Wide Awake

I woke to a crash at 5:00 this morning.  My daughter’s cat has finally managed to do what I have been anticipating for some weeks now—she broke some shit.

I investigated the crash and found that the beautiful orchid that was thoughtfully gifted to me after my recent hip surgery was currently lying on the living room floor, surrounded by chunks of clay that now resembled an exhibit in a museum rather than a pot.

Thankfully, the orchid itself was mostly intact.  Though, being a living thing, it has the opportunity, as do all living things, to experience shock, so we shall see if the trauma of being knocked to the ground has a negative effect in the coming days.  (Fingers crossed that it stays beautiful and blooming for a long time.)

I swept up the bits of pottery and a bit of dirt.  I put the orchid into another pot and placed it back onto the television stand where it resides.  And then I tried to return to the warmth and comfort of my bed to sleep again.  But the cat had started a chain reaction.  Because I was awake, the dog assumed it was time to be up and about, so he continually nudged me and licked at my hands until I gave in to his demands and took him outside.  And then, because we had begun the morning routine, he decided he should also have food.

While feeding him, I realized that he was out of water, so I filled that.  Then the idea of water alerted me to the extreme dehydration that was causing my tongue to stick to the roof of my mouth.  I drank two glasses of water and, when that didn’t seem like enough hydration, I downed a Gatorade.  And then, after using the bathroom, I went back to my bed once more.

But sleep would not come.  I was now wide awake.

As is customary, I began to think about all sorts of things while I laid there hoping for sleep.   I have medications that help me sleep at night.  I take the first at 7:00 pm, and take the last at 9:30.  There is a complex system of getting my brain and my body into a sleep state.  Sleep doesn’t come easy for me because of a few illnesses that I cope with, but I have developed a great system over time, and most nights sleep comes with relative ease.

Morning is another story.

Once I had begun the routine of the morning, I couldn’t get back to sleep.  And, while my brain wasn’t as functional as I would have liked—I sent a text to my daughter that said “don’t gorget” when I meant to remind her “Don’t forget to ask about time off for xmas”—I decided that if sleep would not find me, I would simply get up and do things.

The words “wide awake” kept returning to my mind in the semi-dazed moments when I was still struggling to sleep.  And while I can understand the connection in the literal sense—my inability to sleep—there was something beyond that use of the phrase that kept coming into my consciousness.  I couldn’t help but think about what being wide awake means in a more proverbial sense.  I couldn’t help but think of how I became the person that I am today, and how that person is one whom I consider “wide awake”.

People often use the word “enlightened’ as an insult when they respond to what I post on my blog or my Facebook page.  Many seem to take offense when I express my views, and they react by making sarcastic and rude comments.  A fair amount of those comments includes mocking my “enlightened” state.  This past week, I had multiple people slinging verbal attacks at my blog comment section.  And those attacks included that term “enlightened”, used as a pejorative and not a compliment.

But as I laid in bed, and remained wide awake, I had the overwhelming feeling that enlightened is exactly the correct statement to describe me.  I am wide awake.

Let me elaborate.

I have been through transformation after transformation.  And some of those transitions were not easy or came at great personal cost, but life doesn’t easily become other.  We like to stay in our little bubbles of safety and familiarity and commonly held understanding.  We don’t like change.  We certainly don’t like change that takes deep thought, definitive action, and amazing strength.

I never had the luxury of a bubble.  The place that is safe and familiar and commonly held never existed.  And that safety and familiarity will likely never come to fruition.  Mostly because the amygdala doesn’t heal after long-term exposure to abuse, fear, stress, and captivity in developmental stages.  You just keep on being in fight or flight or freeze mode for what seems like eternity, but is actually a lifetime.  Some people might comment here about how devastating and sad and sorrowful that mode is, and how it needs to be fixed.  But they would be wrong.

Here is why:

I’m always afraid, but that fear has made me capable of enlightenment—not in the pejorative sense, but in the literal sense.  I have been given this strange and difficult story to live out.  But because it is strange and difficult, it offers me reflection and recognition that many do not experience.

I’m wide awake.

When you see things in the light which I have seen things, you need to change the way you think.  You cannot come into contact with new ideas and different experiences and come out the other side with the same thinking you had before those things happened.  You cannot see what I see and know what I know and not change the way you participate in life.

I’m an addict.  And many people I know would say that this is a choice—a moral failure on my part.  But those people are not addicts.  Addicts know better.  We know that there is no amount of choice and will power that can keep you clean or sober in an environment where drink and drugs are present.  We know that this is a chemical imbalance in the brain, and a weird reaction in our pleasure center hastily throws us into the rock bottom of substance abuse.  We can manage this disease.  We cannot cure this disease.

I’m a divorced, single parent.  And many people would say that this, also, is a moral failure on my part.  But those people weren’t living in my household, with my abusive partner, and experiencing the terror of never being able to control what happened to me.  Domestic violence survivors know that you cannot go back and start over.  We know that the violence escalates, and it doesn’t reset at the beginning when you reach a terrible end and decide to “try again”.  Instead, you pick up where you left off—in a terrible state and creating greater and greater catalysts for further violence.  Sometimes you just need to leave.  Sometimes your life, and the life of your children, depends on you leaving the violence behind.  But that isn’t easy.  Domestic violence survivors know this.  And those still in abusive relationships know this too.  Because when you have been manipulated and conditioned in ways that leave you isolated and without resources, there isn’t a safe place to go or to be.  It is much harder to start life over with nothing than it is to stay and suffer through the abuse, in many cases. We know this.  We cope with this.  We cannot “fix” this.

