Can’t Find a Better Man

The half growl/half crow of Eddie Vedder has long been a part of my own, personal war cry.  It both fed and poured out my teenage angst—my frustration with the things that were senseless, wrong, and unjust in the world, and my desire to be free from all of the pain and confusion and devastation that those things caused me.  I felt deeply.  Eddie did too.  You could sense it.  And you could echo it as you sang along.

Better Man was one of the songs that I connected with on a spiritual sort of level.  There were others.  And some even more deeply felt than this one.  But this one came to mind today, because I still feel the same angst at times.  I still know the challenges of being that one in the song—that one who can’t find a better man.

If you don’t know it … well, if you don’t know it you are either too young or too old or just plain Amish, I suppose, because Pearl Jam has been around for longer than my child has been alive (21+ years), and they keep putting out new music and touring the world with old favorites in their sets as well.  But, in case you have decided to go the way of Patrick Star and you live under a rock, I will let you know a bit about the lyrics, and the basics of the song.

She lies and says she’s in love with him; can’t find a better man.

It’s a woman, waiting alone in bed for some man who clearly sucks at being a partner.  She practices what she will say—what boundaries she will set, and what angry rant she will set forth when he finally dares to come home in the wee hours of the morning—but when he actually arrives, she pretends she is sleeping.  She keeps his failure and her misery to herself.  It feels like her fault that she chose him, and she does love him.  And somehow, they have this symbiotic, albeit unhealthy and unfulfilling, relationship that they both continue to choose.  And she echoes over and over:  Can’t find a better man.  Can’t find a better man.  Can’t find a better man.

If you’re like me, you can’t help but sing those words instead of simply read them.  They come to life in your head, in Eddie’s voice. And if you are even more like me, you remember singing those words and meaning them with so much truth that it pained you, and you weren’t entirely certain how to feel when the song came on, because the pain of the truth and the release of the singing it were also tied together in this strange way that worked so well.  Turmoil and beauty connected in a way that only the most broken of us can see, acknowledge, appreciate, and even love.

I felt Better Man so deeply not because I was in a relationship with someone at the time who mimicked the song’s poor partner, but because I was somehow already identifiable, before the terrible partners started lining up in my life and experience, with that woman.  Can’t find a better man.  Can’t find a better man.

Like a fish knows swimming is his mode of transportation, I knew that I deserved to struggle through bad partners—I would live this out, and this would be my pain.

How did I know that?

Pearl Jam, Ten, was released on August 27, 1991.  Twenty-eight years ago, I was still in high school, and I hadn’t had a “real” partner at all. I would start a relationship with my first “boyfriend” not long after this album’s release and have sex for the first time about six months later—if you could call it that … it was more like awkward penetration with mutual dissatisfaction.  And throughout that year, even though I was coming of age and starting to figure out that sexuality was even a thing, sheltered in extreme ways from all its forms and expressions, I had no concept of bad partners the way I would just a handful of years later.  Yet, before it happened I knew.  Eddie sang it the way I felt it, and I still understand it as deeply and with as much truth today.  Can’t find a better man.

Part of the challenge in my own situation, I think, is that Calvinism and the last bits of Dutch puritanism were so pervasive in my little sub-culture.  I knew, even when my conscious mind had repressed every single synapse of sexual abuse, that I was “damaged goods”, impure, unclean, sinful, tainted … you could say it a hundred different ways and it all hurt the same way.  Something in me knew that there was this stain on my reputation, according to the religious and cultural views that were held by those around me.  Of course I would not be worthy of a better man.  I was sullied by debaucherous sins.  “Good” men want “pure” women.  Obviously!

The other part of the challenge was the terrible partners that did start to line up in my life.  They only reinforced the idea that I deserved crap partners who treated me with disrespect, put hands on me in violence, didn’t give me the option of consent—either by force or by coercion and manipulation—and generally just acted like assholes.

How did I end up with this line of losers?  It’s a chicken/egg conundrum that we may never solve.  Either my low esteem attracted the sharks, or the sharks lowered my esteem until I was weak enough to pull under and drown.  But the how and why don’t matter a whole lot, unless you are an anthropologist of some sort.  What matters more is the effect, which was proving to me the stain on my reputation must be evident to all, and I am being punished for it, and given what I deserve.

I can’t find a better man.  I don’t deserve a better man.

And eventually, having remembered the abuse and having been flooded with images, feelings, flashbacks, nightmares, and all of the confusion, rage, and fear of childhood trauma returning to my memory from the deep recesses of my mind, I didn’t want better men.  I wanted dirty, dangerous men who would offer me the opportunity to use sex as a tool for inappropriate coping—reliving traumas through promiscuity and increasingly risky sex.  Better men didn’t pull your hair and pound their pelvis against your ass and call you names and do all of it while another couple had sex in the same room—the other man getting off on watching your face as you were being ridden like a bronco and his own partner looking on, infuriated that everyone in the room was focused on your pleasure and pain.  Better men didn’t pass you on to their friends after they had finished so that another could take advantage of a woman still in the throes of passion when the first man was already spent.  And I happily climbed atop another penis, grinding my pain into men as if my hips were a confessional and thrusting organs were penance I needed to endure until I felt clean again.

But no amount of sex brought me to a place where I felt clean.  I still felt undeserving of the love of a better partner. So, I settled for partners who claimed love but offered insecurities, control, abuse, lust, addiction, avoidant behaviors, and a plethora of negative and damaging behaviors that reinforced the idea that I didn’t deserve love, and a soulmate was somehow outside of my reach, while everyone else around me was allowed to find that “perfect” lover.

Can’t find a better man.  Don’t deserve a better man.  Unworthy of a better man.  Incapable of a better man.  The list of disordered thoughts goes on and on.  And the disordered thinking continues to this day.

I’m still settling for a man that needs “fixing” and babysitting and diagnosing and repeated forgiving for the same error.  I’m still not taking my own good advice, and I’m dating “potential” instead of finding a fully actualized man who exhibits the fullness of his potential in his current circumstance—he doesn’t have the potential to get his shit together; his shit IS together.  I still date men who aren’t the men I want to have and hold as lifelong partners.  And in some way, this must be tied to the idea that I don’t deserve that partner.  I cannot achieve that relationship.  I don’t get to have the better man.

Can’t find a better man.

Some part of me longs for the better man.  Some part of me has all sorts of desire for being in relationship with a loving partner who treats me with respect and equity—a person who offers me compassion and kindness and honesty and love.  And then there is this other part that cannot shake the Dutch Reformed purity bullshit that says I am not white like snow with an untouched vagina and therefore cannot find happiness with a partner who offers me those things.  The dirty of Calvinism doesn’t wash off, and the damage of childhood sexual trauma isn’t something that I can recover from with my PTSD diagnosis, so I sit in the muck of disordered thinking nonstop.  I sit in that muck and I get sucked into unhealthy relationship after unhealthy relationship, because my conscience is a liar and my good advice extends outside of myself and not inward.

The fact is, I won’t find a better man until I find the better in me.

It is here—the better in me.

