates place the percentage of the population that completes complex action while asleep around 1 to 15.  The phenomenon is a sleep disorder, and it is usually associated with either sleep deprivation, stress, or both.  The combination of this disorder with those of nightmares and terrors is even more rare.  It is hard to say how many people might suffer from all three, because the one experiencing the events often has no recall of the events.

In the past few years, I started to sleepwalk again.  While I have no recall of the events, I have evidences of the events.  One morning, bread was laid out on the kitchen island, as though I were preparing to make a sandwich.  Another morning, I woke to toasted bread, still sitting in the toaster but stale and cold.  On yet another occasion, I woke to near-freezing temperatures and realized that I had turned the thermostat all the way down as I slept.

It wasn’t until I mentioned these events to my sleep specialist that I started to understand the presence of sleep disorders is directly related to stress.   And in my case, that stress is related to a loss of bodily autonomy through chronic sexual abuse and medical testing and treatment for bladder and kidney issues.  Usually adult sleepwalking is tied to and triggered by childhood stressors.  My sleepwalking (along with incontinence and suicidal thoughts) returned shortly after a visit from my brother, and repeated arguments that took place during that time.  The insistence that I do as he believed I should, and the lack of respect for me and my autonomy that such insistence belied, threw me right back into that childhood self with symptoms of extreme stress.

Getting along with my brother is an impossible task.  He wounded me in ways that can possibly (I hope) be forgiven, but can never be forgotten.  He created a vacuum in my life that sucked in all sorts of damage, abuse, and pain.  And while some would argue that the “victim card” isn’t a thing that I get to “play”, the fact is that I am a victim of horrible abuse that does not stop affecting me.  And having a perpetrator of abuses in my physical space, and having that perpetrator tell me what to do, is an impossible to ignore affront, whether it is meant to be or not.

People talk about “finding their inner child”, like it is a fun and freeing thing.  But my inner child is terrified, wounded, confused, and under mind-altering levels of stress.  I don’t want to find that—ever.  But I don’t get a choice, because that child finds me on a regular basis.  She returned in a blink of an eye after that visit with my brother.  And she didn’t leave.

I began sleepwalking again because that child started running the show while I slept—the early expression of my post-traumatic stress coming back into my experience.  This is often the case with sleepwalkers.  If we do it as adults, we likely also did it as children.

I don’t know that I eat jam from the jar in my sleep anymore.  But I am definitely exhibiting the stress that I did in childhood within the circadian patterns that I currently experience.

The nightmares I can make go away.

I didn’t know that was possible until a few years ago, when the nightmares were increasing, and the trauma of the past was leaching from me and leaving a trail of symptoms across my life.  It was at that point that I was finally properly diagnosed with C-PTSD.  And that diagnosis brought the beloved off-label use of blood pressure medication which stops the nightmares.  Or, to be more succinct, it stops me from engaging with the nightmares or remembering the nightmares.

Minipress, or prazosin, as a treatment for PTSD, was discovered incidentally by a Dr. Simon Kung at the Mayo Clinic in Rochester, MN.  The medication had been around for decades, but it was not noted as an effective treatment for nightmares due to PTSD until 2012.  Thankfully, I receive medical care at a teaching hospital that uses cutting-edge treatments, and I started on prazosin mere weeks after my diagnosis. My brain can still engage with flashbacks and nightmares, but my body is prevented from interacting with that engagement, and I remain asleep and unaffected by the subconscious terror.  It still amazes me that this is possible, after having interacted with this terror for over 30 years.  I am in awe that we can simply shut off that terror during the night.  And I am extremely grateful for Dr. Simon Kung’s work to find, study, and disseminate the knowledge that I, and many others who suffer PTSD symptoms, can experience peaceful sleep.

While the medication doesn’t prevent me from sleepwalking, it makes my sleep much more consistent and much less traumatizing.  Having sleep, the restorative and balancing action your body requires, become a source of fear is a terrible thing.  And being able to participate in and enjoy sleep is nothing short of miraculous for my beleaguered and exhausted self.

I feel like this turned into a term paper, and not a blog post.  But it is important, apparently, for me to recognize and report about the challenge of suffering symptoms of stress and trauma during the night … and to present alternatives.

Because, as someone recently told me, people need to hear my stories.  And I am committed to the telling not just because I think it might assist others, but because speaking truth is freeing.  Expressing the challenge and the need and the struggle and the fight and the overcoming of obstacles and the strength and joy and relief of that overcoming is important.  It is such because my voice is my only chance at regaining the autonomy lost as a child.  My voice is the only thing that can offer that child some peace and restoration.  That young self, and my triggered adult self, both need to know and feel and trust that there is a path to good, and that we can walk that path and find that end.

