mental illness

And the Storm Rages On

/ christyterese / Leave a comment

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!

Avoidance

/ christyterese / Leave a comment

I’m supposed to be paying bills.

But there isn’t enough money.

So, I am doing this thing that I do.  Some like to call it procrastination, but I’ve started to use terms that are more honest wherever possible, so this thing is called “avoidance”.

When the thing cannot be done comfortably, efficiently, without stress, or with relative ease, I avoid doing the thing.  “Avoidance”.

Right now it is about the bills, because there is stress, discomfort, inefficiency, and a bit of struggle involved in trying to figure out how to make money multiply without a magic wand or the art of alchemy to assist in the task.  I don’t know what to pay and what to leave unpaid.  I don’t know who might be gracious and who might attack the credit score I have been working so hard to improve.  I know that all of the things need to be paid, eventually.  And I know that one way or another, through begging or borrowing or more high interest loans that bury me in even deeper debt, things will be paid, but that doesn’t make the job of maneuvering and managing a too small budget less uncomfortable or less stressful, so I still want to avoid it.

A long overdue blog post is better than an attempt at bill payment … even one that details the stress I feel over the bill payment attempt.

I think that part of this avoidance is built into our DNA.  We didn’t survive as a species by running headlong into danger with great stupidity and zero planning.  We avoid situations that seem like losing scenarios as a matter of survival.  Avoidance helps us stay alive, in many ways, so it can be an excellent mechanism for the continuance of the human race—which is likely a good thing.

But there may also be a negative side to this tendency toward avoidance.  That negative side is the part that I think frequently trips me up and leaves me face down on the proverbial pavement of life.  It is the tendency of our culture to avoid any sort of suffering, pain, or pretense of unease—or dis-ease—whatsoever.  It is the glossing over of the lament in favor of pretending that all is well and good and easy, all of the time.  It is the lie that we don’t just avoid the things that are uncomfortable, but that the things that are uncomfortable don’t exist—and if they do exist, that something is wrong and needs to be “fixed” and fixed immediately.

If you’ve read anything else that I have ever written, you already know that I suffer from chronic illness, both mental and physical in nature.  Something will always be “wrong” with me.  And the desire to either “fix” or deny the existence of the problem is, therefore, always with me.  I’ve found, through many therapy sessions and lots of searching of my own spirit, that this desire is based largely on cultural perceptions.  It is shameful not to “work”, “have a job”, “do something with your life”, “have a purpose”, and it is shameful to “beg”, “live off other’s hard-earned money”, “take what I didn’t earn”, “play the victim”, “act sick”, “sit on my ass all day”, “be lazy”, or not “suck it up”, “get over it”, “take some Tylenol and get off my butt”, “push through the pain”, or to be like “my friend”, “my husband’s cousin”, or any number of other people and “run 5k’s”, “go to work every day”, “take care of five kids”, even though they have [insert one of my illnesses here] “just like you”.

Not only do I cope with my illness every day, but I deal with the public perceptions and the cultural shame that goes along with being chronically ill.

A court has determined that I cannot work—that there are no jobs that I can do given my particular limitations, diagnoses, skills, educational background, work history, symptoms, and the way that those things intersect with the job market in my geographical location.  “There are no jobs.”  That is literally in the court transcript for you to read, if you were to read through the lengthy hours of Q and A that were required for us to get to the point where a judge determined that I am disabled.

But that transcript doesn’t matter to probably about 85% of the people who I come into contact with in my day to day interactions.  It doesn’t matter because of this negative sense of avoidance.  I’m supposed to avoid suffering and illness and flaws and bad shit.  I’m not supposed to acknowledge that, but fix it, and fix it fast.  I’m not supposed to admit that I can barely sit at this desk right now because of the pain in my back.  I’m not supposed to admit that I’m at this desk and not a “work” desk because I am disabled.  I’m not supposed to BE disabled.  I’m supposed to take some Tylenol and get off my ass and run a 5k like aunt Janet from West Virginia!

Because we avoid suffering.  We get over that shit, or we lie about it, or we become the kind of people who complain all the time but only a small, acceptable, mundane amount of complaining that is socially acceptable around the water cooler at our jobs.  Because we are allowed to be moderately miserable all the time if we are still productive.  But real, serious, deeply affecting problems are not socially accepted.  Those we avoid.

I sometimes wonder who decides which challenges are acceptable and which are not.