In fact, good and better and best should define me.  They probably do to most others—the non-Dutch Reformed ones—who encounter me.  I’m not covered in stains, as Calvinism would have me believe, but am a woman who does now, and has always, fought for equality, love, goodness, kindness, rights for all, life, grace, freedom, justice, and all sorts of positive qualities.  I’m overflowing with love and compassion and care for others—all sorts of others, and not just those who look like, act like, and believe like I do.  There is so much better in me.  And such better deserves to be met with better.  This amazing woman definitely deserves a better man … or a better woman, as the case may be, because letting go of my early religion also let me grab hold of the truth that my sexuality is extremely fluid and not fixed.  Regardless, a better man or woman belongs in this picture.  The previous pain that Pearl Jam helped me express is not a pain that I should have ever felt, and I should always have believed that a better man or woman was waiting just around the corner for me, and we would share a beautiful life.

But I didn’t believe that.  I wasn’t taught that.  Eddie Vedder saw or knew or related with women like me, who didn’t believe that and were not taught that, and he sang our pain.  If only he could have offered a correction instead of a correlation and showed me that this wasn’t my anthem but a lie to which I was listening.  Maybe he did mean to show me that, but I didn’t see.  Instead I held the belief that this was my plight and my burden to bear.  I didn’t have people who were correcting my error or replacing that lie with the truth.  I had more and more affirmation that I was a stain and stains deserved to be tossed to the trash bin and left there with the rest of the unclean things.

Can’t find better.  Can’t be better.  Am not better—ever.  No amount of goodness can transcend the one bad thing, even when the bad thing was your victimization and far beyond your control.  Give up now, Christy, because there is no redemption here.  There is only purity and not purity here, and you are not pure.

I recently had the amazing opportunity to visit with a young woman who is living in a situation near to the one that I grew up within.  She mentioned to me an abuse that she suffered, and then said something along the lines of not letting it ruin her.  “Some people let it mess up their life.”  She said she wasn’t one of those people.  But later in our conversation tears welled up in her eyes and she told me of challenges with feeling unheard, and like her parents were not dealing with issues affecting the family, and a number of other things that I felt after suffering abuses as a child.  It is messing up her life, whether she intends to let it or not.  And part of why it is messing up her life is the same reason it messed up mine—the inability of others to find empathy, compassion, and understanding, and their insistence upon seeing the world in black and white, instead of recognizing and honoring the fact that we all live in complex circumstances and hard and fast “rules” or dichotomies of good/evil, or virgin/whore, or right/wrong don’t make sense.  Beyond not working, those strict dichotomies harm innocent people, and reinjure those who are already victimized.  They mess up lives.  They destroy lives.  They convince young girls (or boys) that they will never find a better man (or woman), because they are not deserving … because being a victim has left them stained for life—dirty, bad, and impure.

Not only do I deserve a better man than the ones that have been in my life in my history, but I deserve an amazing man or woman as a life partner.  I deserve that because I am not stained and dirty and impure.  I am an amazing woman, with talent, grace, empathy, passion, perseverance, love, and beauty that are unmatched by most.  I don’t say that to brag or because I am egotistical and narcissistic.  I say that because it is a truth that was hard to learn and needs to be remembered.  I also say it because it is something that many others need to hear and accept.

I am not impure, dirty, damaged, and stained.  I am a victim of horrific and terrifying crimes against my person.  My brain was literally malformed as a result of childhood sexual trauma that was ongoing and created captivity-like conditions, making my brain nearly identical to that of a holocaust survivor.  My hormones, my stress responses, my gut health, my brain chemistry, my bladder and bowel control, and more were harmed by this trauma, and more trauma happened as I was retraumatized when people didn’t believe my claims of harm, doctors broke confidentiality, I was forced to interact with my abuser, my family refused to allow me to speak about or address the abuse, gaslighting and victim-blaming became commonplace, violent abusive relationships resulted from my deep need for connection tied with my inability to form healthy connection due to my complex post-traumatic stress symptoms, and more.

All of this was me being victimized.  None of this was me being impure.  If there were lines that were crossed and bad things that were done they were done by my abusers, the people who didn’t listen when I cried out for help, the doctors who didn’t know how to help and didn’t refer me to someone who could, the family who refused (and still refuse) to address the issues afflicting me and us, the church that pounded the drum of purity so loudly that a young girl was shamed into silence about sexual assault and rape, the “friends” who chose to support the denial of the perpetrator and not support my claim of abuse, the people that told me to “give it to Jesus” and it would be gone who made matters worse by not getting me the help that I needed from medical professionals, and the many people who refused to give up their dichotomous thinking in the face of my pain and struggle and confusion and help ease my suffering.

But if you are one of those people, I don’t judge you, and I don’t blame you.  You were likely (and perhaps still are) stuck in a space where that black and white thinking was affecting your judgment.  You didn’t mean to wrong me, I am sure.  You didn’t know better.  And when you know better you will do better.

I hope that what I write here today will help you know better.  I hope that it will help you move toward doing better.

I don’t want a young woman to come to me and tell me her secrets because she can’t be heard in the space where she lives, just as I couldn’t be heard in the space where I grew up, and where the worst possible things happened to me.  I don’t want that beautiful woman to be holding on to those secrets until she is 40 years old, because she feels impure and shamed by a community that sees things in such black and white terms that it cannot give love to the wounded and the wronged.

I share my story, in part, to heal my own wounds.  It helps me to get it out on “paper” and to release it from the places where it has been hidden for all of these years.  But I also tell it for all of you.  I tell it so that if you are the young men and women who have also been harmed in this way, you can know that you deserve a better man, or a better woman.  You are not impure.  You have no stain.  You are perfect and pure and good.  Someone did something terrible to you.  You deserve justice for that wrong, not shame.  And if you are one who hears of a person or from a person who has been harmed in this way, listen and support that person.  Fight for justice on their behalf and be certain that they receive the aid that they need.  Never support the perpetrator because it is easier than supporting the victim.  Never place blame on the victim.  Never treat a victim as though they should carry some shame.  They do not.  They have been wronged, and they deserve better from you than what I received.

I’m dating someone now.  I’m not always certain that he is my better man.  He has a lot of challenges.  I have a lot of challenges.  It makes things volatile at moments.  But I don’t see things in black and white, and I know that he was a victim of lots of wrongs, just as I was.  So, we work at loving one another, the best way we know how.  He cares for me and he tries very hard to be the best he can for me.  And he is open, honest, and working very hard to be the man that I deserve in my life, because he knows that I am an amazing woman.  That is much more than any man has done for me in the past, so I am happy in this relationship now.  If that changes, I no longer feel tied to shame and insecurity and the idea that I am not enough, so I can walk away without reservation and seek out a better man or woman.  And that is miraculous, given all that I have been through.

I still love to listen to Vedder croon out the words to Better Man.  I still sing along with my teenage angst somewhat intact, but it is more a memory of what was than a feeling of the moment.  I know that I have a better man.  I know that I can find and that I deserve better.  I am not the unclean and impure that should be shamed.  I am the overcomer—the strong, the determined, the loving, the understanding, the one who learns and shifts and grows and fights and finds life, no matter the circumstances she is offered.  And no matter the circumstances you have been given, you can fight to overcome in numerous, amazing ways as well.

