And the Storm Rages On

It isn’t easy for me to be vulnerable.

I remember a friend from cohort saying to me once that I was very open by not very vulnerable, and I was upset by that statement, because I didn’t think it fair to separate the two out in that manner.  Being honest was, in my mind at that point, being vulnerable.  Now I understand more fully that there is a difference, and that Chris was correct in his assessment.  It is easy for me to tell the truth, and it is hard for me to be open about how that truth can harm me—how exposing the heart of me is different from exposing the facts of my situation.

I was recently quite vulnerable about the financial situation that I find myself in, and the subsequent challenges that my daughter is experiencing.  I let people know how hurt and frustrated and damaged and judged and punished I was feeling as a result of all sorts of things that are far beyond my control.  And I didn’t shy away and rewrite and edit and try to add decorum or lessen the blow of my emotions.

Overall, the response was positive.  I had a few people who commended my authenticity and vulnerability in stating not just the true facts, but the challenge of my own feelings about those facts.

But there was one response that has been eating away at me for days now, and I can’t help but craft some sort of retort.  I won’t start some strange, heated Facebook argument about it, however.  So, instead I want to address it here, and, hopefully, give it a worthy apologetic.

After lamenting that my daughter was forced to drop out of her educational program just 6 weeks prior to graduation due to financial constraints, and noting that my own challenge of being trapped in cycles and systems that keep me in an impoverished state, rather than offer me the chance to thrive—both of which I consider to be rather unique to me in my particular circles of acquaintance and/or influence—I received this comment in reply:

It’s not just you, Christy.  Nor is or (sic) just single income households. The economy is tough and there are a lot of people that I know right now that are struggling to keep the lights on. 

                I’m so sorry. I know what you’re going through when the stress, the anxiety, disability, and desire all meet in the perfect storm.

                I’m praying for you guys…

And under that was a meme that said:

Sometimes God calms the storm.  Sometimes He lets the storm rage and calms His child.

I later texted another friend that I was “Zen as fuck” until I read that comment.

I can’t fully express how upsetting comments like this are for someone in my situation.  The idea that my situation is just like a whole lot of other people’s situations is laughable.  To normalize what is incomprehensibly abnormal as a strategy to deny me aid is not one that is foreign, unfortunately.  People love to rationalize their refusal to help their fellow humans as “reasonable” instead of cruel or evil in all sorts of ways.  And the easiest way to do that is to dehumanize the person in need—using racism, classism, moral relativism, or some other ism to blame the needy for their own struggle.  That dehumanization is much more difficult when you sat beside said person in seminary classes and your child was babysitter to mine, so you resort to the second easiest rationalization—the “lots of people” argument.

“Lots of people” have disabilities and they…

“Lots of people” are divorced and they…

“Lots of people” are having financial challenges.  “Lots of people” have anxiety.  “Lots of people” want life to be different than it is.  “Lots of people” struggle.

All of this is true.  So, in the mind of the one arguing for the many, the one is simply an exaggeration of or a dramatic expression of what all sorts of people are dealing with.  They “understand”.  They “sympathize”.

Bullshit.

I call bullshit.

And I get to call it because of this ugly feeling in the core of my being whenever I get to read these sorts of comments under my vulnerable posts.

Ironically, just above this comment was a series of comments and replies that talked about how I hate to open up because of the times that I opened wide my arms for a hug and got a gut punch instead.  This “lots of people” comment is a gut punch where there should be an embrace.  And I will tell you why this feels like a gut punch.

My vulnerability is not something that is shared by lots of people.  It is an intimate thing, to share my heart and my deepest wounds and fears.  To say that lots of people are touched in the same way—even if it were true—is a betrayal of my trust.  This comment is akin to a friend confiding in you that they were raped, and you saying, “Lots of people get raped.  I know what you’re going through.  Sometimes you need to let go of shit and let God change your perspective.”

Gut fucking punched.

I’m deeply involved in all sorts of methods for changing my perspective, by the way.  I meditate almost every day.  I practice yoga.  I practice gratitude daily.  I use several mindfulness practices, and I have all sorts of routines in place to keep my heart open, my outlook positive, and my disordered thinking in check.  When I said that I was Zen, I meant it.  I could not have been calmer when I received that offending comment.  And I addressed it in the calmest manner possible:  I ignored it.  I talked to a close friend about how it made me feel, and she supported me through the event and helped me to keep a positive perspective throughout the situation.

So, even after being gut punched by the insensitive rationalizing comment, I kept my cool demeanor.  I didn’t need “God to calm his child”.

But the storm is another story.

The storm should NEVER have been here in the first place, and yet it rages on.