When all the women have ovaries that stop producing more eggs, we call it menopause and call it normal.  When all the men start having limp, less adept penises and lower sperm counts, we call it “erectile dysfunction” and make a billion-dollar industry out of making them hard again, instead of accepting that aging men can’t always perform sexually on command.  It’s normal for a woman’s sexual function to change, but it is a problem to avoid and be “fixed” for a man?  Who decided that?  The pharmaceutical companies?  The medical professionals?  The sex work industry?  Who made this a thing?

And who made being chronically ill unacceptable but being terminally ill perfectly fine?  That question makes me sound like an asshole all the time, I know.  But it only makes me sound like an asshole because of the perceptions already infused into those terms.  Chronically ill.  Terminally ill.  One is a drain on society.  One is a sainted state worthy of all the compassion.  We all know which one is which.  I’m not the sainted one worthy of all the compassion.  I’m the other.  And I am an asshole for pointing out that there is a bias.  I am an asshole for pointing out that dying faster somehow makes you worthier of care.  (At least in the eyes of many in our society, that is—it doesn’t actually make you worthier of care.)

Who decided that I need a “real job” to be treated like a “real person”?  Who decided that I am allowed to be treated poorly because I am in a state of poverty—or that I deserve to live in an impoverished state if I cannot work due to illness?  Who decided that $750 per month is the amount that a disabled person who has less than 40 work credits should be forced to live on, making this entire post even a thing that exists?  And why do I not get any credits for the early years of my work history when I was delivering papers and babysitting, or for the years when I was working two part time jobs and going to school and raising a daughter as a single parent.  That was more damn work than I have seen most anyone do—ever.  And that doesn’t “count” for anything.  Who decided that doesn’t count as work? Who decided I get $750 instead of $3000 because of those years?  Who decided that my life isn’t valuable enough to be offered what I need to not be sitting at this desk, in pain, avoiding my bills like the plague.

If I had the plague, I would get more benefits.  Because it would kill me.  If you are dying they let you have a better quality of life than if you will live.  Oh wait … not socially acceptable.  We already went over that.

So, this avoidance, this thing that was written into our DNA as a positive survival instinct has somehow become a thing that we use to cover up and shame and deny and harm whatever is connected to our socially unaccepted suffering.  And I don’t know that I will ever get a complete, straight answer about how that came to be, or who determined and decided what was or was not acceptable, but I do hope that I will someday begin to shape the conversation around why we do this, and why we need to stop doing this.

We need to stop avoiding suffering and pain and bad shit that happens, because it happens to all of us.  It is part of the human experience.  And it is an important part of that experience. While much of my suffering was regrettable, and I obviously would choose to go down another path if I could, the person I am today was forged in the flames of that suffering.  Those challenges shaped me.  And they made me a better person.

They didn’t make me a better person right away.  In fact, they led me down a dangerous road to some very dark places.  But that happened when I was trying to hide and avoid and stuff away all of the bad things.  If I had been able to and allowed to cope with what I had experienced as a child, or a teen, in positive ways—expressing the pain and the betrayal and the confusion and the suffering openly and in a safe space—I would have avoided that road and those places altogether.  I might have avoided mental illness and chronic pain altogether.  (Nobody knows what causes fibromyalgia, in distinct terms, so I cannot know that for certain, but it is linked with stress and often presents in tandem with post-traumatic stress, so it is possible that without the PTSD there would be no fibromyalgia.)  Our society’s insistence that pain be hidden likely caused me more pain.

But now that I am in a space where I am able to process and cope with and express all that I should have been allowed to express all those years ago, I am becoming strong and wise and good in ways I might not have were it not for the experience that I went through.

Lament shapes the spirit in beautiful ways.

Pain makes us compassionate, kind, understanding, gracious, loving, connected, and strong.  That is not something that we should hide.  And that is certainly not something we should avoid.

We still shouldn’t run, stupidly, toward danger without a plan.  But there isn’t a need for us to hide and avoid something that makes us compassionate, kind, understanding, gracious, loving, connected, and strong.  Frankly, hiding that seems like a stupid run toward danger … it probably is.  And that is probably why so many things about our society today seem so messed up, in the sense where one person refuses to lay down their “right” for the lives of, potentially, thousands of others.