We don’t win every fight, of course.  I’m still disabled and suffer from PTSD.  I still have several family members who refuse to discuss the events of the past.  There are many who would still shame me for my actions—like having sex outside of marriage, or smoking weed to manage my fibromyalgia pain.  But what other people want to consider shameful doesn’t matter much to me anymore, because I know my heart and my intentions.  I know that I am a good person who does all that I can to promote equality and justice.  I love deeply, I seek to respect all, I honor the beliefs of others as long as they do no harm, and I work toward creating a better world in any way I am able.  That is what matters.  Lines in the sand, black and white thinking, and rules that shame and harm the innocent do not matter.  Your heart matters.  Your intent matters.

So, let go of shame, call out victim blaming, call out gaslighting, and speak your truth.  Bring evils to light and bring justice to every situation you are able.  Don’t hide.  Tell your story.  And, of course, find a better man—with or without the Pearl Jam album in the background.  (Just kidding—definitely with the Pearl Jam album in the background!!)

Thanks, Pearl Jam.  Thanks, Eddie.  And thanks to everyone who helped and still helps me to step outside of Calvinist shame and to step into the love and light of who I am over and above the victimization that I have experienced.  I am a better woman every time I take that step.

 

 

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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.

This Is About That

The other night, I was watching the latest episode of How to Get Away with Murder.  And I won’t let loose any spoilers, because only asshats let loose spoilers from the best and most intense cliff-hanging shows.  (I’m looking at you, people on the train loudly discussing plots and outcomes that we financially challenged people cannot have experienced yet, because the movie hasn’t come out in the more accessible VUDU app format.)

But, spoilers and asshats aside, a character on the show the other night pointed out that childhood trauma was responsible for her pain and her questionable behavior.  And I cheered aloud and then began to cry.  Because Shonda Rhimes had brought me the validation that is so often missing from the recovery process when one is harmed as a child.  She brought me the truth that today is still about yesterday for those of us stuck in trauma.  She brought that truth to a huge viewing audience.

This is about that.

There are lots of people who misunderstand that way that trauma affects us.  And much of the misunderstanding is due to the fact that we want to avoid trauma like the plague.  We don’t like to feel it, or see it, or cope with it.  We just don’t like the messy and unsolvable and uncontrolled parts of life, and trauma, especially childhood trauma, is the epitome of unsolvable, uncontrolled mess.

I don’t have the luxury of avoiding that mess.  That mess is a part of my brain, and not just in the way that a habit is ingrained, but in the sense that my brain was physiologically and chemically affected by childhood trauma, resulting in post-traumatic stress disorder.  And PTSD throws that trauma in your face constantly.  It isn’t a matter of “letting go”, or “getting over it”.  It is a matter of brain formation and function that is far outside my control.

So, when Ms. Keating offered the idea that her present was infiltrated by her past trauma, I related with that.  I related with that HARD.

And then I was disappointed with the next character’s reply.  Even though I know that his reaction is a common one, it seemed to invalidate the pain of the present being tied to the past.  But it is.  It absolutely is.

This is about that.

I would guess that the number of people who have told me that my choices are responsible for the situation I am in (regardless of what that situation was or what choices I had made) is in the hundreds.  And the number of people who likely think but do not say that my choices are responsible for the situation I am in is probably in the thousands.

Those people are wrong.

This is the point where I would like to add that you should READ TO THE END BEFORE POSTING RAGE-INDUCED COMMENTS.

Those people are wrong because my present challenges are not simply a product of my choices, and because trauma has informed my situation for almost forty years.  And it still does.

Here’s the thing:  Your past informs your present.  It simply does.  There are numerous things outside of your control that may have shaped your life to date.  You were born in a particular place, and in a particular time.  Your parents, or lack thereof, shaped the way you viewed the world in your early years.  Your access to education determined much.  Your family finances determined much.  Your skin color, and the resulting prejudice or privilege, determined much.  And trying to pretend or argue away that influence is a futile thing—because we might not be tabula rasa, but we are definitely affected by the things that make up our early years, and we carry some of that with us always.

Now, having pointed to the ways that we all carry our past, I would like to return our attention to my own situation.  My situation is not the result of my choices alone.  My situation is the sum of many parts, but the most influential parts were the traumatic parts.  And my choices—the way that I interacted with the world—were influenced by that trauma.  This is about that. My present is informed by my past.  And every decision has been one made under duress, because of that lingering trauma.

Trauma, untreated, compounds and builds and becomes more and more traumatic.  Imagine you fall, and in doing so break a rib.  It hurts, but you don’t go in to the doctor for treatment, because you don’t see an external injury.  You walk about for a few days, with that pain still lingering, and then one day, while lifting something heavy, that broken bone shifts and punctures your lung.  Untreated trauma, even in a strictly physical sense, can lead to greater trauma.

My childhood trauma informed how I saw the world, how I saw myself, how I viewed trust and love and care and communication.  And that information was skewed in such devastating ways, that every interaction, for the rest of my life was affected by that trauma.  My drug use, my chronic illness, my romantic partners, my earning potential, my friends, my jail time, my parenting style, my sleep cycles—all directly related to the trauma that I suffered in childhood.  And each resulting “mistake” or misstep based on that history created another skewed belief about myself and the world around me.

It still happens today.  Even with proper diagnosis, medication, and weekly therapy sessions, I still make choices based on that trauma all the time.  Because you can’t just wiggle your nose and create a new narrative.  It takes long, hard, painful work to even face the narrative that is mine, much less to create a new one in its place.

Today is about yesterday.  This is about that.  Trauma compounded makes my life a series of traumas, and that is absolutely not my fault.

Yep.  I’m saying it.  NOT MY FAULT.

My choices didn’t put me here, because they were based on a bullshit narrative.  The narrative started with the trauma.  It is the foundation of my entire life.  Annalise Keating, the character who expressed the truth on the show, and I share this foundation.  This is about that.  When your life is built upon a foundation of pain and confusion and denial and abandonment and fear, you cannot make all the “right” choices.  When your life is built upon love and trust and needs that are met, you can make decisions in a different manner than Annalise and I can.  But we don’t have that to build upon.  And building a life of love and trust and “enough” upon the foundation of pain and confusion and denial and abandonment and fear is an almost impossible task.

I’ve found that digging deep into my history and rooting out the beliefs that a small girl formed based on trauma is a strategy that works to help me move forward in healthier and better ways.  But that process takes many years, and much effort.  There are days when I jump in the ring and fight for my own narrative and my agency and my autonomy—building a more positive framework for my future by addressing that negative framework of my past.  There are days when I cannot find enough energy to fight, and days when parts of my brain take over and make decisions for me and follow rote patterns while I dissociate from pain or fear or some other thing that I don’t want to feel.  There are days when I make informed decisions based in new systems of belief.  There are days when I still believe all the core statements that a broken little girl formed in the midst of a shit experience.