I am disabled.  People constantly misunderstand or deny that fact.  “Get well soon”, is an offensive statement.  Because I know what it is to be in pain every hour of every day and night.  I know what it is to have to mourn the life you planned and worked for and ran toward.  I know what it feels like to always be unable and to always feel insufficient and to constantly be in need.  It doesn’t feel good.  And the people who say “get well soon” and who suggest I edit my life or my lifestyle in particular ways do not know that feeling.  They don’t have to mourn the loss and feel the pain.  So, their “solutions” are not only impossible to carry out, but they are reinforcing the idea that I am faulty, not good enough, and not accepted as I am.  I understand this disability in ways that most never will.  (And thank the Divine for that, because I don’t wish this experience on anyone.)  I manage this disability.  I work to be my healthiest self.  I cannot get rid of the disability.  I can’t “change it”.

I am pro-choice.  This is one of the things that makes so many people use the term enlightened in sarcasm and mockery.  This makes so many people think I am a moral failure.  But I live in spaces where choice is essential.  I live in a space of poverty.  I live in a space of fear, of scarcity, of abandonment, and of desperation.  And I should never be forced to bring a child into that space.  I was molested, assaulted, and raped.  I know what it is to not have agency in your life.  I know what it is to not have agency over your own body.  I know what it feels like to be used and owned and threatened and left alone in shock and disillusionment, because other people didn’t listen when I cried out for help.  So, I know what it is to need control over your own body and your own life and your own choices.  Because I cannot let another determine what happens to me.  That cannot happen again.  I cannot have someone else control me—not after all that I have endured.

I’m wide awake.

I understand why people reject my ideas.  I understand that they cannot see from my perspective.  I get why they don’t want to hear and accept and work through the things that I say or write.  It is hard work to change the way you think and behave.  It is hard work for me too.  But I know that I need to keep living my life with eyes wide open, and accepting even the most difficult and dangerous of facts and stories.

I didn’t get where I am today without struggle.  Struggle was often the catalyst for change, because I was shoving myself forward in ways that meant I met many others on my path, and I encountered facts and stories that I couldn’t have encountered if I hadn’t been on that path.  And my path is a rare path.  Not many travel through all the levels of hell that I have walked through.  So many have not had the terrible blessing of a hard life with life-altering experience.  It is awful and wonderful.

There is a quote that I think might be helpful to increase understanding here: “It was the possibility of darkness that made the day seem so bright.” ― Stephen King

For those of you who prefer religious text to horror and suspense novelists, there is also this passage from Ephesians 5: “but everything exposed by the light becomes visible, for everything that becomes visible is light.  Therefore, it says: ‘Awake, O sleeper, and arise from the dead, and Christ will give you light’.”

I am wide awake.

Many people look at the darkness that is expressed in my posts.  They think that these supposed “moral failures” and the challenges that I face are evidences of evil, and of a need for change.  And maybe I got to this place because of darkness, in some sense, but that darkness made the light possible.  I shine out all the brighter because of the dark.  Darkness isn’t necessarily a thing on its own, technically speaking.  It is the absence of light—or of light perceptible by the human eye, at least.   Light shows up, and then we can see clearly, because of the reflective and refractive rays that show up as colors and shapes that we could not discern in the darkness.

Everything that becomes visible is light.  And light is what makes everything visible.  Yes, I know that is circular reasoning.  It is also true.

Here’s the crux of the matter:  I believe that my life is full of light.

I’m wide awake, and the sun is shining down upon me.  It took a while for it to get here, and I watched it rise over the city this morning, but it is now shining down upon me.  And the light shines out all the brighter because of the contrast against the darkness.  Was it devastating and sad and terrible to be harmed in my history?  Yes.  Was it difficult to find my way beyond the pro-life stance that I adopted to fit in with my friends and neighbors and to step into the truth that science and experience offered, becoming pro-choice?  Yes.  Was there much that seemed dark and damaging and defeating in my life? Yes.

But there was also light.

There was love, support, grace, the voice of the Divine, strength, fortitude, passion, and purpose.  There still is.  It just looks a bit different than I had imagined it would.

I’m wide awake, because I let the light of truth transform me, over and over again.  Each time I encounter something that doesn’t make sense, or challenges my current belief system, or shakes me out of dissociative states and requires I be present and thoughtful, or offers a story that has new perspective, I let the light shine upon it.  And that light transforms my ideas, my actions, and my person in many ways.

Last week there were people who called me names in my blog comments, and made all sorts of assumptions about who I am and how I think and what I do.  But today that doesn’t bother me.  Because this morning I was wide awake, and saw clearly (with help from some insights borrowed from a friend) that the upsetting thing about these interactions was not that I am morally bankrupt or doing life wrong, but the upsetting thing is that these people are not letting light shine in darkness.  They are not stepping into truth and letting it transform them.  They are not listening to my story, even though they may be reading my words. And they are not doing so, because it is very hard to do.

Darkness gave me what others lack:  the opportunity to distinguish the dark from the light.  Darkness pushed me toward the path of the light of truth.  Escaping the suffering meant moving toward a new way of thinking and being.  And that way of thinking and being is better than the way of my past.  Truth and light shine in my present and my future.

I’m wide awake.