I might make sandwiches or eat jam from the jar in the night for the rest of my life.  I might, just as easily, find the release of stress that I need to stop that sleepwalking from happening any longer.  And it is necessary for others to see this hidden-by-the-dark experience, and to validate that experience.

Because while I don’t fault those in my life for not knowing that I was expressing in my quirky sleepwalking moments the grave burdens of an abused child.  The science wasn’t there.  The advocacy wasn’t there.  The skilled psychiatric specialists were not there.  The only thing that my dad could see was a girl doing weird things—expressing the inexpressible in the ways that my subconscious self could.  And it couldn’t express it well enough, or loudly enough, or clearly enough to spare me the trauma … but at least I tried to express it in some way.

I can express it now.  I’m determined to express it now.

I’m determined to give that child a voice that can be heard, understood, and validated.  I’m determined to let her speak, to cry, to scream out the things that her jam-eating, sleepwalking, nightmare-having self couldn’t quite manage to express.

That little girl experienced chronic, escalating, sexual abuse.  That little girl also had doctors and nurses poking around in her most sensitive and sacred parts without any sort of trauma-informed care.  That little girl was lost in a sea of pain, and she nearly drowned in those deep and dark waters, as the waves beat her and threw her against the rocks.  That little girl needed to say that she was dying from the weight of trauma and shame and conflict and fear and confusion laid upon her tiny chest—crushing her ribs, puncturing her lungs, and making it impossible to breathe.

That little girl also needed others to hear her and to offer validation and to acknowledge the injustice and offer hope and comfort and help.  She still needs that.

I try to offer it to her.  But it is hard to trust just one voice (especially when so many deceptions have been spoken in your experience).  It is hard to assure her that she deserved safety and autonomy and privacy and justice and good.

It is hard to assure my adult self—this grown-up version of that girl—that she deserves safety and autonomy and privacy and justice and good.  It is hard to believe that my voice can make a difference.  It is hard to believe that I am heard.  It is hard to find validation.  It is hard to find hope and peace.

But that little girl fought hard to survive.

And I am going to keep fighting her fight.

Pills

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This morning I asked the dog, “Wouldn’t my mother be proud of me, swallowing up to 11 pills at once?”

Shockingly, he responded by turning his head to one side and looking at me with cuteness and confusion, wondering if I were asking him something he wanted to hear … he hasn’t mastered English language just yet.

Why, you may wonder, would that impress my mother or be a source of pride?  Swallowing isn’t usually a thing to be praised.  (My mind hit the gutter there … and now yours did, since I mentioned it, right? Apologies.)

Swallowing pills isn’t usually a thing to be praised.  (Better?)

But for me, it was a huge challenge for years to swallow pills.  I remember vividly my mom trying every possible trick she could for me to get a tiny little tablet into my system the day before procedures.  Putting it on my tongue and then having me drink didn’t work.  Cutting it smaller than its already tiny form didn’t help.  I think that the most effective, and the most disgusting, was the buying me donuts, having me chew up a bit of the donut, and then shoving the pill into the center of the chewed food before I swallowed it.  Donut holes became a semi-regular event in my life from the point when we discovered that trick.

But the thing that struck me this morning was not that my mom spent herself to the point of exhaustion and utter frustration in order to make certain I swallowed the pill and was appropriately prepped for procedures, and not that I have accomplished the task and perfected it in ways that would offer my mother pride, and lets me take only a moment to swallow my medications, but that I remembered vividly the processes of prepping and procedures for medical purposes.

It is strange what the brain holds and what it does not hold.

My mother’s last words to me were, “I really like your hair that way.”  And that was the only full sentence I had heard from her lips in many months.  Why that sentence got through, and nothing else, I cannot explain. Nobody can explain it.  But it is a sentence I appreciate.  It was fitting, since my mother’s approval was something I always strived for and rarely received, and her disapproval was often focused on my hair and its current color or style, that the last thing she said to me was that she approved of my hairstyle.

I don’t know that it was a sign or a message, but it definitely made me smile … after the initial shock of hearing my mom form a sentence and look me in the eye wore off.

What her brain lost and what it held was always a source for surprise and question and analysis and much laughter, but there weren’t really any answers as to the “why”.

What my brain lost and what it held is similar.

I vividly remember the process of getting a pill into my stomach, and I vividly remember almost every single invasive or upsetting or stressful medical procedure I endured as a child, and I always have.  But while I was cataloging every moment of the medical trauma, I was erasing every single moment of sexual trauma.  Why did my mind hold one and erase the other?  Why was one captured and one cast into some recess of the brain and locked there for years?