Regardless of the way I connect and interact and act on each of these days, there is always the lingering trauma.  Either I am working at coping with it, or I am being overtaken and ruled by it, but the trauma is always informing my day, my choice, my life.

This is about that.

It has always been about that.  It may always be about that.  I don’t know if the work that I am doing to cope will ever stop being such hard work.  I know that I am developing coping strategies, and learning to frame life in more positive ways at times, and seeking to understand and address the disconnect inside my own mind—reintegrating my brain and finding greater wholeness. But I do not know that my altered brain will ever be free of the influence of previous, and especially childhood, trauma.

There is no cure for PTSD.  There is only coping.  And while I keep working toward coping, there are lots of ways that my finances and my health issues and the area I live in and the things I own and the way I approach relationships are already saturated with trauma, and wringing out all of that history and pouring in something better is not going to be possible if there isn’t more hope and more support and more money and more security and more safety at some point.  If there isn’t more good to replace the bad, then I just keep spinning around in a horrible life cycle of trauma repeating and compounding and reinjuring.

So, what is the point of this post?  I’m not entirely certain.  I suppose it is to voice what was voiced and challenged in the television show:  this is about that, and pain, unchecked and without validation and the pursuit of justice, brings more pain and more pain and more pain.

What can solve this problem?  Validation and the pursuit of justice.  Those are the only things that start to wring out the trauma and fill up the broken with hope and love and trust.  Believing, addressing, listening, validating, and seeking to end the pain for another, instead of running from trauma like you are being chased by a wildcat can solve the problem.  Offering peace to replace pain, offering loyalty to replace betrayal, offering encouragement to replace harsh words, offering truth to replace lies, offering things and funds to replace need and poverty, and offering support to replace abandonment can solve the problem.  They can’t solve it immediately, or easily, or even without any new or recurring trauma, but they can add to the work that the victim of trauma is doing, and help to create a better narrative, new core beliefs, and a perspective of blessing and kindness and good.  And that is a significant contribution.

This is about that.

I didn’t make my bed and need to lie in it.  The place where I lie, or stand, or sit, or walk, was made by a series of traumatic experiences that were not my fault, and I don’t need to remain there.  With the help of others, instead of the flippant judgments and imagined superiority that are often the normative response to those who experience trauma, I might be able to find a better place to lie, and make a bed that is comfortable, warm, and filled with love and kindness, instead of the one that I was thrown into by the actions of others.

Because this is about that.  My present struggles have been caused by the trauma of my past.  And admitting that, appreciating that, and addressing that with actions that change the narrative and offer a positive perspective are necessary for my situation to change.

I’m not alone in this.  Millions of people are suffering in the same way—living lives that are informed by and built on the failing foundations of trauma.  And it is time that those of us not fighting against that trauma stopped adding to the weight of that trauma, and started to support those who are working so hard to overcome the past and find better futures. Become part of the solution, and stop compounding the problem.  Believe a survivor.  Support a person in need.  Fight for justice, even when that justice doesn’t serve you personally.  End the stigma.  Ease the pain.

Because this is about that.

Dances with Dragons

It is no secret that I love the HBO hit series Game of Thrones.  George R.R. Martin is genius in so many ways, and the show follows suit.  And for many reasons, I wonder how Martin connects in the ways that he does to the plight of the marginalized in his medieval and magical imagined society.

One of the ways that I identify with the characters in this series has to do with the plight of the woman.  Not one woman in particular, but a great variety of women in a great variety of situations.  Raped, owned, captive, forced to do and be what another bids you to be—all are ways that women in the stories suffer due to their perceived weakness and their lack of agency.  But we don’t stop there.  We go on to tales of power and strength and cunning and a capacity for greatness in the lives of these fictional women.

I sometimes feel like a fictional woman.

That might sound strange.  I’m not bipolar or schizophrenic and manifesting with delusions that I am a character.  I simply bear burdens that I rarely hear about in true tales.  My life is an epic tale already, and I assume that I am still only about half way through my life, barring the development of fatal disease or the collision with a truck that might end it a bit early.

I’ve gone through so many things in my life that it is difficult to believe that they all truly happened.  I wonder how I survived.  I wonder if I have some cosmic draw upon the evils of our society.  I wonder whether the story has a glorious end, or whether the bad things will keep coming indefinitely for the rest of my life.

I sometimes feel like a fictional woman, because I have never met another who can relate to all of the things with which I relate.    I feel like this life is impossible, not plausible, and maybe a bit crazy—this life of struggle after struggle and story after story.

The marginalization, lack of agency, and captivity that the women of Westeros experience feel like real things for me.  There are moments it is too real for me—when I have my hand clamped over my mouth in shock and my stomach feels as though it has dropped out of my body, leaving an empty, sickly cavern in its place.  Being owned, being abused, being captive: these are things that I know intimately.  And most women don’t have that intimacy of knowledge and connection with all of the bad things you might imagine.  Most women have experienced some marginalization or lack of agency, but not with all the forms of marginalization and lack of agency you can imagine wrapped up into one package.

So, who imagined my story?  How did it become this epic tale that recounts the plight of each and every woman who crosses the pages of Martin’s imagination?  When did I become the poster-child for trauma and trial?

I think the answer is staring me in the face.  And I don’t want to name it—I don’t want to name him, because that will make me feel the unwarranted guilt of calling out the wrongs of those who made my story go so “wrong”.  Because somewhere, deep in my psyche, I still feel responsible, and I still feel shame, and I still feel confused, and I still feel like I need to protect those who harmed me.  That is crazy, and more than just a bit so.  That is a lot crazy.

The startling thing here is not my responses to trauma and trials, but that my responses are considered less acceptable than the actions that brought about those responses.  Molesting your family member, or sex without consent, or smacking around a non-compliant partner, or treating a woman like property are all less offensive to many than my psyche and my ways of coping with the traumas of my life thus far.  Even more startling is the fact that my depression and disability, which are directly related to those traumas, are seen as the marks of a dirty, lazy, crazy, messed up, burdensome, whining, free-loading, fuck-up.  My disabled status is more criticized than the ones whose actions caused my disabled status.  I am attacked for having been attacked, and not just being fine with that.  I am attacked for having been wounded and not just putting a Band-Aid on that shit and going ahead with life unaffected.

The ways I relate to the women in the imagination of Martin, and their portrayal by the producers of Game of Thrones, are ways that express the greatest possible struggles in life.  But I also relate to the women becoming something stronger and more powerful and more able with each passing event.  Hard things make strong people.  And I hate sentiments similar to that statement, in some sense.  I don’t believe that the divine offers us challenges to strengthen us or prepare us or make us useful in the lives of others.  I don’t believe that triumph follows trials, necessarily.  I don’t believe that what doesn’t kill us makes us stronger.  There are plenty of things that didn’t kill me that made me broken and weak and wishing that death had been offered instead.  But, I cannot deny that some of my strength was forged in the fire of evil attacks upon my person and my psyche.