I understand my situation, and I know my value, and I feel my emotions, and I acknowledge my weakness alongside my strength.  I live in the light, and I seek truth.  If you believe that you can know better, and understand more about my life and my history and my current situation or actions, feel free to make your suggestions, but please do not be angry when I tell you that I don’t need your input right now.  Because I am walking the path of light, shining out in the midst of the darkness, and I don’t necessarily believe that your comments are contributing light.

I know what I am doing.  I know when what I am doing is helpful and when it is not.  I can own the times that it is not helpful.  But I have an awareness regarding my life and my situation that you do not share.

I was recently reading a book from the Song of Ice and Fire or Game of Thrones series.  I was talking with my physical therapist about watching the show versus reading the books, and I told her what I have told others:  I like reading the books, even though I know from the show what is going to happen, because the books offer you internal monologue that the television series cannot portray.

I think that this applies to my life too.  Others can share my experience to a degree, but they are not allowed the privilege of being inside my head, and feeling and knowing and understanding the depth and breadth of who I am and what I believe and why.  You are missing the monologue that shapes the story in important ways.  You are reading from your perspective and not from mine.  And if you do not seek my perspective when you read my words, then you are not practicing the empathy that is required for change and connection.

My perspective is important.  And yours may be too.  But insisting that I do not know my own situation or life experience or whatever else pertains to me, and that you know a better way of being me, simply because you say so (with no facts to back that up whatsoever), is not only uninformed, but it is offensive.  It is offensive because I am an aware, educated, experienced, adult.

There’s more to me than people know.

And I am wide awake—shining light on my life and my surroundings to continually seek truth.

Whatever I am, and whatever I do, I do it wide awake.

And now, I think it is time for a nap. 😉

Bully

When I was a girl, I suffered from a medical condition that made it impossible for me to maintain control of my bladder.  I had a major surgery just before my tenth birthday that corrected this issue, but up until then, I was tortured by classmates and neighbors.  I was less than ten years old, and I vividly remember one neighbor picking up a rusty nail from a parking area across the street from our homes and suggesting that “we shove this up there so you can stop peeing your pants”.  I remember the taunts of “Christy Pissty”.  I remember being isolated, depressed, ashamed.  This is what children did to me.  Children that were seven or eight years old did this to me.

Where did they learn that hatred and violence?

In the fifth grade, after the surgery and the pant-wetting had stopped, there was this girl, Tammy, (her name is not changed to protect her identity, because she was a fucking terrible person then and she doesn’t deserve my protection).  (Also, I may be spelling her name wrong, but I have no desire to remember the correct spelling of the names of those who tortured me.)  Tammy was friends with Shawn.  Shawn had been my friend for many years, because our parents were friends and we grew up together.  Tammy had the strange idea that three persons cannot be friends together.  I’ve never understood this whole “best friend” thing, and feel like there is more than enough love to spread around.  Lots of girls somehow get an impression that this cannot be true, and that they need to secure the best friend status of one other, and eliminate any competition.

Tammy convinced Shawn to run from me on the playground.  Tammy took the time to create hand drawn cards for both Shawn and I, and then to deliver the whole cards to Shawn through the Kindergarten “mail” that was teaching them how to address letters.  I received a very large package through the Kindergarten mail service.  Everyone crowded around to see what I had been sent.  It was the cards, identical to Shawn’s, ripped into tiny pieces—a pile of hatred on display for everyone in the room.  Everyone laughed and taunted me.

Where did she learn this hatred and violence?

In high school, I became a nomad of sorts.  I didn’t connect with a single group of peers, because I had grown to mistrust people.  (Shocking.)  But I still wanted friends, obviously.  And many people failed me in this stage as well.  I would hang out with a group of boys that were nice and fun to be around, so people called me a slut.  I still had the influence of Tammy.  One Sunday night, I waited by the cold, drafty window that faced the street for my friends to pick me up to go out.  They never arrived.  “There wasn’t enough room in the car” was the reason that Shawn gave.  But they abandoned me, without a word.  Shawn felt the guilt and told me the excuse, but the rest didn’t seem to care.  And somehow I had been singled out as the one who wouldn’t go along.  I was the one crying tears of pain and loss and confusion all night.

Where did they learn this hatred and violence?

I thought college would be my respite.  New friends.  New opportunities.  It was going to be new and different and better.  And it was for a few months, until I started to have memories of childhood sexual abuse.  I confided in a few people.  Those people told other people.  Those people asked friends of my abuser if he had abused me. They asked him.  He said no. (Shocking.)  And I was immediately called a liar and a fraud and all sorts of other things.  I was once more isolated and shamed and abandoned.  I had failed my way out of college by the 3rd semester.  Not only was I finding it very difficult to find and maintain healthy relationships, but the lack of support made the weight of dealing with the memories and nightmares heavy enough to break me.

Where did they learn this hatred and violence?

I proceeded to live out my pain.  Drinking, sex, drugs, harboring runaways, and finally marrying a man who was violently abusive.  He never hurt me while we were dating.  It wasn’t until a month after our wedding that I was first physically smacked—backhanded in the kitchen while I washed dishes.  But the ways that he harmed me weren’t just physical.  Cycles of abuse include manipulations that most cannot imagine.  It is more akin to a cult than a relationship.  Isolate, degrade, shame, and then, once control has been gained, violence against your person.  Getting pregnant gave me the reason I needed to leave.  I would have stayed until I died, I suppose, were it not for the fear that my child would learn to be like me, or like him.