We are in danger, and we are being stupid.  Because we have hidden so well and avoided so effectively the thing that makes us compassionate and kind and understanding and gracious and loving and connected and strong, that we have become the sort of society that breaks apart and leaves individuals to be slaughtered as “they”, somehow apart from us and without our compassion, rather than feel the pain of the truth—that we have become so unfeeling that we cannot mourn our own brokenness, so we deny it again and again.

We have put some imagined dessert to rights of the individual above the conscious collective of the society.  I now becomes more important than we.  And that is a grave error.

We, the people—that is how it begins.  Not, I the individual who wants a gun and an erection despite the compassion and the biological facts that are required for me to understand the world around me.

“I don’t suffer.  I don’t have pain.  I take a Tylenol and go to work.  I have rights.”

But that isn’t true.  We all suffer.  We all have pain.  We all have days when no painkiller will dull the ache we feel—be it physical or emotional.  And, most importantly, WE have rights—all of us together, in concert, and being accountable to one another.  The only way to accurately see that, is to start to uncover the pain and suffering and to acknowledge it, to express it, to cope with it, and to begin shaping yourself and your life into one that has compassion, kindness, understanding, grace, love, connection, and collaborative strength.

Stop the avoidance.  Embrace the lament.  Feel.  Suffer.  And come out the other side a better version of yourself.

Now, if you will excuse me, I need to suffer through paying my bills.

 

I Should Be Packing Right Now

/ christyterese / 1 Comment

The journey to this moment has been long and hard and chaotic and sometimes frightening.  So, now that I am here, I am paralyzed.

This is certainly not the first time that I have fought my way through all sorts of trauma to find myself safe on the other side and stuck.  Just stuck.  It is like my self doesn’t know how to handle “normal” living. Which should not be surprising to anyone who knows me or my story well, because the great majority of my living has been disordered and chaotic and traumatic and totally fucking wrong.  It isn’t a shock to suddenly feel all weird and confused by normalcy and calm.

But it is a problem.

Sometimes you meet people in life whom you believe create drama.  I’m not one of those people, but I do believe that they exist. I understand why people could believe that I am one of those people, however.  Because I share a lot of characteristics with those people, I am sure.

I don’t create drama.  I’m not running around seeking problems and hoping to add them to my list of affairs.  But I do have a life that attracts many dramatic or uncommon or challenging events.

For instance, this past weekend I discovered that my daughter’s father may or may not be the biological child of the man that he and we have believed him to be the son of for many years.  And I found this out from the adult child of that man, whose stories while she was growing up, completely estranged from the “other family” the man had previous to the family he shared with her mother, are the proofs that we have for this new information.  Is he my daughter’s grandfather?  Not according to him.  But that doesn’t change much other than the storytelling gene might be really strong among the men of this particular family.  Or it could change everything, and my daughter, and the father she has never met and does not want to, might have a totally other family they are completely unaware of out there in the world.  And the grandmother she never met—who then is more unfaithful and dishonest a woman than we imagined, which is saying something—is the only one who would know the truth, assuming she is still living (as I mentioned, we don’t exactly keep in touch with her dad’s family).

See.  This creates all sorts of fucking drama.  I don’t want it.  I don’t need it.  It is confusing and chaotic and leads to all sorts of questions that I don’t know whether to answer or leave alone.  And it doesn’t just involve me, but a woman who may or may not be an aunt to my daughter, and a man who may or may not be her grandfather, and a daughter who may or may not want to know the answer to whether or not they are or whether there is an entirely other family out there somewhere.  But then, how do I help her find that identity if we have no way of accessing that information without contact with a family we don’t want to have contact with?

There is an aspect of the life I am now living that creates this complication.  It isn’t necessarily a simple choice to be or not be in the midst of drama.  Sometimes drama comes for you, and you need to figure out if there are any ways to avoid it, or ways to tackle it without becoming completely absorbed by it.

My therapist likes to say, and I am getting good at saying it before she reminds me, that there is “no such thing as normal”.  All of us have some things in life that others cannot relate to exactly.  All of us have some things in life that are relatable to almost everyone.  But there isn’t one way of living life, and there isn’t one way of living it correctly, certainly.

I know, however, that much about my life is uncommon or not very relatable for a majority of the people that I encounter on a day to day basis.