I don’t want to say that I am better because I was treated worse than most.  That simply is not true.  I am far worse off because of the poor treatment I was subjected to in the past.  But I have also developed some great skill in coping and in fighting for justice and in being a beacon for those still caught in a cycle of dark, dangerous mistreatment and marginalization.

One doesn’t negate the other.

I’m a fucking mess who learned lessons in being amazing.  They exist in tandem—the broken and the brave.

And you don’t want to process that last statement.  It fights against the dichotomous thinking that we have been programmed toward for centuries.  Either/or thinking is rarely the best line of thought.  Both/and is the way that the world actually offers itself.  I am both broken and brave, at once.

The women of Westeros are broken and brave.  They are overcomers.  They fight to gain their freedom, their justice, their right to be whom they choose and not the ones they are told to be by others.  But the knowledge of trauma and its effects upon its victims lets me know, with certainty, that these women are also irreparably broken.  There are some things that you never forget.  There are some things that never stop having a hold.  And that hold doesn’t need to propel us toward evil and revenge and perpetual suffering.  Sometimes those things that have a hold are the inciting motivation for our desire to find justice and agency and bravery.  But they still have a hold—they still take a toll.

The thing that I need to keep remembering and reinforcing in my own life is that it is alright for those things to have a hold and take a toll.  It is okay to suffer the effects, and it is okay to fight for freedom from those effects.  And those two things can happen simultaneously.  I can allow both the bravery and the brokenness to exist and to be honored and to be experienced and to be felt deeply.

I am allowed to be both/and.

Sometimes my ability to press forward toward a goal of peace and justice and healing is inspirational.  Sometimes my inability to cope and overcome and heal is just as inspiring.  And it is so and should be so because I am both/and.  I am both a woman of strength and a woman who copes with weakness.  I am both a victim and a victor.  I am both broken and brave.

Learning to celebrate the difficult parts of your life and your person is not easy.  I’m certainly not to the point where I do so with consistency.  But I am closer to celebration today than I have been in a long time.

The challenges are difficult for the women of Westeros.  The moments of champion are many for these same women.  One doesn’t negate the other.  One informs the other.

In the same way, my challenges inform who I become and how I live in this world.  The bad things are not negated by the good.  The lessons don’t erase the loss.  The struggle remains real, even when it seems like I am overcoming, because there are those things that hold on—the things I can’t forget. And those things are a part of who I am, not just a part of who I once was.

Allowing yourself to be both/and, and accepting the brave and the broken equally, is not simple in its execution.  It is ridiculously hard.  It is something that I want to do, but that I am constantly told by my society that I should not do.

“Get over it.”.  “Let it go.”  “Just forgive and forget.” “Look at the bright side.” “At least you haven’t experienced [thing that one deems more crappy than your experiences].”  “There are children starving in Africa.”  “Focus on the future.”   All are well-meaning sentiments, and all are telling me to stop being the person that I was shaped and developed into, and to ignore and subordinate the majority of the things I have experienced.  And I think that desire to ignore and subordinate the broken and the bad things is a conditioned response.  I think that our society tells us that value is tied to good things, and those who experience bad things are people of little worth, or of poor character.

That is a terrible, incorrect, and damaging view—that struggles are the result of poor choices by lesser beings.  That is the root of every “ism” that we experience in our society—racism, classism, sexism, ableism, ageism, and more and more.

Instead of feeding the fallacy that my challenges are evidence of my personal failures, I would love to see a society that can live in the both/and.  I would love to feel that my challenges are just as valued as my moments of champion.  I would love to be treated as a whole—a woman who has trauma and trials and triumphs.  I would love to be accepted as I am, without judgments that minimize the effects of my past experience or tell me to cover up wounds for the comfort of others.

The thing is, I cannot cover up those wounds.  I am covered in wounds and scars, and those don’t disappear.  They might heal a bit, or stop openly bleeding, or be less pronounced over time.  But they never disappear altogether.

I have a scar across my lower abdomen from a childhood surgery.  It used to be a big, hip to hip, thick, red scar.  Now it is lower and thinner and just a touch lighter than the skin around it.  It seems to have shrunk quite a bit, as my body grew, I aged, and time passed; but that scar is still present and always will be.  And that is a part of my whole.  That scar is a moment in time etched on my body for life.  That scar is tied to psychological effects and physical limits and family dynamics and the response of my community.  That scar says all sorts of things about who I am and where I have been and where I am traveling now.  Because it says all of those things, it is important.  It is as important as this moment or any moment to come.  It shaped me and created a way of being and a way of reacting and a way of living that I would not have without it.  So, it needs to be honored and held and accepted and loved as an important part of me.

Identifying with women who overcome the worst challenges and become champions is something that most of us can do on some level.  But it takes a lot of deep consideration to understand the ways that the trial and trauma shaped the triumph.  It takes a lot of understanding to see that the victories are often bittersweet, because of the place where the moment happened, the change came, and the suffering informed the future actions that brought us to the victory.  That understanding is so needed.

Accepting my past is imperative to being in my life today.  Honoring my struggle and refusing to hide or ignore what is difficult to cope with is necessary for me to survive, to thrive, and to continue working toward moments of victory.  Being a champion doesn’t mean you are not still the oppressed and challenged and broken woman in some ways.  And acknowledging both the brave and the broken in me is so important.

Because none of us are only our triumphs.  All of us are both/and.  We are all light and dark, commingling in a storied history.  And it is time to begin celebrating that storied history.  It is time to sing and dance and toast to the storied history that includes both trials and triumph.  It is time to see the characters before us—both fictional and not—as both/and.  It is time to honor the whole person, and end the practice of trying to bleach the dark bits in our histories and our hearts.

I am working hard to love all of the parts of my life and myself.  That work is made harder by those who insist that the hard times and bad times and horrors that have been and are being endured should be hidden behind false smiles and kept behind closed doors.  I need for those around me to be willing and able to accept all of me, and to look at the hard times and bad times and horrors without recoiling in shock and disgust.

There is a moment when a character in Game of Thrones, Sansa Stark, is named by her challenges.  Her name—her title—is questioned because she was forced into marriages against her will.  The power and influence she might have is called into question because she is no longer a woman who holds her family name.  She replies by claiming that she is and always has been a Stark.  She did what she needed to do to survive, but that didn’t make her into someone other.  She has changed, but she is also the same.  Her history and her present are both tied into one.  She is twice married, but she is still a Stark in her heart.  She is both/and.

I think that it would serve each of us (and likely the whole of the universe) well to respond to and respect the both/and in the lives and personas and stories around us.  I believe that the acceptance of the light and the dark, the trial and the triumph, the challenge and the champion, allows us to celebrate who we are without the question of worth, value, purity, influence, or power.  Being who we are, wholly and completely and without shame, is only possible if we accept both/and.  I cannot celebrate and dance and play and love and live in the ways I want and hope to while others force me to question whether my value has been reduced as a result of the history I carry with me into today.  None of us can truly accept ourselves or others until we acknowledge that the dark and the light commingling is a part of our humanity, and that, regardless of what we are currently experiencing, we are still valued and loved.