After I left him, I continued on the path of addiction and struggle, even getting involved in a less violent, but just as controlling and unhealthy, relationship.  But even after I left this second relationship, and I worked to regain control of my own life, and to find some peace and some safety and some stability, people kept being bullies.  Church friends would judge me.  Family would challenge me.  Poverty became a reason to treat me poorly, and being a single parent became a reason to shame me.  There was always someone, somewhere actively working to harm and humiliate.  There was never a place where I was safe from harm.  I was always attacked, in some form.

Where did they learn this hatred and violence?

I’ve gotten to a point where I can mediate between the world and my heart in more effective ways.  I’ve been in therapy and on medication for a few years now, following my diagnosis of PTSD.  I’m learning to care less about the things others say and do.  I’m learning to find self-compassion and self-definition, instead of relying on others to tell me who I am and what I am worth.

I still have the occasional bully in my sphere.  It is difficult to get rid of them altogether.  There are so many who are pursuing their self-interest at the expense of all others.  There are so many who are looking at their decisions only from their perspective, and ignoring the impact that exists beyond their own interests.

Where did they learn this hatred and violence?

And it is hatred and violence to ignore the plight of others in order to gain more money or status or freedom or stuff for yourself.  It is hatred and violence to isolate, to shame, to deny equal rights, to deny basic human rights, and to ignore the pain of others.

I was raised in a conservative religious setting, and I obtained two seminary degrees, so I often default to the bible when I look to quote something that expresses the ways that actions are rooted in hatred and violence.  The Good Samaritan parable of the enemy of the harmed caring for him when his own religion and state and race abandoned him to death is one of those very easily quoted parables.  Your own interests are not good excuses for not caring for others is the basic lesson in that story.  But there are also many passages that talk about putting first the interests of the poor and the refugee and the sick and the imprisoned and a host of others who may be marginalized.  There are also many that speak to the judgment that will come down upon those who do not have love as the basis of their actions.

I often find it ironic and sad that the place where I grew up, and the people I know from my history, were often so filled with hatred and violence while they assumed they were in the role of the good Samaritan.  They thought they were the hero in the story.  But they were not and are not.  They are the villains.  They are the bullies.

Since the election the other day, there have been numerous reports of hatred and violence.  Swastikas and n-words and the simple moniker “Trump” have been graffitied everywhere from the sides of cars to the doors of prayer rooms.  Muslim women have stopped the religious practice of wearing burqa or hijab out of fear.  Children are taunting other children, with deportation or isolation or death being named as the fate of brown and black and Muslim students.

Where did they learn this hatred and violence?

They learned it by watching a bully become the president-elect of their country.  They learned it from the rhetoric they hear in the news and around the dinner table.  They learned it by watching the adults in this country make the grave error of choosing a man who spouts hatred and incites violence at every turn as their leader.  They learned it by living in a society that places self-interest above the health and vitality of the society.  We would rather burn with big screens than live peacefully with one another and share resources.

Donald Trump is the Tammy of my current situation.

The threat to end healthcare for millions is a real threat for me. I am chronically ill.  I qualify for Medicaid under the expansion required by the ACA.  I will not have healthcare if that is repealed.  And, without the other ACA requirement of insuring people regardless of pre-existing condition, I will likely be uninsurable.  I’ve had about 200 appointments and four surgeries this year.  I take 18 medications right now.  I see between two and seven doctors per week.  All of this care keeps me in a state of disability, but a rung or two up the ladder from death.  Without this care, I will drop down to the death rung.  I die.

Without food stamps, without insurance, without housing assistance, and without disability, I die.  Losing any one of them will potentially cause the loss of all others.  My life is in danger, because we (and by “we” I mean the electoral college and don’t include myself at all) elected the bully.

When I was left crying that night by the window, left behind by my “friends”, I am relatively certain that all the people present didn’t want me to be abandoned and harmed, but at least one of them did. And by following the lead of that person or persons, friends that had been such for a lifetime were lost.  The effects were devastating, and each person who went silently along in that car was responsible for my pain, because they didn’t put an end to that pain.

Taking stock of my life, and seeing the ways that bullies operate, and the ways that their actions affect others, I am trapped in a serious situation once more.  After living through all the things that I have lived through, and enduring all the struggle while another profited from my demise, I see clearly the ways that electing a bully will impact the nation.  The people who have let this go on, and who have elected a bully, are committing themselves to the ideals of bullying.  They are allowing hatred and violence to win the day, and to rule the country.

I need to ask you, are you going to be the boy with a rusty nail, or the Tammy, or the abusive husband, or the manipulator/cult leader/champion for hatred and violence?

My childhood, my teens, my adult life—every moment and every experience—could have been radically different if the people around me had not been conditioned to consider themselves before others, above others, and in control of others.  The people around me learned it by watching other people (probably their parents) adopt and embrace individualism and reject care and compassion and empathy for others.  Whether you are using the choices one makes or the color of one’s skin as the litmus test for whether you shame and isolate and judge and harm, you are doing harm.  By considering only your own interests, you are doing harm.  By leading with your fear and reactionary instincts, instead of using facts and thoughtful consideration, you are doing harm.  By voting for a bully, you are doing harm.

Where did you learn such hatred and violence?

And why don’t you seek to unlearn hatred and violence and, instead, live in love and peace?

Why do you choose to remain the bully?

 

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.

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.