Not many of us can say that we were abused by a relative from a very young age and for an extended period of time, causing us to develop a complex form of PTSD that acts much like the trauma of captivity in terms of brain malformation, and because that disability and that abuse were not discovered or appropriately handled until well into adulthood, repeated traumas of all sorts were added on top of that early trauma, leaving layers and layers of trauma and pain and suffering and alienation and mistrust.  So many layers.  And then, because that trauma was not dealt with appropriately and all those layers were trying so hard to be forced into alignment with “normal” or at least “average” living during the everyday, our bodies took on that trauma and turned it into physical disease.  Or at least that is one theory, and one that I can easily wrap my malformed captivity brain around.  So, in the prime of our lives, as our little birds leave the nest, and we can go out and do anything we want, we are actually left with the option to A) live according to the very strict and challenging rules of the state regarding disability income and expense, letting decisions be made by another in most cases and feeling like we still have no agency all these years after abuses can supposedly no longer reach our bodies, or B) suffer and die.

And all the “normal” people will think that statement is overly dramatic.  But they don’t have the life where the drama attacks you in the calm of a sunny Saturday afternoon when you see a message about a man named Marvin.  They have lives without disordered thinking and layers and layers of trauma.  They have working dominant hands.  They have sisters who answer the fucking phone when they call—for the third time, to wish her happy birthday.  They don’t freeze when things seem good or average or positive.

They call that fucking Wednesday!

Wednesday.

To me it is like hell freezing over.  And, granted, the temperature in Chicago this week could probably freeze hell.  So, maybe that happened.

I don’t generally have the luxury of a normal day with positive normal things happening.  There aren’t many days when some aspect of depression, anxiety, trauma, abuse, addiction, violence, poverty, pain, or some other messy, bad, or unfortunate thing is having an effect on me or the things around me.  And it isn’t that other people don’t also have these struggles.  I know that they do.  I know many people who have similar struggles.  But I know very few people who have ALL of these struggles.  And the compounding effects are significant.

I carry the weight of a hundred traumas—not just three or four.  So, a trauma-free day?  That just doesn’t exist for me.  I cannot imagine it.  And it frightens the hell out of me.

I know that the more I work in therapy, and the more I work to repair or bypass the disordered thought processes that have become normative for me, and the more remedies and treatments I discover, and the more I work to deconstruct what others have crafted and build for myself a self and a life that I love, the more I will have days that are free of these traumas.  At some point, I may even become accustomed to “normal” or “average” days.  (God, I hope not! Lol) But I am not there yet.

So, while I should be rejoicing in the fact that I probably have an apartment, and that all the pieces of the puzzle are fitting together for my move to the northside, where it is safer and I am closer to amenities and friends, I am, instead, writing this.  Because, I have been packing for months through chaos and threats from my landlord, but now that I have the promise of new owners and another lease, I don’t know what to put in a box.  I’m completely stymied by the normalcy of it.

Can I really be getting a decent apartment in a good neighborhood?  Can that be true?  Can I be inside the margin?  Am I allowed that?

Or is the bottom going to fall out and the earth is going to swallow me up, proving that hell hasn’t actually frozen over, but it was just waiting for me to be lulled into a false sense of security before it devoured me?

That question would sound like insanity … except for the fact that the bottom has been dropping out and hell devouring me for the last 35 years.

Yes.  I should be packing right now.  And by later today, or at least tomorrow morning, I likely will be, but for the moment I am processing this news slowly and cautiously—not wanting to get too happy too hastily, just in case.  Not to believe in the good before the good proves itself to be existent.

Yes, people of the Jesus-loving variety, I know what faith is and I need no proof-texting from the book of Hebrews.  I graduated from two seminaries.  But that definition means nothing to the malformed captive brain.  Only proof of the existence of the good works, and the only good guaranteed is that which comes from within, frankly.  I can only control me.

And you can’t control me either, so that is probably a good point to state, just in case that isn’t self-evident.

I don’t make life complicated.  It made itself complicated over time.  And it now doesn’t become easy because I want it to become such.  I don’t create drama.  My life has had lots of events that were traumatic and the traumatic brings along the dramatic.  The trauma doesn’t disappear because I want it to, and the drama doesn’t either.  I need to deal with them, cope with them, work through them.  And that takes time and hard work.

I don’t actually believe that my apartment with fall into hell.  I don’t believe in a literal hell, so that can’t be a thing I believe.  (I wrote a paper on it once for one of the classes in one of the seminaries.  I received high marks.)  But I do believe that the world should be kinder to those of us who have struggled much in our histories as we seek to find stasis in our present.  It isn’t as easy as it looks.