We need to become a society that does not place value on one and not on another.  We need to be able to face what seems like it must be fiction due to the enormity of the challenge, and still smile and offer kindness and show love.  We need to be people who celebrate the whole.  We need to accept that the same character who is sold/married to solidify an alliance is also the Mother of Dragons.  And we need to celebrate her in both of those moments—the terrifying and terrible wedding night, and climbing atop a great beast and flying to the rescue—in a way that does not deny part of the story.  We need to find a way to accept that all have value, in each and every moment.

I identify with these characters, because I am forged in burning flames.  I have a storied past, and those moments shape this moment and the moments to come.  And I am determined to figure out the way to both dance in the darkness and dance with dragons.  They are equal parts of me.  They do not disappear, and they cannot be hidden.  They are parts of a whole, and should be honored as such.

Join me on this journey.  Let us learn to dance in darkness.  Let us dance with dragons.  Let us be both/and.

Food Chain

I’ve watched this progression happening inside my home over the past month or so.  The container garden in my sun porch at some point brought little flying bugs into the environment.  Whether they came from the soil or from the great outdoors is unclear, but they arrived, nonetheless.  And I have tried several remedies that promise to remove the microcosmic infestation in the front window, to no avail.

But the progressive part is that as the population of the tiny insects increased, so did the incidence of spotting arachnids.  Spiders.  I hate them.  I have an irrational fear of the spiders.  I’m the Ron Weasley of the real world—freezing, crying, losing the ability to speak, and basically freaking out when a spider comes calling.

For the most part, the arachnids have been tiny, in correlation to the tiny bugs, I suppose.  So, I am coping with relative sanity.

Next have come the “creepy bugs”.  Someone once told me not to kill them, because they consume spiders, so they are apparently a friend to the arachnophobe.  But they are no friend to me, because I consider them creepy.  They look downright scary.  They are some sort of centipede, I suppose, but they have legs jutting out the bottom en masse, and they have a symmetrical wealth of leg-like protrusions on the top of their bodies.  I’m getting a shiver up my spine just imagining them for long enough to describe them.

I remember a time with my friends Nic and Adam had a snake in their second floor apartment.  We lived in the same apartment complex, and when the snake showed up in their environment, I immediately jumped into anti-snake mode.  That meant a concerted effort to trap and kill any and all mice or rats that could be present in or around my apartment.  I’m not sure how you snake-proof a home, but the concern I addressed was the food supply for snakes, not the snakes themselves.

I never had a snake in my apartment.  I did catch some mice.  And the mice were present because some lady in another building on the complex had made it her personal mission to capture and send to shelters the cats that lived around the apartments.  Had she left them be, the cats would be eating the mice, and the snakes wouldn’t move in because they would have no food supply and a potential predator in the cats.

So, as I watch this little cycle of life in my window sill, I think about where I sit on the food chain.  And by this I do not mean that I am concerned with who or what might consider me meat.  By this I mean, what threats and resources are affecting my life, and why.

I’m not high on the list as far as human hierarchy goes.  I’m a disabled, impoverished, woman.  So that is at least three strikes against me.  I’m also white and educated, so I am offered some privilege.  I suppose if we were to consider the hierarchy of my society (and several others) a food chain, I might be the spider. (Ironic, since I am petrified of them.)

I might be the one who had a few being “below” and a few “above”.  I am not in the worst position, but I am not in the best.  I assist others, but I also need assistance.  I live in this middle space, clinging to a rung halfway up the ladder.  And it gives me, I believe, an interesting perspective.  I can relate to those with more and those with less.  I can relate with the “haves” and I can relate with the “have nots”.  But there are days that I cannot relate with either—or I don’t want to.

There are days when I want to leave this underserved, loud, dirty, potentially dangerous area.  I get tired of the noise—the sirens, the yelling, the gunfire.  I get tired of the long commute to anything and everything.  I get tired of not fitting in or looking right or getting stopped by the cops because of my white skin.  I get tired of being followed by dudes yelling “damn” at my ass.  I get tired of trying to explain away how or why I live here without outing myself as poor.  And I get tired of all the other people who seize stereotypes and make assumptions about this place I am tired of being in, because despite its faults, this is my home, and there is much beauty and strength in this place.

There are days when I want to be a person with greater means.  There are times that I feel jealous of the friends with cars and homes and second homes.  There are times I want the “American Dream”.

There are more days, however, when I want to scream at the people who have all of this, and to tell them what selfish, self-serving, privileged bullshit they participate in, without even knowing.  I get tired of people who are wealthy pretending they are poor.  I get tired of people whining about the inconveniences of their gigantic remodel.  I get tired of people saying they are broke and then going out to dinner every night.  I get tired of being associated with this type of upper-middle class person just because I am white and educated.  I get tired of people assuming that I belong with the “them” while I feel like an “us”.

Frankly, it is exhausting to be in this middle space, between two worlds, because I feel like I must constantly critique and defend one to the other.  I want everyone in my neighborhood to know that there are some generous and kind, rich, white people.  I want everyone who would not desire to set foot in my neighborhood to know that it is filled with intelligent, hard-working, kind people.  I need to constantly justify all the things to all the people.

And then there is the added stress of my own situation needing to be constantly justified.  I need money.  I need help.  I need time.  I need energy.  I need surgery.  I need to make it sound acceptable to have all of these needs, or people refuse to take seriously or meet those needs.

The middle is an impossible place to live.  You can almost touch the better things, but if you reach up you risk falling back down into a worse space.  So you stay, clinging to the little that you have.  Hustling and hoping.  Wanting more but not able to live through less.  Clinging to the place where you have barely enough to survive.

If that sounds depressing, it is.

There are no questions as to why my antidepressant medication dose keeps increasing.  This rung is a depressing one.  This middle of the food chain feels like a constant threat, but also like a huge blessing.  I’m not at my worst.  But I am also not at my best.

And here we arrive at the statement “ignorance is bliss”.  Because if I didn’t know the best, or the worst, I wouldn’t feel trapped in this middle, fearful of losing my grip and too paralyzed to attempt upward mobility.  The people around me hope with an unyielding strength I have never seen before.  They keep believing in the more, in the higher rungs, and in a new and better day.  I know that the new and better day is not what it appears to be.  I know that there is just a dollar or two between rungs.  I know that there is prejudice at the top that keeps those with enough dollars to move up tumbling back down.  I know that there is abundance and that it isn’t being offered to the people on the lower rungs.  I know that if the people above would just share, the whole fucking ladder could turn on its side, leaving us with equity, and even footing, and no need to compete at the climbing.  I know that those people don’t share unless it is in their self-interest, and their dollars come with strings attached.  I know because I am in the middle.  I know because I am the spider.  I know because I have one foot in poverty and one foot in opportunity.

The proverbial food chain allows for ignorance at the bottom and ignorance at the top.  But the middle is the space filled with knowledge—frustrating, hope-stealing, anger inducing, devastating knowledge.

I know poverty and possibility.  And I am not better off for it.  I am tortured by it.