Production

Yesterday I deleted some people from my friends list on Facebook.  This isn’t uncommon, as far as my activities in a normal week might go.  It is uncommon that I have such a visceral reaction to the things people say that get them removed from the list.

These people clearly hit a nerve.  So, I dug into that nerve.  And my digging brought about the realization that they were saying things that I say to myself, and that is why it was so hurtful.  I haven’t talked to these people in years.  They know nothing of my situation, and never bothered to ask about it, but felt incredibly free to judge it, nonetheless.  And they judged not just the situation, but me within the situation.  They were making attacks—entirely unfounded attacks—on my character, and calling me a person who lies and steals.

Why, you might wonder, would I call myself a person who lies and steals?  And I have an answer.  Society.

When you are ill and cannot be “productive” in some hyper-capitalistic sense, you are called lazy and worthless on a pretty regular basis.  And if not called it, then at least made to feel it.  North American society oozes production.  We over produce and we over consume and we are basically a big fat nation that hogs all the stuff and money. And when you don’t buy into the system of making too much and having too much you get all sorts of push-back.  Has anybody been called “granola” or “hippie” for letting go of the idea that we need all the things all the time?  Has anybody been chastised and berated for being too slow at making a latte or typing a document or responding to a text message?  Has anybody been given the side-eye because they ordered a side salad for dinner at the steak house?

We are expected to fall in line and over produce and over consume and to always want more and always be more and never fail or slow or stop.

So, when you cannot play that game, and you sit the bench, you feel the disdain of the whole of your society.  It pours over you.  And you start to feel it inside of you.  And it becomes not the mourning and coping that it ought be—the letting go of expectations and settling into your new truth—but a self-hatred that you never deserved.

Bodies and minds are complex and beautiful.  And because they are such, we don’t always know what they are doing or why.  My rheumatologist said today that I was pretty much stuck in the disabled column “unless they come up with a miracle pill”.  And it would be a miracle pill because they don’t even know what causes my illness, much less how to treat it effectively.  Barring an act of god, I stay this way.  I stay broken and in pain and unproductive.  And I hate that.

To hear someone else say to me the things that swim through my mind.  To have relative strangers and former friends voice those things was hurtful because they were my fears realized.  I am lazy.  I am bad.  I am not enough.

None of those things are true.   Not one.  But I feel like they are because of the way our society treats people who don’t produce in the ways that they deem fit.

I do produce.

I write when I am able, and I create works of art when I am able, and I am trying to learn to sew again, and I have a lovely little rosemary plant that I am growing in my front window.  I also encourage and offer love to my friends and my daughter and my dad.  Sometimes I talk with the neighbors, or send coloring pages to friends.  I often spend time meditating and doing a few yoga poses and listening to or reading material that helps me cope with my illnesses.  I listen to music.  I play with my dog.  I bake cookies once in a while.  I compare theories on racism or feminism or Game of Thrones episodes with friends.

And that is more than enough.  That might even be better than the Almighty Dollar or the shoddy product or the other service I might provide.  If I could make a Big Mac, and not sit and braid a rug when I have the dexterity and energy, would you respect me and value me more?  I hope not.

I mean, I’ve been a fast food worker, and spent much of my life working in the service industry, so I am in no way belittling the people who make your Big Mac.  They deserve a thousand times more money and respect than they are currently receiving.  But, what are the parameters for successful production?  And who made them?

I’m choosing to reject them, no matter who made the parameters or what they are.  I am enough as a disabled woman working her hardest to make ends meet and to jump through all the ridiculous hoops the state demands of me in order to get the benefits that are legally and rightfully mine through the Social Security Administration.  And if that isn’t enough for you, then maybe you need to evaluate how you value people, and not evaluate what I do or don’t do with my time.

It isn’t like I break into your house and judge your parenting or cooking skill.  And if you asked me to mail a letter on your behalf, I wouldn’t assume it was acceptable to judge all the areas of your life because you asked for one thing from me.  And why would it be okay for you to put a spotlight on all the areas of my life because I ask you for one thing?  Is it because that thing is money?

If that thing being money makes the difference, then you value money more than you value lives.  If asking for a favor and asking for money are on two completely different planes, in your estimation, then you serve money, and not humanity.  Because if you would pick up some milk for me, but not give me five dollars, you are placing undue value on the dollars.  Of the two, five dollars is probably worth less than the favor, if you factor in the price of gas, the price of milk, and the value of your time.

I’m currently listening to a song that has lyrics that repeat, “Have you ever lost every part of yourself?”  And this resonates with me, because becoming disabled felt like losing every part of myself.  I can’t do what I once did.  My mind isn’t the same.  My body isn’t the same.  My capabilities and skills and gifts and occupations and expectations all came to a grinding halt.  I lost everything I was, in some sense.

Until I realized, and people reminded me, that I didn’t lose all.  I still have my sense of humor and my fabulous snarky sarcasm and my beautiful eyes and that face that always shows what I am thinking (even when I want to conceal what I am thinking) and my love for humanity and my passion for justice and my artistic spirit and my love of music and the power of Wonder Woman as my guiding light.  I am still me, but I produce at a slower rate than I once did.  And this is only problematic if I keep buying into the idea that my value is directly correlated with my rate of production.

No person’s value should ever be directly correlated with their rate of production.  Not ever.