This common little meme, and the saying upon it, are very upsetting for me.  They assume that the things in life that harm us are somehow meant to be hanging around our heads so that God can teach us some sort of lesson in how to keep our cool under pressure.  And I don’t understand where that idea comes from, but it is a terrible sentiment, and we need to put an end to it.

My challenges stem from disabling conditions, yes.  And those disabling conditions might never go away or be cured.  I understand that a certain amount of coping is required for me to navigate life with those conditions.  In that sense, there with always be challenges.

But “the storm” for so many of us can simply go away if people stop using the rationale to avoid helping one another and affect change.

My storm includes a system that doesn’t fully support those in our society who have disability, and only offers me $750 in cash and $15 in food benefits, plus a housing stipend.  Adding those together doesn’t make a livable situation, and I am constantly in need and constantly in danger of losing my home, starving, not having my medications, or some other disastrous challenge.

My storm also includes the challenge of mental illness that has been present since early childhood, and which left untreated for so long has influenced my life in countless ways, making it impossible to consider any decision I’ve ever made one that wasn’t made under duress, and challenging me to figure out who the hell I am, and why.  I don’t need a midlife crisis, because I’ve never had an independent identity—my crisis is ongoing.

My storm includes a divorce from a horrible man, whose damage to my person and my psyche cannot and should not be downplayed, for any reason.  And that also means an absent father is a part of my daughter’s storm—and the storms of our children influence our own storms.  The weight of being a single parent goes far beyond “single income” households—and I’ve generally had a no income household, because of my difficulty with employment due to PTSD.  Having a completely absent parent, who contributes in NO way, is not anything that a person who lives in a two-parent home can ever imagine.  It still infuriates me when married people say things like, “I’m a single parent for the week”, when their partner is away on a trip or something.  Having a partner who is physically absent for a matter of days is nothing like having no partner at all.  You still have all sorts of support, financial and emotional just being the tip of the iceberg.  You can’t imagine none of that being present, ever.

My storm includes debt totaling over $250,000.  Most of that is from student loans, and much of the rest is due to the three years’ time that I spent waiting for my disability claim to be approved.  I was unable to work and waiting for the Social Security Administration to look at the body of proof that I was unable to work and sign off on my meager $750 a month payment.  In the meantime, I had nowhere to turn but credit cards, my dad, and charity.  So, I owe far more than I could ever pay back on my own, but I am not eligible for programs that would forgive these debts.  So, I sit and owe, and the interest just increases the amounts and increases the amounts.

My storm includes the complicated situation where my adult daughter cannot be considered an independent student, according to the rules of the government, but I cannot claim her as a dependent, according to the rules of the government.  This leaves her with a shortfall that other students don’t need to deal with regarding their own financial aid.  She can’t take out more money, but I can’t take out money on her behalf.  Because she is in this weird limbo state, because I am a disabled individual.  This isn’t her fault.  This should not be a storm she needs to weather, because I should be able to provide for her.  But I can’t.

So, my storm also includes the constant feeling of guilt because I cannot offer my daughter enough to put her in a position where she is on equal footing with her peers.  She isn’t set up for success.  She doesn’t have the advantages that her cousins and her friends and the children of the commenter on my post have.  I can’t offer her a chance at starting out at zero sum and working her way up from there.  She starts with my handicap.  She starts at the back of the pack, because I can’t give her an education and rent money and clothing and food and care packages and enough love to make up for the losses that she has suffered and the abandonment that she has felt.  I have loved her fiercely.  I have done and continue to do all that I can.  But it will never feel like enough.

My storm includes shame.  So much shame.  Not being a pure virgin girl, and not knowing how to stop being abused, and not understanding what that abuse even was or meant.  The shame of hiding and the shame of secrets and the shame of difference.  My storm later became one that was volatile and violent and full of rage—so much rage.  I felt like I was the storm, or like the storm lived somewhere deep within me and it was trying to get out and I was desperate to hold it in—failing to hold it in.  And then the storm became the shame of promiscuity and feeling like all of those words that are used to keep women captive—whore, slut, bitch—were the only thing that I could be, tainted that I was.  And it felt good to be used in a sense, until it was over, and then the dissociative state wore away and the wave of shame washed over again and I started holding in the storm again, as long as I could … until the next time.