The wealth of the top is achieved upon the backs of the ones at the bottom.  We are the macrocosm of the microcosmic activity in my window sill.  We consume one and escape the other.

And I can’t stop thinking that this is wrong.  I can’t stop thinking that humanity should be behaving with a more evolved and more educated system than the insects.  I can’t stop feeling that we are very far from what we were intended to be, and that the ladder and the food chain and the striving and the inequity are all distractions from where our attention ought to be placed.  I can’t stop believing that we should be placing our attention and energy on justice—on ending the ladder.

There is this line spoken by Daenerys Targaryen, a character in J.R.R. Martin’s Song of Ice and Fire Series, that mimics the sentiment that I often put forth.  After the many powerful houses of the era are named and called spokes on a wheel, she says with great conviction, “I’m not going to stop the wheel, I’m going to break the wheel.”

In saying this, she expresses that she will not simply be the newest in the line of leaders that overtake the current system.  She is, instead, going to destroy that system.  She is going to make a new way of being possible by taking apart the system of injustice currently in place.

I’m going to break the wheel.  I’m going to break the ladder.

I’m going to create a new system, and not allow the once unjust and oppressive way of being to survive.  I’m not going to tolerate the present and hope for a better future, but I am going to smash through the present to create a new present.

What if we stopped being a glorified food chain and broke the ladder?  What if we let go of the ideas of “earned” and “deserved” things and status?  What would Daenerys do today?

WWDD: What Would Dany Do?

How do we break the wheel in our own society?  How do I stop being the spider and consuming the fly?  How do I keep the creepy bugs from chasing me?  How do we create a system that doesn’t look like the unevolved and inhumane clamoring for power and money and resources, and instead looks like cooperative and compassionate co-existence?

I’m tired of being in the middle, but I am more tired of the idea of the middle.  I’m tired of caste systems and hierarchies and patriarchy and all the other systems of oppression and power that make us predators or make us lunch, depending on the situation.

It is time to function on a higher plane.  It is time to break the wheel.  It is time to end this system and find a new one.   It is time for human beings to step outside of the food chain, and use our enlightenment for good and not for evil.

It is time to stop treating one another like meat.

 

 

Documented

Documents and documenting are serious themes in the past few weeks to months.  It is interesting to me the ways that we are forced or encouraged or inspired to document, and all the different reasons that are used to justify or explain that documentation.

I recently had to make a trip to my local office of the Chicago Housing Authority.  I had used their new online participant portal to upload requests for a rent renegotiation due to household income changes in both August and February.  In August, they denied my claim, saying I had not attached documents proving my claim—but I literally uploaded them per the instruction of the site, and had copies and receipts of all the attached information.  Last week, they claimed that I had never made a request in February, and that my mailed documents of proof (which I had mailed to avoid the same result I was met with in August) went to the wrong address (the address listed on their form and web page, by the way).  So, they claimed there was no proof that I ever applied for a renegotiation.

Not true.  I had documents and receipts a plenty this time.  There was no way I was letting the lack of documents be my downfall this time around.

So, I went into that office with an entire folder full of documents.  I brought documents proving I applied with proper documentation in August and was denied.  I brought documents proving I applied again in February, and supporting documentation that I deserved the rent adjustment at that time as well.  And, for good measure, I brought in documents removing my daughter from my household over a week before she moves into her own apartment.  All of those documents were copied and admitted and dealt with by the office manager at the office, and then she said, “Now, the only thing we are missing is two documents signed by your daughter and we can get all of this processed.”

Gaaaahhhhh!!!!

I called my daughter and asked if she would head down to the office after work to sign these added documents.  They closed at 5, and she made it there at 4:45, signed the documents, and in the next 30 days, my mailbox will receive documents that tell me whether or not I am allowed the revision in rent, whether or not they will back-date to the dates of application, whether or not I will receive a refund of the monies I overpaid due to these errors on the part of the housing authority, and a document that tells me to come into the office again and sign about 45 other documents so that they can give me documents to take to my landlord, so that he can accept my voucher sans dependent child document and let me keep living in the same home I am currently living in.

If you thought being poor was tied to laziness, you are an idiot.  I fill out as much paperwork as any doctor or lawyer I know.  I just don’t get paid for filling it out—unless you count rental assistance and food stamps as getting paid, which I don’t, because safe housing and food security are basic human rights. (A fact that most developed countries have embraced and created systems of care to ensure. But not the United States, because we are selfish, entitled brats who believe we somehow earned our privileges—in other words, ignorant assholes.)

And if you thought you heard the word “documentation” enough for a lifetime in my earlier paragraphs, then prepare to be disappointed!

There are all sorts of other forms of documentation that are tied to my disability case.  The disability system is such that you are denied the first time.  Almost everyone not in a wheelchair, nursing facility, or mental ward is denied.  That is just the way it works (inefficiently and expensively).  You acquire documents from all of your doctors, you fill out numerous assessments, you add in assessments filled out by those who know you or live with you, and then you wait for documents that say you are denied.  After the denial documents, you go find a lawyer, and they make you sign about 87 documents because you must sign disclosure statements for every lawyer who might work on your case, not just the law firm, according to the state, effectively requiring the disabled person to sign the same document 4, 5, or 6 times, depending on the number of lawyers in their particular firm.  Then you wait for the exact same assessments to arrive and be filled out another time, and collect the same medical records, but your lawyer asks you to keep them informed of any changes in treatment or diagnosis and to document your wellness or lack thereof, so you give all the paperwork you did last time, plus you begin logging your daily mood, daily function, daily tasks, and any and all changes that happen, to support your case when your redetermination is denied, and then you have to file paperwork requesting a hearing, and get back a document that says you will be given a court date in about 10 to 12 months.  Then you document changes and function and symptoms and such for a year, while you wait to bring all the information amassed in the past three years before a judge.  Who, if we have done all the things correctly, will create a legal document stating that I am, in fact, disabled.

It isn’t difficult to understand, at this point in the post, why I hate documents.  I am so overwhelmed with paper that I sometimes feel it is drowning me, and paper cuts are just par for the course in my situation.  If I don’t have any, I worry that I must have missed some paperwork that needs filling out or filing.

But yesterday I was introduced to a new form of documentation.

Yesterday, two friends came over to help me create a video for my fundraising page.  And we started by documenting things.  One suggested things that we could document, and the other started slowly, but surely, taking video and still footage of all the things.  We started with adaptive tools—the things I need on the daily to live life: special knives and peelers and openers for the kitchen, a tool to tie buttons and pull zippers, various adaptive pens and pencils and cutters (because I can’t use scissors without severe pain and injury), and more.  Then we moved on to the overflowing basket of medications and the daily pill organizers that are filled with multiple doses of many of those medications.  We also printed a copy of my next two weeks of appointments, which required three pages of paper.  And we looked up the list of current illnesses, which wasn’t complete since not all of the things are recorded in the same place, but still took almost an entire page.  Next was physical therapy and occupational therapy papers that show what exercises I am to be doing daily.  We spread them out over the floor, and as I was preparing them I dropped papers that scattered all across the living room.  My friends filmed as I sat and worked to collect and organize this pile of documents once more, and caught on camera the fact that I cannot see some of my therapists due to insurance refusals, documenting that my medical needs are sometimes not met because of money.  And by that time we were all exhausted and decided that we would need another meeting to document all of the ways that my illnesses affect my life—maybe two.