So, these people who are no longer on my friend list did me a favor.  They reminded me of who I am and what I am capable of, instead of keeping me stuck in a place where I was focused on my own lack of production and means of production.  They shook me out of the place where I valued myself only as the hyper-capitalist society valued me, and brought me back to the peace of knowing who I am, and valuing myself as a human, and not as a mode of production.

Would it not be incredibly transformative for each of us to have someone push us into that knowing and that valuing of the self?  What if the people working 65 hours knew that they would be just as cared for and valued if they worked 32 hours?  They would likely all choose the 32.  What if we all believed that our passions were worth living out, instead of things relegated to the spare room or the moments when we finally retire from the 9 to 5 production race?  How many people would be writing a concerto instead of punching a time clock?

What would happen if we all looked at ourselves and one another through a lens that included valuation based on humanity and joy and kindness and love and passion and friendship and interest and curiosity and so on and so forth, instead of one that valued only production, and subsequent dollars?  I would LOVE living in that world—and not just because it would mean I struggled less with seeing my disability as a failure of humanity, but because the whole world would be filled with good and love and joy, not stuff.  I would much rather have the love and the joy and the good than the stuff.

So, I am not deficient.  I am actually less so than those who would judge my inability to produce as a marker of deceit and theft. Because I value humanity above productivity.  I look at people and see people, not burdens or benefits.

How do you see people?  Do you see them at all, or are you too busy trying to prove your own productivity?  Take a breath.  Let it go.  And look deeper.

You are not the sum of your production.

You are a person.

And you are valuable.

Wealth

I won $25 in the form of an Amazon gift code.  I feel rich.

Just kidding.  I am still super poor, but I wanted to make the point here that most people could lose $25 and not be terribly upset by the loss, while for me it feels like frigging Christmas wrapped in the lottery to gain $25.

Wealth is both relative and not relative.  I have far more than someone living in a hut in the jungle in South America, perhaps, monetarily speaking.  But I also have far less than most people living in North America, monetarily speaking.  So that makes it relative in nature.  But there are really easily applied formulas for figuring out what it costs to live in a particular place, and being from North America, and having no income, I rest way down at the very bottom of the poverty scale.  There isn’t anything relative about that.  I can’t be considered wealthy based on the conditions in which I live. And, frankly, I can’t afford to move to a hut in South America either, so I am stuck within those conditions, and my situation would likely not change were I to live elsewhere in the United States. (Canada is a whole other, and I dare say better, story than here. But I don’t think they give you a visa to utilize better social programs.  They probably prefer people emigrate with useful skills, not disability status.)

So, if we understand that I am stuck where I am physically and financially, we can also understand that I don’t have monetary wealth.  And that presents challenges that I often never considered.

There was a commercial on today for ADT security service that said something along the lines of “even in your nice neighborhood”.  And I was taken aback as a person whose neighborhood would rarely, if ever, be considered nice.  Are they specifically marketing to people in “nice” neighborhoods?  What defines nice?  Who thinks that bad things can’t happen in their neighborhood, even if it fits the criteria set forth for one that is nice?  And aren’t there enough neighborhoods that are not meeting the nice criteria for ADT to make plenty of money?  I know my building has an alarm system on every floor, even though there are no less than four deadbolts between the street and my apartment from any entrance. And it began to sink in that what nice means is a neighborhood with wealth.

Wealth, with regard to neighborhood safety, is also relative and not relative.  There are far more shootings in the south side and west side neighborhoods of Chicago than in other areas, and these neighborhoods are also those that have the most poor households. (We will ignore for the moment that they also have the most people of color—or, rather, are composed almost solely of people of color.) It would seem that money equates with safety.  But when we look closer, and assess types of crime, there are far fewer home invasions in my area on the west side than in wealthier areas.  Nobody wants my not techie, super-old, very cheap electronics, or my Salvation Army furniture.  I’m relatively safe, in that regard.  I’m also relatively safe because my block is filled with families who own their homes and take pride in being good, Christian people, so they either don’t participate in criminal activity, or do so quietly and without drama and violence.  (The neighbor lady sits out back and smokes weed every nice evening, for instance, but she isn’t dealing in heroin and guns.)  So, being impoverished doesn’t necessarily mean you are unsafe, in a relative sense.  But, there is also the issue of extreme poverty—the kind that leads to homelessness, prostitution, hunger, and the like.  This poverty makes you very unsafe.  Have you ever wondered why many homeless sleep in public parks during the day?  It is because sleeping alone in the dark corners of the city is very dangerous, especially for women or children.  The elements are dangerous.  The alternate economies, like selling drugs or your body, are dangerous.  There is no safety in extreme poverty.  This is not relative.  It is simply the truth.

And lately I sit on the precipice of this extreme sort of poverty.

I’ve learned to live in the burden of the relative poverty and the relative safety without too much difficulty.  There were a few years between an innocent youth and aware adult that included sex and drugs and homelessness, and that I do not regret, because it taught me the truth.  It made me know, beyond any uncertainty, that extreme poverty should never be, because you cannot be in it without being in constant danger.  I was in constant danger during those years.  Those years broke me, and started the process of rebuilding me anew.

What I lived then, I never wanted another human being to experience.  I never wanted another human being to choose sex with a stranger over possibly freezing to death in the car.  I never wanted another human being to steal tampons or soap from Walmart, because there wasn’t another way to get them.  I never wanted another human being to learn the schedule upon which the McDonald’s dumpster received uneaten burgers from the previous shift, still slightly warm and wrapped in their lovely papers inside that plastic garbage bag, and ready for consumption.  I never wanted another human being to sleep with an aerosol hairspray and a lighter at the ready, to create an instant blow torch to the face of any who might attack in the night.  Nobody should ever live that way.