My storm includes being all the people that you could rationalize away as not quite human.  Homeless.  Addicted.  Divorced.  Unemployed.  Mentally ill.  Using my body as currency.  Shielding my body from blows and then crawling into bed next to the one who wielded them.  Perpetually single.  Having sex with partners that were not my husband.  Having sex with partners who were not men.  The girl who stays out too late.  The girl who mows her lawn on Sunday.  (Oh, yes.  Some people consider that a grievous offense!)  I received anonymous notes about my bad behavior.  I was told I could lose my scholarship for having sex.  I got dirty, side-eyed looks from others.  When I talked to your husbands after church, you would suddenly appear at their sides and pull them in a different direction—like talking to me would lead to me stealing them away to mow lawns and suck on body parts by sundown.  In truth, I was just interesting and unconstrained by convention.  It’s an attractive thing to be interesting and unconventional.  (Translation:  read some books not written by female bible study developers and then discuss the contents with your husband … he’ll be mowing your lawn in no time.)

So, my storm also included years and years and years of not having my needs met. Hence the comments about opening my arms for a hug and getting a gut punch.

I’m still not surprised when I open myself up and somebody hits me hard, instead of offering me love and support.  Unfortunately, it is what I have come to expect.

The dumb thing about that meme is that you don’t have to tell me that the storm might not go away.  I fully expect that storm to fucking tear me to pieces and kill me.  It takes weekly therapy, twenty drugs, a host of friends, and all sorts of self-care strategies to convince me that the storm can be survived.  It takes every ounce of energy I can muster to get up in the morning and face the storm again.  It takes all manner of strategies to be my Zen self in the midst of all this chaos and terror and shame and unmet need.  But I do it.  I do it day after day after day.

I keep on facing it.

And some days the storm wins a little, and I freak out on a new potential partner with a host of doubt and shame and fear.  Other days I wake up and counter that with a bit more of the Zen and apologize and open up and tell him why I reacted that way, hoping that he will meet my need and connect with what I am saying … and not gut punch me while my arms are open.

But I face it.

And your job, as the people who would support me, is not to remind me that there is this big, ugly, terrifying storm that I am working so hard to live in the midst of without losing my shit.  Your job is to do everything that you are able to make that storm disappear.  Your job is to offer support where there wasn’t any.  Your job is to accept me and not shame me.  Your job is to love and not harm me.  Your job is to prove that the storm isn’t going to win, and that we can make all of that crap go away by being better than the crap.  We can change and grow and not hurt one another anymore and counter the falsehood with truth and slay the dragon of cruelty with a sword of kindness and acceptance and love.

That is the only way I know how to continue to face the storm—by trusting that we can eventually find calm skies for everyone.  Without that assurance, facing it is a worthless effort, and I may as well off myself now.  (That isn’t a suicidal statement, fyi.  That is me drawing on the extreme to make a point.)  Because if there isn’t an end to the need and the shame there isn’t really a point in moving forward.  And I don’t mean just the money—I mean the need for understanding and connection and love.  But I define love as “meeting needs”, so the money is a part of the equation.

If you are to assist another, you need to do more than tell them that there is struggle all around them and to work on their perspective.  You need to work to end the struggle.  Because no matter what your perspective is, if the struggle persists, you aren’t doing what you should be doing.  You aren’t helping.

I know that standing up against the storm isn’t an easy thing.  It is much easier to say, “Check your perspective” or to hide in some shelter and hope that the storm passes.  But for many of us—and for me—the storm rages on, indefinitely.  And that storm can’t stop.  It won’t stop without the change of perspective from many other people who are not me.

It is often not the people suffering, but those who are unaware of or those who are causing the suffering who need to change the way that they are operating in the day to day.  I’m usually not the one doing things “wrong”.  I’m generally suffering because of the things that are unjust, not the things that I cannot accept but that are perfectly fine.  And the ones suffering an injustice generally don’t have any power to make the change required to stop that suffering.  If they did, the change would happen hastily and without resistance.  Because, despite the lies that many in power like to feed you, people don’t wallow in poverty and addiction and illness and homelessness and sex work because they want to.  Just like Kanye West is an idiot for presuming that slavery was/is a choice, anyone who thinks that people live in the middle of storms because they like how lightning feels is an idiot.  Those people don’t have the shelter they need.  You must find ways to provide it for them—preferably by asking them how you can best provide them shelter.

Robert F Kennedy once said:

Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest walls of oppression and resistance.

This is the type of shelter-building act that we need in response to those who are in the middle of storms opening their hearts and asking for assistance.  Building currents that sweep down walls—sweeping away the clouds of the storm and bringing, perhaps for the first time, calm, blue skies, should be the goal that we aspire to reach.  Asking people to be quiet and calm in the middle of injustice is not the answer.  Fighting against injustice is the answer, on the grand scale.

And meeting me in my storm, with open arms and an embrace—not a gut-punching meme that seeks to discredit my need, devalue my expression, and normalize an injustice.

When you are met with someone who opens up and seeks to be authentic and disclose their struggle, don’t tell them to sit quietly in chaos, please.  Don’t ask them to be happier with the injustice that swirls around them.  Act to improve their lot.  Strike out against injustice.  Send forth that ripple of hope.