And my first instinct was to say that one was cause for shame and not the other, but that isn’t accurate.  I wet myself with regularity due to my body’s defect, and I was mocked mercilessly for that.  And after surgery, when I didn’t have those ‘accidents’ anymore, I was mocked in the locker room because of my scars.  There was a lot of shame tied to my medical issues. And maybe there was more shame associated with the sexual trauma, but I don’t think that one was without shame and the other filled with it.  There were aspects of shame tied to both, yet I held one in my conscious mind with great detail, and the other I forced away.

As someone diagnosed with Complex Post-Traumatic Stress Disorder, I am learning that the ways the brain forgets can be really great and amazing.  My brain shut out traumas to protect me.  And since the moment those memories returned I went into several years of meltdown, I know that my little, young self could not have coped with those things.  My 19-year-old self couldn’t cope with those things.  Some days my 41-year-old self cannot cope with those things, though I’m learning more and better skills to cope now than I ever have before.

I am also learning that my brain suffered a division when the trauma happened.  Parts of my brain stopped talking to one another, and they still can’t seem to get those synapses firing all the time.  I dissociate from time to time, blocking out things that are uncomfortable or that remind me of other things, or just breaking myself in two and living in conflict with my own thoughts and ideas.  I’m a big pile of contradiction and incoherence and cognitive dissonance.  And all of that is because my young self held some thoughts and blocked others.  And I had no control of what stayed and what went.

Eventually, both combined into one larger trauma.  Not having control of your body is bad in any sense.  But the cognition of not having control over what happened to my body in the medical sense and the dissociation of not having control over what happened to my body in the sexual abuse sense became tied in ways that I didn’t understand until recently.  And the way that tie became apparent is by wetting myself like I did when I was a child when in the company of my abuser … at age 39.   My brain made my body lose control, and potentially continues to do so.  My pelvic floor dysfunction is possibly psychological and possibly physical, but more than likely a combination of the two.

So, I am back to the start, in a sense.  But this time I am remembering all, and the medical and the sexual are one trauma, melded together in some strange ball of a loss of autonomy.  And now I lose even more, with PTSD and fibromyalgia having effects on my brain and body that I cannot control.  I can only cope.

But at least I can cope, some of the time.

At least I am at a place where I can address all the things, and know when I am dissociating, and see how the disconnects are affecting me, and learn how to start putting myself together once again.  At least I am in a place where the memories of both can be acknowledged, and the path that I took to today can be better understood, and the ways I act today and the things I now believe can be explained.

It is amazing what the brain holds and what it releases.  But even more amazing is that I am learning how I can choose what my brain holds and what it releases.  Meditation and mindfulness are showing me the way to control my reactions to thoughts, and mandalas are helping me integrate my mind, and therapy is letting me voice the feelings tied to events that I was before expected to keep secret, or to accept silently.  I get to hold things.  I get to release things.  I am regaining that lost autonomy.  And I am expressing it … loudly enough to piss a bunch of people off when I won’t comply with social norms and religious expectations.

I am screaming autonomy.

I am choosing, even though I can’t choose what happened or what will happen in my life and experience.  I am choosing how I act and react in the midst of what happened and will happen. I am no longer letting my brain do the filing without my input, and I am making certain to assess what I release and what I hold.

I likely have a 50% chance of ending up like my mom, with my mind slowly deteriorating and losing thoughts and memories and faces and, eventually, life.  And if I do have the gene for Alzheimer’s and I do lose bits of my brain to disease, it will be difficult.  But I don’t worry about that the way I once did, because I currently have better knowledge and control of my thinking than I ever have, and I no longer need to worry and catastrophize and create struggle inside my head.  I can accept and release.  Even this idea that I might lose my autonomy in some ways or someday is not a source of struggle, because I know that such disease won’t define me.

I define me.

And accepting the ways I can’t control my life and my future, instead of struggling against them is what I am trying to choose.  I want that to define me—the idea that I accept myself and my life in the moment, and that I can act and react in positive ways, even in the darkest of experiences.  That is my choice.

The thoughts I hold and the thoughts I release are mine. The perspective with which I view things is mine. The ways that I act and react are mine.  The traumas that happen to me, are not mine to hold.  Those belong to the ones that harm, not to the ones harmed by them.  And no amount of victim blaming is tolerated in my space any longer.  That I am letting go.

And I don’t know that being me, in the way that I choose to be, would make my mother proud.  There is probably a lot that she would challenge and dislike, if she were here to do so.  But that doesn’t matter.  Because I am not letting other people define me any longer.  I am not letting the events that happen around me or to me define me.  And having the pride of others, or the acceptance of others, is a bonus, if it happens, but it isn’t my goal anymore.  I no longer strive for anyone’s approval but my own.

And I am very proud of who I am.