I moved from the extreme poverty to the relative poverty category when I had a child.  Then you got all the wealth–$361 of wealth every month!  It was like a heaven.  A heaven where you had to decide between socks and diapers, or medicine and transportation, or tampons and toilet paper.  A heaven where I would unroll all the toilet paper from the church bathroom stall into my purse every Sunday.  A heaven where my daughter missed the 1st grade class trip because I couldn’t come up with $6.  A heaven where I cried myself to sleep at midnight and then got up at five in the morning to do my own homework before I had to wake my daughter for school.

That heaven, sadly, is gone.  I’m no longer eligible for more student loans, and I haven’t qualified for TANF since my daughter was five, and while I do get food stamps and a housing voucher, I don’t get any other assistance.  My light bill and my gas bill and my phone bill and my medications not covered by insurance and my clothes and my toilet paper and a haircut and soap and laundry detergent and whatever else I need, that comes from nowhere.  I’ve maxed out my credit cards and borrowed all that I was able from family, and now there is nothing.  Now it is over.  Now I stare at that space between here and sleeping with aerosol and lighters, and I see it narrowing, and I am afraid.  Can I survive on the street now?  No.  I wouldn’t make it a week out in the elements.  Would it come to that?  I don’t know.

What I do know is that nobody on this planet, and certainly nobody in the United States, should see $25 as wealth when others wouldn’t notice if it went missing.

When I was younger, I had these friends who would take checks out of their mom’s checkbook and forge her signature and go out to eat and such.  They would take my relative poverty butt along for the ride.  I don’t think their mom ever noticed that they were essentially stealing her money, or she, at least, didn’t care and simply allowed them to continue the practice.  Either way, it was a huge departure from the way I lived.  I could not imagine a world where every penny was accounted for in the budget weeks before any income was expected.  I could not imagine a world where money could just leave your bank account without you freaking the fuck out and tracking down the evil person who took it.  I could not imagine wealth.

I still can’t.

I have friends who I would consider wealthy, and relatives that I would consider wealthy, so I see wealth and have been close to wealth, but my own mind doesn’t know wealth.  It only knows scarcity.  And when you only know scarcity, it is extremely difficult to comprehend or imagine wealth.

I do strange things out of scarcity and the fear of scarcity.  I save bottles of product that are clearly empty, just in case I can somehow get more out, by pressing on the pump a thousand times, or turning it upside down and banging it on a hard surface, or by adding some water to dilute the product and potentially get at least partial benefit from the watery substance that is left.  I keep clothes with holes and things that don’t fit, just in case there is never a way to replace what is in my closet with something else.  I imagine everything needs to be saved and kept, albeit neatly, in the closet.  I accept things from others that I would never choose for myself.  I always take home leftovers, even if I didn’t like the food the first time and know I won’t eat them.  It just seems like I always need to be prepared for a period where I am destitute.  That day seems moments away.  Always.

The stress on my body and mind from believing in this destitute day and my needed readiness must be outrageous.  It is no wonder that people in poverty have shorter life spans.  Stress alone is killing us, never mind exposure or illness or starvation or infection or assault.

I should feel wealth, and not scarcity.  We all should feel wealth and not scarcity.

The other day on the bus I recognized a voice.  It was a man I had spent some time talking with on the bus a year or so ago.  I remembered this interaction vividly, because he was a pianist and a piano teacher, and also homeless.  My mother was a piano teacher and a pianist, so we connected on that topic and he began telling me all sorts of stories about his days as a professional musician.  He traveled to places exotic and new and he performed in all sorts of famous or glamorous or beautiful venues, but people gawked and made scowling faces as I spoke with him about his wealth of experience, because it was obvious that he now had no monetary wealth to speak of.  I heard him telling a woman next to him that he was a piano teacher, and immediately was taken back to the memory of him and our lovely conversation.  I looked over, and I hardly recognized him.  He had the same glasses and the same torn pants, he still had a jacket too light for the weather and curly blonde/gray hair sticking out in all directions, but he had lost maybe 70 pounds and he looked gaunt and ashen about the face, instead of plump and rosy as he had been the day I first met him.  Tears formed in the corners of my eyes and I looked away, putting on my headphones and immersing myself in something other than the empty feeling in my gut.  He had slipped down the slope into extreme poverty.  He is dying.  Slowly, but with certainty, he is dying.  And he reminded me once more of my mother, and the frailty she showed as her body slipped into death.  All the wealth this man possessed was leaving him.  But it should not have been.  That history, that life, that wealth of experience should have been valued and respected and honored.  It wasn’t, because he was poor and homeless.

I deserve to feel my own wealth, for once.  I should be allowed to feel the wealth of knowledge and intellect I possess, and the giftedness of an artist and a writer and a poet, and the depth and the breadth of a life lived with fire and passion and play and purpose.  I rarely feel that wealth.  I never feel that wealth without doing so deliberately.  Because the poverty pushes out all else.  The monetary scarcity—the lack of financial resources—overwhelms any other wealth that we might possess, and leaves us bathed in insecurities and unable to promote our strength.  It strips us of the goodness and leaves us only the worries of never having—never being—enough.