And if you won’t do all those good things, at least stop sending gut punches.

 

Contribute to Christy’s fundraiser here if you wish to help lessen her storm’s raging.  Thank you!

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The Song that Never Ends

I feel like shit.

I could probably end there, and just let that be my post for the day.

But I keep putting “write” on the schedule that I don’t follow.  I’d kind of like to cross that off my list.

So, I feel like shit.

And that isn’t a new thing at all.  Which is why the song that never ends seemed appropriate as a title for this post.  I say this all the time, because I feel this all the time.

Last week I was diagnosed with bronchitis.  It is a blow to the body and to the psyche to have bronchitis.  I’m getting to the point where I think that living in a bubble might be preferable to being exposed to the outside world.  And by outside world, I don’t just mean dirty places or contagious people, but literally all of the world outside my apartment.

Environmental allergies.

Dust and mold, for starters.

I’ve been treated every which way—including the much debated and often frowned upon NAET treatments that a person desperate to stop being sick will try–because that person would try almost anything to stop reacting to things and becoming violently ill.

And bronchitis is violent.

My whole body aches from the depth of the cough, which makes the muscles that you never think about or concern yourself with spasm and become pained and fatigued.  There are times that I end up on the floor after a particularly brutal coughing fit.  I double over, hoping that somehow that will reduce the struggle and help me find air.  I’m not sure that it helps.  But I am sure that it seems like the only action one can take to combat the effects of the onslaught.  Double over and gasp for air—it seems the only natural resistance.

I don’t intend to whine about my situation here.  It comes out that way at times.  And some days I do wish for the slightest validation of my suffering, because it deserves to be recognized.  I deserve to be recognized.  But today is not one of those days.

Today is simply the day that I keep saying what I am always saying—that I feel like shit.

If you know me well, you have been around that feeling for a long time now.  If you don’t know me well, you still have easy access to the information.  It is obvious from what I say and do and write that I am suffering more often than I am not.

And I think that it must get really boring and annoying and redundant and frustrating to hear me complain time after time that I feel like shit.  It must be tiring.  It must suck.

It is a really stupid thing to feel, but I feel guilty for being sick.  I feel guilty for burdening others.  I feel guilty for not showing up and not participating.  I feel guilty for going along and placing limits on what we can or cannot do while we are out.  I feel guilty for offering the truth of my situation as a part of our conversation.  I feel guilty for having nothing more fabulous and exciting to discuss.  I feel guilty as I see the eyes of those across the table shift from attentive to numb and indifferent while I explain my newest challenge, or offer details of my situation.

I get it.

It is the song that never ends.

I always talk about sickness and disability and poverty and medical care and socio-economic patterns and the evils of capitalism and the failures of our systems.  And most of that is hard to hear, and even harder to want to engage with any sort of energy.  Because it sucks.

There are not a lot of people I know who feel that they are in a place where they will always remain.  I don’t mean a physical space, necessarily, but a situation that they will never have an opportunity to change.

Most of us—most of you—get to change at will.  Change careers.  Change partners.  Change clothes.  Change perspective.  Change schedules.  Change environments.

And that change might not always be easy, but it is possible.

My never-ending song/story is such because the possibility of change at will has been stripped away.

You want to believe that isn’t the case.  You want to argue that I can still make choices.  And I can still make choices; but I never get to make a choice that isn’t influenced by my disabilities.  Everything revolves around that illness.  Each step that I take considers that, first and foremost.  It dictates all the things, all the time.

I feel like shit.  And that determines everything else about my day, my week, my month, and my life.  A bad day can quickly avalanche its way into a bad year.  It is even determining the words that I type right now.  I keep thinking that I am no longer making sense, and that I have lost the point that I was seeking to make.  I don’t feel well enough to concentrate.  My chest hurts.  I can’t breathe.  My hands are shaking.  I’m queasy and light-headed.  My stomach has that flu-like feeling that can only be described as “yucky”.  My toes are suffering what feels like being stabbed.  My head feels full of cotton and not brain matter.

And I am not going to stop feeling like this.

I will stop feeling it for a while.  It won’t always be this bad.  But it will always be.

I will always be at risk, afraid of the environment and its effects on me, feel guilt about the social implications of my illness, suffer the pain and frustration and challenge of my disability, struggle to find the words to express my life story without making it sound pathetic and desperate and sad, and waiting for the next time I feel like shit.

Yes, this song doesn’t end.  Yes, I will always be talking about my physical and mental health.  Yes, I will always have bad days.  Yes, I will always share my experience with honesty, and show the bad alongside the good.

Today there isn’t a whole lot of good.  Today is mostly bad.

