Bravery

I was thinking a lot the past few days about what it is to be brave.  I had a friend tell me that I am brave, and the next morning I was engaged in a guided meditation to help me be less afraid.  I am always afraid, in a sense.  PTSD keeps your system in a state commonly referred to as “hypervigilance”.  Basically, you are always assessing for threats, even in environments where there is little or no danger.  And your body and your mind and your spirit are always feeling threatened by everything.

And all of that is totally justified by some form of trauma, but it makes being brave a difficult thing, while also making simply stepping out your door a step toward bravery.

There are lots of conflicting, dichotomous, and counterintuitive things about this illness, so the whole scared/brave thing is just one, but it often gets me thinking.

I remember a day when a friend labelled links to other friends’ blogs with one word descriptors, and mine was Brave.  I think I cried when I read that.  I never feel brave.  I always feel chaos and fear and indecision and doubt and whatever other anxiety-ridden thing you can think of.  Every moment.  Every day.

And it isn’t a fixable thing, really.  You cope, but your brain chemistry was altered at a critical time in your development, so there isn’t really any fixing the problem.  You live alongside it, and you delve into it, and you learn skills to combat it, and you find ways to rationalize it.  You never end it.

Yesterday, I went to the geneticist and then to the lab.  For the next month I will wait to find out if I carry the gene that likely caused my mother’s dementia, and find out if I might also have indicators of other dementia.  That was the act that was considered brave, but somehow it was the easiest thing I did.  And maybe that is because the other things I did had elements or consequences that I might have some control over.

I have no control over my genetic makeup.  That ship sailed over forty years ago.  And if I have the gene, I have Alzheimer’s to plan for and work against, so there are things I can control after the fact, but I can’t control the result of this test.  There isn’t a way to mess it up.  It either is there, or it isn’t there.  And knowing has consequences, I suppose, but not knowing has them too.

The other things I did yesterday, like going on a first date and going to a new pool and finding my way when I got lost in familiar surroundings, seemed harder.  I felt less brave when I walked in the door to that gym, or stopped to open up my map application to find my way, or met a new man who may or may not be a good man, or got on the bus, or let that man drive me home, or stepped out my door, or started a conversation with the other naked girl next to my gym locker, or did anything that day.  And maybe that is simply because my genetic makeup is like my PTSD.

It isn’t a fixable thing.

And I can learn to cope with it, but I can’t stop my genes from being my genes any more than I can stop my brain chemistry from being my brain chemistry.

In my mind, I’m not brave.

I’m honest, and I’m practical, and I’m self-aware. And maybe those things masquerade as bravery, but they aren’t.  I face what I must because I must, not because I am stronger or better or braver than the people around me.  If I had a choice, I wouldn’t face half of what I have faced in my lifetime.  But I didn’t have a choice.

So, I guess if the definition of bravery is facing what you must, I could be considered brave, but it isn’t a state that I see myself in.  It isn’t how I would characterize myself.

I am a survivor.

I fight my way through life, and I don’t back down from the challenges that come my way.  But what I feel—what is deepest and most prevalent during those moments—is not bravery, but fear.

There was a moment in my history where I stood over a man, with a sword at his throat, and demanded freedom and justice and an end to his tyranny.  That sounds like an epic tale of a brave knight, but I was terrified in that moment, and after, when I was safely away from the situation, I cried and shook violently as the adrenaline of the moment left and the terrified aspect came to the surface.  My demands had been met, yes.  But the way I felt in and after that moment was indescribably bad.  I didn’t talk about it until years later, and even then I had to have another clarify that the moment was real—that I didn’t dream it.  Afterward, I dissociated from the event, because I was that frightened.

Fear motivates many of the things I do or have done.  I’ve been divorced for 19 years not because I was brave enough to leave my abusive husband, but because I was afraid enough to run for my life.  I’ve raised a daughter on my own, not because I am a brave woman, but because I was afraid of what might happen to that daughter in the care of another.  I’ve survived homelessness, and sexual violence, and physical violence, and living in impoverished areas, and going back to school as a non-traditional student, and working in stressful environments, and physical and mental illnesses because I have two choices.  Survive or don’t survive.  Live or die.  Make it through or don’t make it through.  And I wish that I believed it was more nuanced than that—that I contained within my being some strength that others cannot draw upon, or that I had many options but chose the best ones to get me to today.  But I don’t think it was.

Most of my life has been lived in a state of laser-focused survival instinct.  Most of my life there were the two choices.  Leave or stay.  Fight or flee.  Live or die.

Over and over and over and over, I just choose to live.

So, yes, I went and faced the fears of the genetic testing and the unfamiliar gym and the first date, but I wasn’t necessarily brave during any of those parts of my day.  I just had to choose to live, like always.