It is easy to believe that walking on flat, solid ground takes no effort if you have never been out at sea.

Stasis isn’t a given in a life that has been largely characterized by turbulence.  And choosing stasis isn’t easy when turbulence feels more natural.  Choosing the unnatural thing continuously until it no longer feels abnormal, or hard, or foreign is a great burden.

Change of any kind is difficult.  But changing patterns in this manner—taking what feels wrong and trying to tell your brain over and over that it is right, despite all sorts of triggering objections, is excruciating.

Packing right now is a devastating choice.  It means hope beyond all telling, and if things go wrong and this apartment doesn’t happen, it means pain that I cannot ever express—not ever … I don’t have the physical capacity to express it and even now, imagining having to express it at some point makes me feel like I must vomit.  That is what this means to me.  That is what choosing stasis means to me.  That is what “doing the normal thing” has invested in it.  I feel like my head might explode and I want to vomit—that is what normalcy is doing to me right now!

I’ll do it.  I’ll get there.  But after almost 5 years of therapy, with 20-some medications, and in the best physical and mental state I have been for some time, this is still an excruciating moment.  So, the next time you cannot understand why your child hasn’t finished their spelling homework, or your neighbor is dating another loser, or your grandpa gets all weird when you mention that son he rarely talks about remember this post.  Remember that sometimes choosing normal is extremely difficult and painful.  No matter how much being and having something—anything— “normal” is what we want.

Be kind to one another.  And for heaven’s sake somebody come over and help me pack these fucking boxes!!   lol

Five Common Arguments Against Watching 13 Reasons Why, and Why, as a Survivor, I Reject Them

/ christyterese / Leave a comment

 

Recently, the Netflix series 13 Reasons Why has created what I wish were helpful conversations on my Facebook feed.  But, more often than not, the people who are posting are educators of middle and high school students in small towns.  The reasons why I have those sorts of educators on my feed are simple—I used to live in those small towns.  But when I am looking at these posts, and reading the arguments against the series, I can’t help but become angry and frustrated with the content and the comments.

I am a survivor of rape, sexual assault, and domestic violence.  I have complex post-traumatic stress disorder, and suffer from anxiety and depression.  I have a daughter who suffers from depression and anxiety, shows signs of post-traumatic stress (we don’t yet know for certain if she adopted those symptoms from being raised by me, or if she suffered some violence as a child that we have not uncovered).  Both of us have been suicidal.

Given my experience with these events and situations, I have a perspective that, I believe, needs to be expressed and heard by those small-town educators.  Because their reasons for not allowing students access to this series or the book that inspired the series are not, necessarily, informed reasons.

So, here are five common arguments against the show, and why I reject those arguments:

  1. Students are too young to see depictions of violence, assault, and suicide.

 

I can’t be certain when I started to be sexually abused, because I was a child, and I dissociated from those events.  What I can say with certainty is that I started exhibiting signs of acute trauma by age nine or ten, and I was suicidal by about the age of eleven.  My daughter first needed psychiatric care at age 9.  She was hospitalized by age 16, having struggled with major depression for over a year, and finally admitting her intention regarding suicide.

 

Students are not too young to see depictions of such violence, assault, and suicide.  Students as young as eight or nine years old are experiencing such violence, assault, and thoughts of suicide!

 

There is some sort of desire to ignore that our children are exposed to and experiencing things that we wish they were not exposed to or experiencing.  Even I, being fully aware of all the warning signs of mental illness, didn’t know that my daughter was experiencing certain symptoms until it was almost too late.

 

We don’t want our children to be suffering in this way, so we ignore the signs of that suffering—pretending that the bad things can’t be happening.

 

This does no good for our students.  This does no good for the whole of humanity.  Pretending problems don’t exist has never solved a single problem.  Wishing that our kids are too young to be harmed in this way—battered physically and psychologically, being taken advantage of, being pushed to a place where life is too hard to continue living, being abused, bullied, assaulted, raped—will not make it a reality.  It is ignorant to keep insisting that middle and high school students don’t see this violence every day.  They do.  They aren’t too young to watch a show that addresses issues that they are experiencing.  They certainly are not too young to watch a show that brings the possibility of identifying with characters that are suffering, when nobody else in their life or experience seems to understand or care about what they are going through.