But to be in my life, you need to be okay with a life that is mostly bad.  You need to let this song be sung, and maybe even sing along.  You need to accept my disability and disease as a part of who I am and what I am and where I am.  And you need to know that will never change.  If you can’t handle that, then you don’t belong in my life.

That sounds harsh, I know.  But my life is harsh.  And I need to be honest about that.

I’ve recently said that I will no longer keep the secrets of others, to my detriment.  And part of letting those secrets be freed is accepting that there is a lot of pain and suffering that will also be unleashed.  So, the bad days might increase.

I’ve opened the box, Pandora.  And the chaos that comes out isn’t something that can be controlled.  I can’t plan for the ways that affects my person, my situation, my family, my friends, or my life.  I can only wade through the waters, not stop the flood.

“Will I lose my dignity? Will someone care?  Will I wake tomorrow, from this nightmare?”

A line from a song in the musical RENT seems to echo what I am currently feeling.  But the last question has already been answered for me, and for the characters in the show.  We won’t wake from the nightmare.  The bad stuff—the feeling like shit—is still going to be here tomorrow and the next day, and the next.

But the question of my dignity and the question of the others who may or may not care remain.

Can you love a person who is always “deficient” in some way?  Can you care about someone who has no foreseeable economic gains?  Can you respect someone who doesn’t have a “normal”, professional career?  Can you accept a friend or partner who has obvious limitations?  Can you live in the space where the never-ending song plays on?

I must live in that space.  I don’t have an option.  I can’t leave my limits and challenges behind.  They come on the journey.  They stay packed in my baggage and carried along.  They are a part of my life—a part of me.  So, when the never-ending statement, “I feel like shit”, comes along, how will you address it?  How can you best interact with it?  How can you cope?

You can do as I do.  You can honor and validate and give heed to the struggle.  And by so doing, you offer grace and peace and confidence and trust and understanding that transforms.  The song will still be the same, but it is made more beautiful by the harmonies of a choir.

Joining in the honest acknowledgment of my limitations, and knowing that they are not the whole of me, but a valid and important part changes the score.

It transforms pain into beauty.

It makes beautiful music.

 

Full House

When I was younger, I found myself in situations that were uncommon for most of the people I knew.  One such situation was that of being accused of harboring a runaway, and spending time “on the streets” and “on the run”.

A lot of people find this shocking when they hear about it for the first time.  It isn’t much of a secret, really—just one chapter in a storied past.  But I am a clear-headed, responsible, problem-solver when I am not suffering the effects of illness, and being on the run with fugitives seems really far from where I am in life now, or from my early years, so anyone who didn’t experience that unconventional middle, exhibits surprise when I candidly offer this as a part of my life no more or less affecting than any other part of the story.  In fact, while there were many terrible things happening around me during that period of time, some of my fondest memories also come from that time.

One of those memories is of a household that took me in.  I can’t even recall any of their names right now.  Maybe it will come to me at some point as I write.  But a couple, with a handful of kids of their own, took to “adopting” strays.  I was one of those strays.

Life in that household was strange and hard and fantastic.  You had to work to earn your keep.  As one of only three females in the home, I was tasked with cooking, cleaning, and generally working to keep the men-folk on their way to and from jobs that paid actual cash.  I took to calling the lot of young men my brothers and the one younger girl my sister.  And when the work was done and the bellies were filled, the fun came.  We used to sit around the gigantic dining table that couldn’t fit all of us around it.  We would crowd in.  Sometimes with me on the lap of the boy whom I had followed to this remote place, to reduce the number of chairs and the amount of elbow smacking that happens when too many bodies are in too small a space.  We would spend the evenings or the weekend afternoons playing penny poker.

I had never played poker until then.  And I wasn’t very good at it.  I’m still not.  But that didn’t matter much.  I started to pick up the lingo and would eventually be ready to call out the game as I dealt the hands.  I remember I had a fascination with one-eyed Jacks, so they would often enter into the picture whenever it was my deal.  And while I could tell them what we were going to play, the winning was not a thing I did often.

After I left that home, I don’t think I played poker again.  Not because the memories were not fond.  They were.  But because I really suck at poker.  It may have something to do with what my friend Scott once commented on—he said he liked preaching with me in his audience, because you could always tell by my face exactly what I thought of what he was saying.  I don’t have a poker face.  I have a lot of expressions, and I’m not all that good at hiding one with another.

When I left that home, it was because I left that beautiful bronze-bodied boy whose lap I used to inhabit.  And I didn’t feel bad about leaving him behind.  I had followed him there because, to my mind, he was a shelter during a time when being alone was dark and dangerous.  When I left, it was because I had been reminded of what true shelter should be.