So, today I won $25.  And all of this came out of that little Amazon gift card.  All of this was the result of that one moment, when I declared that I am rich, even when I know that I am clinging to relative poverty with every cell in my body right now.  Even though I know it is a lie.  Even though I believe in scarcity, when I wish beyond all telling that I could trust in abundance.  I don’t.  I don’t know abundance anymore.  Maybe I never did.  And maybe I will go the way of my pianist friend, slowly losing life to homelessness and hunger once more, or maybe I will go the way of others, and win the lottery or write a best-seller or start a business and have millions to spend.  But, somehow, I think that I might always be stuck in this pattern of thinking, no matter which way I go.  Because being poor has become a part of me, and fighting to survive is the only fight I know, and scarcity has been my reality for so long that I don’t know that I could ever believe that it won’t be stripped from me, and that my true, scarce self will be exposed for all to see.

I find that really sad and terrible.  And I do not have a beautiful expression with which to leave you, and a happy ending to this post.  Because this is me thinking aloud and finding the truth in my own post, not me solving the problem to make you feel better.  And, maybe you are a person who would benefit from sitting in this space with me, and acknowledging that the solution isn’t evident.  Maybe sitting in my scarcity will help you see your own abundance, or maybe sitting in my scarcity will give you comfort that you are not the only one, or maybe sitting in my scarcity will inspire you to become passionate about sharing abundance and honoring wealth not monetary in nature.  I don’t know.

All I can say for certain right now is that I am really excited to spend my $25.  Now, should I buy socks or medicine?

Edits

It is a weird process that I am embarking upon this winter.  I have decided to purge.

I am cleaning out closets, slowly but surely, and getting rid of things that are not used or that don’t fit.  I’m looking through my home and my life and my psyche and trying to let go of whatever doesn’t spark joy.  Frankly, if I don’t love it, it needs to go.

And the hardest part of this process is not letting go of those fabulous quilted boots I have been wearing and wearing out for the past three years, but letting go of my expectations for my life.

You see, the closets aren’t the only project.  I have been cleaning my office in little increments for the past month or so, and much of that work has been centered around clearing out boxes of files.  Once upon a time, we used paper to hand in assignments and take notes.  And that time left me with stack upon stack upon stack of paper.

It is more of an annoying task than a strenuous one.  I just need to pick up the file and flip through the pages and determine whether to keep or toss the papers within.  And the criteria of “love it, use it, or lose it” should help me to easily make such determinations.  I obviously haven’t used this paper in years, and I likely won’t use any of it again.

But I love this paper.

I shudder a bit at even making that statement, but it is an expression that I cannot get around.  I don’t love the actual pieces of paper, of course.  I love some of the ideas on the pages.  But that isn’t why I have kept them.  I have kept them because I thought I would use them in my future.  I believed that these articles and notes on theology and philosophy and psychology would be useful when I became a professor, or a writer of groundbreaking new concepts, or a preacher.  And today I am dealing with the fact that my belief was wrong.  I am not and will not be those things.  Those things take energy and capability and cognition that I do not have.  And sans miracle drugs, I never will.

I am not just throwing away notes and articles.  I am throwing away the goal that ten years of education was meant to bring me toward.  I am throwing away the ideas of my future self that have carried me through the last twenty years.  I am throwing away expectations and dreams and hopes and promises made to myself.  I am throwing away a life.

And I know that I have the opportunity to fashion a new life, based on new dreams and hopes.  But I still have this moment to cope with—this mourning the loss of what I loved and this struggle of having to find myself anew.  Everything I fought to achieve seems lost to me, and that is a difficult realization.

I am keeping some files.  I am holding on to some of my favorite and most transforming and best loved articles and papers.  At some point, maybe I will read them once more, or use them for my current writing projects, or offer them to others who are in need of the knowledge they hold.  Because I am not able to, nor do I wish to, erase the past twenty years of my life.  Those were good years in many ways.  And I don’t think they were wasted.  I learned.  I grew.  I developed my thought.  I opened my mind to new information.  I believed in myself.  I accepted my intelligence.  I embraced diversity.  I became more and better than the person I had been before embarking on years of study.

I have all of that growth and development to hold, even while I let go of the goals I had made during that time.  And that is wonderful.

But today, I am feeling a bit melancholy about the ways that I am having to change my view of myself and my accomplishments and my goals for the future.  It is a loss.  A deep loss. (And I often feel like I have had more than my share of loss already in life.)

It isn’t an easy process, this editing of my life and self.  Edits to my writing seem easy in comparison.  Rearranging my sentence structure is so much less work than rearranging a life.

There is one comfort I have in this process, which is the feng shui principle of making room.  New things can’t enter into your closet, or your office, or your life, if there is not space for them to move into.  So, a minimalist environment opens up all sorts of possibility, where an environment stacked and stuffed with things has no room for more.  I am tossing my past and my previous ideas of myself, but I am opening up room for the new future and the new ideas of myself to come.

And they will come—eventually.

My file boxes are already beginning to fill with clippings and found objects that would go great in an art project.  My bookshelves are filling with coloring books and meditations and fiction.  My blank pages are filling with ideas of who I am and what I might wish to pursue.  My closet is filling with clothes that actually fit over my ass.  My spare room is transforming into a yoga studio.  My mind is becoming a place of peace.  My heart is becoming more open to others.

And I suppose that I can find joy in the fact that I am editing a life—that it is being improved and perfected and changed and made new—and not ending a life.  There is more to this story.  There is more to come.