But this documentation, this mini-documentary of my daily life, being made by the son of two documentarians and his fiancé, was eye-opening and expressive of things that I hadn’t imagined.  My life is really difficult.  And there are all sorts of proofs of it.

However, the thing that was most shocking to me was that I am doing all these things.  I am doing my exercises and using my splints and walking in water to get some cardio and eating 1100 calories and none of them sugar and filing all the papers and bringing in all the documents and taking all the medicines and attending four and five medical appointments each week and stretching and meditating and coloring mandalas and doing art therapy and studying nutrition and gardening and using my paraffin bath and doing yoga and writing and more. I am doing far more than anyone might imagine, because I am doing far more than I could have imagined.

When I look at all the things that make up my life, and I am drowning in the sea of papers, and exhausted or craving chocolate or in pain, and feel insignificant and incapable, I rarely look at the proofs of all that I am doing.  I look at all the documents that show I am not “good enough”–poor and sick and lacking.  I don’t look at the documentation that shows me doing every possible thing I can do to be the most well I can be.  I get dragged down by the negative proofs and don’t even consider that there are positive proofs.

While some might not understand the life of the chronically ill person, and will refuse to believe the proofs laid out in my mini-documentary, I know that I am doing so much hard work to live my best possible life.  Whether that means I walked the dog, or I ate vegetables, or I colored for a bit, or I remembered to connect with my breath, relax my face and neck, and engage my core when feeling fearful or overwhelmed on a stressful transit ride, or I washed the dishes, or I asked for help, or I practiced new body mechanics, or I managed to finish an article or blog post, I am doing everything that I can do to live well.

My previous ideas of living well were not good ideas of living well, in many ways.  And when my focus shifted from living out my pain in ways that brought more pain to creating a life that included education and progress and sufficiency and stability, I thought that meant I was on the path to living well.  And I believed that documents like my resume and my degrees and my personal and professional references were the ones that would bring me other good documents, like the deed to a house and paystubs that showed more than three digits before that decimal point and an insurance card that I could bring to the orthodontist to receive services.

But I had it wrong.  None of those documents are proof of living well.  I know plenty of people with bigger incomes and better insurance coverage who are not living well, but are full of contempt and hatred and negativity.  I know plenty of people with lots of letters behind their name from years of education who are completely ignorant on important points.  I know plenty of people who are physically and financially well, but complain every time I see them about one thing or another in their life, refusing to see anything that has good or peace or acceptance or joy at its core and only seeing the negative.  None of those people are living well.

Documenting my life started as a project to garner support from others, by offering proofs of my need.  And, I suppose, that is still one of the goals of the project.  But, it has become much more than that for me.  It has become a proof of the fullness of my life, and the extent of my dedication and strength, as I work day after day after day to live a life of wellness—improving my body and healing my mind in any way possible.  This video will be something that shows others what dealing with constant physical and mental suffering is about, and give them a glimpse of why my financial need is great at this time, and demonstrating why I am incapable of working enough to support myself and depend upon the generosity of others.  But, for me, this video is the catalyst I needed to find self-compassion and to stop denying my tenacious work toward a life well-lived, but accept and proclaim and honor the fact that I am a warrior.

I am not weak, but stronger than almost anyone I know.  I am not lazy, but offer my body the rest it needs to heal and cope and survive.  I am not stupid, but suffer cognitive impairments due to my illness.  I am not reclusive, but work to foster and put energy toward only the best of relationships with the best and most supportive people in my life.  I am not crazy, but deal with multiple mental illnesses that affect my thinking and choices.  I am not playing the victim, but am coping with the ways that I was truly and deeply victimized by all manner of perpetrators.  I am not scared, but am learning to manage hypervigilance and overstimulation and anxiety caused by my diseases.  I am not giving up, but am fighting for every moment of every day to create the best possible life I can live with my challenges.  I am not begging, but I am placing my need before my community in the hope and the trust that provision will be offered in return.  I am not desperate, but I am allowing myself to be vulnerable and open and honest in expressing my struggles.  I am not whining, but I am telling the truth about the realities of chronic illness—and if you think that telling my truth is whining, note every time you complain about a thing, and see which of us expresses more complaint per actual struggle (I’ll bet on you, unless you are dying or also have chronic illness).  I am not lying, exaggerating, or making things up, but I am telling the harshest of realities without any sugar-coating to make it more palatable or acceptable to others.

And I know that it isn’t very palatable or acceptable to discuss any sort of true suffering in our society.  I know that we generally avoid pain, and we lie about who we are and how we are doing on a very regular basis, and we chastise or castigate or cast out any who express in their words or actions or being any hint of the lies we are telling or the avoidance we are seeking.  It is the reason we don’t make eye contact with the pan-handling person on the corner, or look down on the addict or the sex worker, or pretend that we “earned” our privileges and not that we are taking part in a system of injustice that is harming others and refusing helps for those in need.

I wonder, though, if it is possible to truly live well when we can’t look in the eyes of the homeless, or see the addict and the sex worker as our equal, and admit that we have privileges and seek to create a more just system that offers basic human rights to all people.  And I move toward an answer of “no”.  The more I identify with the least and the lowest of the society, and the more I hear people’s judgment and lies and excuses to reject my illness or my need or my deserving assistance, the more I believe that I am living well, and those others are living sad and sorry lives.

I know that I am living well.  I am putting every ounce of energy into being stronger, more able, less dependent, more mobile, calmer, more balanced, thinner, more educated, more aware, and just better than I was yesterday, and I am doing it in a way that doesn’t deny my experience, but embraces the reality with which I am faced and by which I am surrounded.  I am doing it without shame and with honesty and vulnerability.  And I am doing it in ways that recognize my privilege and stand against systemic injustices.  I am living well, and am proud to be doing so.

So, I am no longer afraid of or weighed down by documentation.  I’m learning to embrace the documents in my experience as proofs of transformation and hard work and betterment.  I’m learning to see every piece of paper as a document that shares life and fights disease and seeks equity and justice, even when those papers are also annoyingly redundant and seem ridiculous.  And I am also recognizing that every word I write here, and every thank you note sent, and every photo with friends and family and my dog, and every selfie of a new haircut, and every update or post or page that is put out by me or on my behalf or with me tagged is also documentation, and it is documenting a most beautiful life.

Bring on the paperwork, world.

Paper cuts or no, I am ready to keep on documenting and to keep on being the best and the most I am able to be.  And no matter how many diagnoses come my way, and no matter how many treatments and therapies are added to my daily routine, I am going to keep on adding documents that show a life of wellness—maybe not in my body, and maybe not in my psychology, but definitely in my spirit.

I will live life well and share a record that screams of legacy and not of lack.