A home filled with love and grace and acceptance was what I entered when I followed that boy to God-knows-where, Hickville, population 15.  And it was far from perfect.  Sharing bath water and cleaning up after a host of teenagers and sweating in the summer heat were not the moments that I longed for.  But being part of this rag-tag “family” helped me know what living without judgements looked like.

And that wasn’t something that my own family or my own community had been, growing up.  We were all about keeping up the appearances and judging the flaws and the failures.  My dad never really got caught up in that judgment, which is part of why we remained relatively close even in the times when I wanted to be far from and unconcerned with my biological family.  But he was the exception to a well-known rule.

When I was later married (to an entirely different body), I moved back to my hometown.  That marriage was followed by a prompt divorce.  And I felt the weight of that “failure” and the “failure” of being a single parent that followed.  But I didn’t let that burden break me.

Instead, I became that home I had left—the one with the table covered in pennies and the laughs and the love.  The knowledge that half of us in that household were avoiding the police for one reason or another never seemed to be a weight at all.  Failures were not a thing.  Choices happened, and the consequences of those choices happened, but that didn’t affect who we were and how we were viewed by the others.  Those were just choices and consequences.  Not character flaws.

My biological family still hasn’t fully grasped the concept of this love and grace and acceptance, and neither has the small town that we came from.  But there are many more attempts at showing that love and offering that acceptance than there have been in the past, and I am proud of and glad for that progress.

But for some time, my home needed to be that home, and my heart needed to be that heart—the one that wouldn’t hold court and make judgments, the one who accepted even the most “broken” of souls.  So, it was.  And I had more than one runaway girl living in my space, and I sold my wedding dress for pennies on the dollar to a girl whose parents wouldn’t support her marriage, and I fed a host of working men every evening, and I shut the door on a room filled with kids some nights, and I made my home the place where everyone belonged.

Lest you think I am painting myself as a saint, I also bought beer for minors, did a host of drugs, slept with some of those men, and traded off babysitting duty so that I could go out and drink a whole lot on the nights my own child was away.

But that is fine, because this is the home where we accept and love and extend grace.  And that is extended to me, as well as to any and all others.

Last week, my daughter started the slow process of moving back home by the end of the month.  Today, I extended an invitation for her friend to move in with me as well, crashing with my daughter or on the sofa, or the inflatable mattress if she prefers.  So, this household of one dog and one human is expanding once more.  We are becoming a full house.  Three women, one dog, and one to two cats, depending on the way that the situation unfolds.  And we probably won’t play poker. I still suck at poker, and we can’t hoard pennies, because we need to add them together and make them into quarters for the laundry.  We will probably have difficult conversations about the end of relationships and the challenges of the world.  We will probably drink ourselves silly at one point … hopefully, only one.  We will be in tight spaces and won’t get enough sleep and will fight over the bathroom.  But my home remains the place where we accept and love and extend grace.  So, it doesn’t’ matter why life is messy or how messy it is.  And it doesn’t matter how long these girls need to stay or how many times the pets fight or how many mouths there are to feed.  What matters is that there is space here.  There is a place here.

I don’t take in strays so much as just allow community to happen where it will.  I don’t consider the people who come to my door astray.  Many of them are less lost than some of the people in my history and life will ever be.  As my therapist likes to remind me, the family member who wants the status quo to stop being followed is often the healthiest and most honest member.  So, even I am a lot less lost than what you might imagine—especially if you have made a habit of judging me from your small, rural, Iowa town.

While I was conscious of opening my heart and my home, I was also conscious of those around me who would open theirs.  These people, along with What’s-his-name and Debbie (I’m now almost certain that her name was Debbie, and his was a one syllable name, possibly starting with an M?), became my shelter and modelled community in the best of ways.

Jessica, Brenda, Andrew, a bunch of willing babysitters, and Julie as I finished college, and Dave, Nic and Adam, Matt, Jen, and John and Misty in the Arizona years.  Allan and Carol, at various stages, Steph, Rhonda, Sarah, Elessa, a bunch of Postmas, and a handful of others in the small-town years.  My Dad, always, and my Mom, learning over the years and loving me with expressions I could believe and hold onto as she slipped away.  Today, it is my beloved Rayven, Luke and Ted, Erin (the bestie with a hundred besties) and Bryan, Rosie, Matt, Josh and Jessica (still and always), Julie (ever-faithful and loving), Adam (and even more Adam, because he never ceases to understand my heart) and Jackie, and a host of others who pay my bills and hear my cries and hold my hands. And who laugh with me around the table at every available opportunity.  And I keep building and keep adding and keep experiencing community with more and other.