And we are all meant to survive.  The instinct is so ingrained in us that even those who choose to die, struggle in the act of doing so.  Their bodies and their minds seek to stop that death from happening.  We are designed to keep fighting, keep reproducing, keep eating, keep drinking, keep breathing, keep going.  So, either we are all brave, or none of us is brave, from an evolutionary perspective.

I just do what I was designed to do, and I keep going.

There was a day several weeks ago where I didn’t want to keep going, but I did.  I kept saying aloud, “I can’t do this anymore.”  But, it turns out that I could do it, that I could persevere, that I could keep working and keep trying and keep fighting.  My instinct to survive took over, and I did what needed to be done to keep living, even when I didn’t want to and didn’t believe that I could.

I’m not brave.  I just follow my instinct to survive.

Sometimes I hear people comment that bravery is not the lack of fear, it is moving forward in spite of your fear.  And, to some extent, I can allow that by this definition I might be brave.  I keep moving forward in spite of my fears, but I don’t think I do it consciously, and with purpose, and in ways that I find noble or exceptional.  I just don’t know how to live in a state other than fear, so I have to push through it or I have to stop living.

That might sound strange to anyone who isn’t hypervigilant and trying to reintegrate disparate parts of the brain inside their head, but to me it makes all the sense.  To me, living is being afraid.  The absence of fear is death, and overcoming fear is an impossibility.  It will always be there.  And I might be able to use mindfulness and mandalas and yoga and CBT and all sorts of other things to cope with that fear, but it will never go away entirely.  And I have two choices: live in fear, or stop living.

I go on.  I always go on.

A month or two will pass, and I might have huge relief that I may not become like my grandfather and my mother, slowly slipping away until I am a shell staring into nothing, or I might have the knowledge that I will absolutely become like them, and work to put in place safeguards that give me and my daughter the best chances at choosing the way we deal with becoming like them, and choosing whether or not to risk creating another generation of those long, slow ends.  And I might have no conclusive evidence of risk or not risk, and simply have to wait and see if I lose my mind when I am old, like everyone else.  But none of those options include a caveat that says I might not go on.  Because I haven’t survived all of these things and gone on and on and on to give up on my survival instinct now.  I will go on.

And I don’t believe that makes me brave.  I think it makes me human. I think that when it comes down to it, and we are faced with survival or death, we all do what it takes to survive.  The actual doing may be harder for some than it is for others, but we all choose living over dying by default.  And I would rather live in hypervigilant fear, going out into the world and chancing whatever it offers me, than not live at all.

So, tomorrow, I will face another day, with new fears and new challenges or old fears and old challenges, but I will face it.  And though I don’t believe I am braver than the rest, I know that my commitment to facing what comes is strong and resolute.  I will go on as long as I am able, and in the best way possible.  Even if that time and that way are both filled with all sorts of reservations and anxieties and fears.

And to all the people who are thinking today that you can’t go on, it isn’t true.  You can go on.  You were designed to go on.  Whether you are brave or afraid, you will still go on.

 

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.

 

 

 

 

Naked As We Came

 

I’m listening to Iron and Wine. It is a little depressing.

It isn’t depressing because of the death aspect. The spreading of ashes around the yard doesn’t frighten me a bit. In fact, I am uncommonly comfortable with the concept of death. Maybe that is in part due to the losses that I have endured already, and the many people that I have “laid to rest”. Maybe that is also due, in part, to the times that I have had to face my own mortality.

It isn’t something everyone faces. Many people don’t sign the pre-operative forms that express that you may not come out of this procedure but are consenting, nonetheless. Many people don’t hear the diagnoses that make you wonder if you will still be around next week or next year or next decade. Many people don’t get the calm, and totally bullshit, speech about how “you needn’t worry because it might be nothing, but we need to make certain”. (If they really believed it was nothing, they wouldn’t need to make certain of anything, obviously. They do think it is something. They don’t refer you to specialists for normalcy.)

So, I’ve stood by as they lowered friends and family into the ground, and I’ve known the threat of death enough times to know that I don’t want to be put in the ground, but scattered to the wind. But the thing that makes me a bit depressed about the Naked As We Came song, is that I haven’t really imagined scattering someone around the yard, or them scattering me. My visions of death are rather sterile, and not at all attached to the presence of persons loved or who love me. I always seem to imagine my end in ways that connect with bright lights and cold metal tables, and not with the loving gestures of saying goodbyes and sending on those whom we have known with grace and beauty—casting them into the universe in their new ashen form, and in doing so, letting them go.

I remember after my friend Charles died, I spent a lot of time around his place and his family. There was something comforting about being near them, and they were just a bunch of good guys, in general. One day Pops, Charles’ dad, blurted out, “Catch!” He tossed me a little box wrapped in brown paper and I caught it.
“That’s him,” he said, almost too matter-of-factly.