Once you see it, this space where judgment ends and acceptance is whole and hearty, you can’t stop finding it.  You crave that community, in its purest form.  And you offer it as often as you are able.  The best thing in the world, the best part of humanity, the deepest love and the strongest bonds and the greatest truths happen here—in these full houses.

I’ll miss my privacy a little.

But I am so glad that I can still say, “I have a full house.”

Even while I suck at poker.

 

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. 😉

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.

Backward

The last few days I haven’t been able to keep control of my letters.  They keep switching up and making the words I mean to write a jumbled mess.  And this is not figurative in any way.  I’m seriously dyslexic of late.

It isn’t a major issue, since we have these lovely computer checks of our spelling and grammar these days, and the only thing I end up writing with my actual hand and a pen is notes from my online nutrition course, so I should be able to decipher what I meant to write.  But, even without severe consequence, I get annoyed with this trading of letters and destroying of words.

It isn’t that I’m a perfectionist…

Just kidding, I’m totally a perfectionist.

And that hasn’t always served me well in life.  There are many times where I put too much effort and too much stress into a project of some sort, because I had to achieve my own standard of perfection.  And my standard has always been high.

I don’t think I came to be such a perfectionist by accident.  It has been shown that there is a correlation between perfectionism and trauma.  And I grew up with a mother who didn’t allow anyone to settle for less than what she deemed perfect.  Though I constantly disappointed her hopes of perfection, I still adopted some of her desire for all the things to line up perfectly and look neat and clean and good.

I didn’t realize that I was dyslexic until adulthood.  For some reason, even though things were constantly being reversed in my early education, nobody ever diagnosed me with a learning disability.  In adulthood I would also be given the diagnosis of ADHD, which often travels in tandem with dyslexia.  Both have been linked to low DHA and EPA, the omega 3’s from fish, in utero.  So, basically, my mom wasn’t perfect, because she clearly missed out on oily fish while my cells were multiplying and differentiating and doing all the scientific shit that cells do.

Because I wasn’t formally diagnosed with these maladies in childhood, I felt stupid a lot.  I couldn’t meet the standards of perfection.  I kept messing up in the same ways and living in the same mistakes.  I couldn’t pay attention, my desk was a mess, I was terrible at penmanship and spelling, and I kept drawing “b” and “d” either identically, or replacing one with the other.  I was flawed.   I couldn’t get it right.

And doing things “right” was of high importance in our household.  Or at least making them look “right”.

Perfectionism didn’t just apply to my handwriting.  I needed to have perfect hair and perfect clothes and look like a perfect daughter.  But I wasn’t a perfect daughter, so lying about my imperfections became commonplace.  I was always the daughter bouncing around when she should be still.  I was always the daughter who spoke when she was expected to stay silent.  I was always the daughter who would leave when told to stay and stay when asked to leave.  I was belligerent and defiant and not at all the kind of daughter that my mom wanted.  And, until my sister came along, I might have believed that daughters didn’t come in a perfect model.  She was compliant and accommodating and capable of making my mother happy.  I wasn’t.  And I used to envy or despise my sister, depending on the moment, for her ability to be the child that my mother had wished I was.  But I eventually let that go, because it had nothing to do with my sister and everything to do with my mother, and my relationship with her.

I couldn’t be perfect, but I tried, until not living up to the challenge for years and years finally made me give up.  And I gave up in gigantic ways.

My house was a disaster area, and my husband was an asshole, and I was a cursing, loud, obnoxious, addicted, defiant mess.  And it was fabulous.

I became the exact opposite of what my mother wanted me to be, and I stayed that way for some time.

Eventually, I came to see that some of my behavior wasn’t serving me well, so I started to travel from my backward ways and get closer to the ideal daughter.  But, after travelling so far from that ideal, you really don’t come back.  Your experience becomes a part of you. Whether you want it to or not, your history is always a part of your story.  So, I formed my own ideal.  And I started to strive for that ideal instead.

I accepted that I would never be the daughter my mom wished for, but I could be the best possible me imagined.  Right?

Wrong.

I’m an idealist at heart, but pragmatic overall. However, I formed an ideal that I couldn’t live up to.  And I think that all of us do this, on some level.  We imagine a self, and spend so much time and energy living into that perceived self that nothing else matters, and then we cannot meet the standards imagined.  We fail ourselves—not just our mothers.

I didn’t learn the lesson quickly, and spent years struggling with myself, but I have finally seen that I was designed to be backward.  Not in the sense that the divine wished dyslexia upon me, but in the sense that we are all designed to be different from what we expect of ourselves.

I fought to become what I envisioned a good woman to be.  And that vision was based upon what I knew from my history, and upon what I imagined my mother wanted, and upon what I deemed culturally appropriate.  But I am no more culturally appropriate than I am able to keep my letters in the correct order while I write.

So, when I did learn the lesson, and I did discover who and what and why I am, I learned that I am not now, and not ever, going to fit into an imagined ideal me.  That isn’t how development works.

When we are babies, we don’t make a list of things we want to accomplish before we begin to explore the world and start to meet milestones.  We never say, “Hmmm…I think walking might be cool.”  We just engage with our environment in such a way that we eventually discover that walking gets us to places we want to go.  And somehow we have forgotten, by and large, that development happens as exploration happens, and that no amount of wishing for a baby to walk gets them walking, but they do so when it serves them well.

It sounds a bit selfish, but it really isn’t.  Being your best self doesn’t mean adhering to an ideal that constantly lives just outside your grasp, but accepting who you are and what you need in the moment. And while you might imagine that as self-serving, in truth, when you care well for yourself you are set free to care well for others, instead of putting all your energy toward meeting the unachievable ideal.

There are lots of people who still think I live life backward.  They comment about how I should get a job or get more exercise or try this or that home remedy.  They tell me they worry about my choices, because I like both men and women, because I have sex while unmarried, because I am pro-choice, because I live in a ghettoized neighborhood, because I date outside my race, because I am not a biblical literalist …

The list goes on forever.

But the best thing that has happened for me in a very long time is that I stopped caring what those people want Ideal Christy to be like.  I no longer care what my Ideal Christy was.  I have learned to simply live within the Christy that I am.  I accept my beliefs.  I offer gratitude.  I increase my awareness.  I educate myself, and I transform what I can based on new information.  I let go of what I cannot change.  I release expectations and, instead, hold on to who I am at the core—deep in my heart, or my gut.

I don’t need to be perfect.  I just need to be who I am, in the most authentic way possible.

There are many ways that perfectionism still sneaks into my daily life, including my frustration over the order of my written characters, but even that tendency toward perfectionism can be accepted and released in my newfound, mindful approach to living.  And there are still many ways that others view me as failing or a failure that hurt my heart, but those too can be felt and then released.

I spent so much of my life trying to be the perfect daughter, the perfect wife or girlfriend, the perfect mother, the perfect student, the perfect employee.  And all of that was not waste, but much of it was unhelpful.  I don’t need to fit the mold for any perfect ideal.  There is no longer an ideal self.  There is only me, simply being.

And I think that being is better than perfection, without a doubt.

I do waste energy, from time to time, on the things that others desire for me to be.  But, for the most part, I have learned to break free from expectations and to accept myself as I am.  Once the keeping of lists stopped and the toddler-like exploration of self and environment began, it was difficult to revert to the perfectionist striving.  Because exploring self and life is so much more rewarding.  It offers wonder and surprise and enlightenment and new life.  And that is much better than the struggle that perfectionism offers.

I’m becoming proud of the process of becoming.  I’m accepting that I may be any number of things, and some of those things might align with the ideals of others, but others will not.  But those ideals aren’t my goal anymore.  Mindful living is my goal.  And mindful living always offers me good things, and never disappoints.

I understand that this way of being will be considered backward for some.  But those people are probably still striving for a perfectionist ideal that will never be reached.  And I don’t need to care that they see my way of exploring the world and the self and the environment and the world as not “right” in its approach to living.

If loving me is wrong, I don’t want to be right!

Annoyances like transposed letters still frustrate me at moments, but I’m learning to accept even that as a part of who I am.  And I’m learning to accept that I am good, just as I am.  I am “right”, because I am being true to myself and my experience.  I am being true to my heart and my gut.  I am letting me be enough.  I am allowing myself the space to fall and to rise and to be, without judgments.  And something that offers that much love and grace and compassion toward the self, instead of the usual berating and judging of perfectionism, cannot be wrong.

So, since today is not a class day, filled with strangely spelled notes, I will spend it doing that which makes me be, without perfectionist ideals.  Maybe I will do some yoga, or a meditation.  Maybe I will color mandalas, or work on some art pieces, or finally attempt some sewing, or plant some stuff, or take a bath.  And others can think of those things as selfish, if they want.  But I see them for what they are: practices that accept who I am and where I am, practices that lead me to my best self, and practices that never ask me to strive for perfection.

And you might think that such things couldn’t possibly be added to your day, because you are too busy.  But you would be wrong. Because practicing mindfulness strips away the busy, and leaves you with what is most important—it always leaves you with the best possible you.

End your striving.  Stop trying to be perfect.  Let your heart speak to you, and then speak that to others.  Don’t pretend you are something you are not to please your mother (or anyone else, for that matter). Look inward. Be backward.

I promise you won’t be disappointed.

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.