But it was very matter of fact. It was a fact that this little box of ash held all the matter that was Charles. Charles + fire = this little six pound box. Holding him in my hands was not really all that significant. It had been significant to hold him before, but now all passion and connection and feeling was lost.

I’m not cold and crass in the ways that that statement might seem to express. I said my goodbyes as he lay dying in the street…crying out to the sky with a voice so pained that it hardly seemed my own. Sometimes you feel pain in ways that make your own pain foreign to you. I have that experience a lot, actually. Probably because my childhood made me an expert at dissociation. I can stuff my pain into hidden places and not find it for ten or fifteen years.

But I digress…

So death is not the struggle—not the thing to fear or fight against. But the not having someone who scatters those ashes is a fear. Or maybe not a fear, per se, but more of an unfulfilled longing.

My dad recently chose to impose a DNR and remove medication from my mother. She is in the later stages of Alzheimer’s and has spent most of this year in a nursing facility. My dad cared for her for the past several years, but she is unable to communicate, and doesn’t always cooperate, so it became impossible for him to keep caring for her at home.

I watch him now (or listen to him, I suppose, since I haven’t seen him in a year) and I see the ways he mourns this loss, slowly and deliberately moving through a grief and a death that doesn’t seem to have an end. Alzheimer’s is brutal that way—it takes so long to bring about the end.

I see him care for her in ways that I couldn’t have imagined ten years ago. It wasn’t that they didn’t love one another. I think they always have on some level. There were worse times and better times in their relationship, for certain, but that is what you sign on for when you vow “for better or for worse”, right? But these last few years, watching him become her caretaker and watching her slip from adult to teenager to toddler in her mindset and capabilities, I have seen something beautiful. I have seen a kind of love that my parents never allowed one another in their younger, more prideful, more strategic periods of living. Because when it all falls apart the need for one another becomes so great that all the other things sort of disintegrate. The need to be right, or to dominate, or have things be fair, or to maintain your autonomy, or any number of things that we insist upon in our relationship, all faded away for them and they became wholly devoted to one another. And some of that devotion was borne out of the reversal of their roles and an ability to show a side of themselves that was previously held in check or deterred in some way. My mom was always a control freak, until she lost control of her own mind. And my dad was always dependent by default because of that. And this period in their lives has flipped that relatedness on its head. My dad is the one in control and my mom is dependent upon him for all things. It allowed parts of them to be brought to life and strengthened their relationship, even while it slowly brings an end to their relating to one another.

And, while I don’t wish a slow, debilitating death upon anyone, least of all myself, I find myself envious of their experience in some ways. The romanticism of giving up everything for the one you love. The commitment to keep fighting and keep loving someone else through the thick and thin of life and relationship. The beauty of a history that can be passed on and can create legacy where once there were just a couple of lives. These things are the things that my life still hasn’t held.

And it isn’t that I am desperate for those things now. I’m not. I’m rather resistant to the idea of being tied to someone or not having autonomy or dealing with the complicatedness of joining lives. But there is something about having those things in my old age, in the spreading of my ashes around the yard, that seems very desirable, and the knowledge that I do not have that is what seems depressing, at present.

Of course, my beautiful daughter would scatter me to the wind with love and blessings and grace. I won’t just get dumped in the trash, thankfully. I’m sure that all the goodbyes spoken and felt will be beautiful and loving and good. But, that care and love and building of a home together are still such lovely ideals.

And here we have it again. The life of contradiction. The dichotomous being that I am.

I want to be alone, but I want to build a life with another. And you can’t really do both, I don’t think. I love the “both/and” option, but I don’t know that it is always a possibility. I can’t really avoid relationship and also have an ash scatterer in my life. And that is also depressing. Because it means I need to choose. And choosing means summoning a bravery that I’m not sure I currently have at my disposal. Because both options require what I haven’t yet got. One requires the opening of the self to the risk of being hurt and damaged in new ways. One requires giving up the ideals and the futures that Naked As We Came offers, and letting go of the ash scattering love. Both seem too difficult to accomplish today.

They are too difficult to accomplish today.

And they were actually too difficult for any partners in history to accomplish in a day. I suppose that is a comfort. It took 45 years for my parents to find the place where this transformation happened and I could see their love in this new light, so it might take some time for anyone to develop this idyllic relationship.

Your ash scatterer doesn’t just magically appear, I suppose. They are forged over time.

That seems a bit less depressing. That offers a bit more hope.

Maybe I can still build a home…after I am ready to risk. Certainly not today. But maybe someday. Maybe soon.

Hopefully, before I become ash.