 

As a child, I didn’t know where to turn with my pain.  As a teenager, I didn’t feel connected enough to anyone to admit how dark and dangerous my internal dialogue was becoming.  I pretended to be innocent and outgoing and “normal”, because nobody was talking about things like mental illness or suicide.  I felt completely divided and set apart from everyone around me.  I had nowhere to turn.

 

13 Reasons Why addresses these issues in what seems like a violent and shocking way.  But our children, our students, and the youth in our society are not protected from such violent and shocking events.  They are already experiencing this.  And the series gives them someone to identify with, and offers resources where they can receive help, should they identify with those who are being bullied, assaulted, or raped, and those who are considering death by suicide.

 

The honest address of common experience is not too dark and damaging for the young people around you.  It is an opportunity to feel heard and understood.  It is an opportunity to feel normal, in a society that wants to insist that this violence isn’t normal.

 

 

  1. “Counselors” are against youth watching the show.

 

This is an annoying argument, because there might be some truth to it, but that doesn’t necessarily make it good advice.  There have been several people who are school counselors or mental illness “experts” or social workers who have come out with statements or articles that offer their opinion of 13 Reasons Why.  Some of them say that watching these events can trigger or encourage negative behaviors.

 

This is partially true.  Watching events that you have experienced can trigger symptoms.  This doesn’t always happen, however, and it isn’t always a terrible thing.  Being in a controlled environment, knowing your own triggers, and being aware of the content ahead of time can all limit the triggering effects of viewing such events.

 

13 Reasons Why has very clear trigger warnings before each episode that will portray events that have the potential to harm those who identify closely with such events.  When we were watching the show, one such warning prompted my daughter to ask me if I wanted to watch.  She knew that it might be a difficult thing for me to see.  But I watched.  And I was very glad that I watched, even though it was a very challenging scene.

 

I later commented on a Facebook post that was basically a “counselor response” to the show.  I said that it was the most real and honest depiction of the event that I had ever witnessed.  I found watching the characters go through such events healing and validating, not triggering.

 

Some people will find these episodes and these images difficult.  Some people shouldn’t watch, if they are concerned about triggers.  But, for many who are survivors of such events, this is a show that offers an extremely honest view and allows you to connect to your own pain, your own struggle, and your own healing.  Will all teens be ready to address these issues with such realistic and graphic images?  No.  But will many of us, as survivors, finally feel heard and understood and supported by seeing such clear and unrestrained images?  Yes.

 

“Counselors”, as a blanket statement, could include school officials who haven’t had psychological training, really bad advisors (like the first “counselor” I had as an adult, who told me it wasn’t the fault of my abuser that he abused me, but that “curiosity” is normal), or excellent mental health care providers.  And these people are not knowledgeable regarding every case that might crop up.  There are numerous ways to connect with the material, and while one person might have a bad reaction to things, another might find it healing—as I did.  The point here is that there is no one appropriate or “correct” approach to content like that in 13 Reasons Why.  The best way to consider viewing is on a case by case basis, with the survivor being the one whose voice is heard and the survivor being the one who chooses to watch or not watch.

 

The most triggering movie that I ever watched was Captain Phillips.  It didn’t have any trigger warnings.  And it wasn’t about abuse or rape.  I saw (spoiler alert) Tom Hanks step onto a vessel that was rescuing him.  As he did, he—in an amazing performance—exhibited signs of trauma, because he had just suffered a significant trauma.  I began to weep and shake and shudder.  Seeing him show the shock and dissociation that PTSD sufferers go through, I was feeling all that the character was feeling.  It was awful.  And I may never watch it again, but even with the triggering and the awful feelings, that scene was an opportunity for me to acknowledge and make some sort of peace with my own suffering.

 

There is no way to know for certain what will and what will not trigger or affect a person.  But since bullying, sexual and physical assaults, and rape all have a common thread of taking away the autonomy of the victim, allowing each person to decide and be in control of what they choose to view and not view is important.

 

I’m not a “counselor”.  I’m a survivor.  So, I haven’t gotten a degree in psychology.  But what I do know is that autonomy and identification and validation are essential to healing and coping and overcoming events like those depicted in 13 Reasons Why.  A stranger who claims to have superior knowledge because of a few classes is not necessarily a help, because telling survivors what they can and cannot do, or see, or hear, or cope with can be a retraumatizing event.  We need autonomy.  We need to decide on our own.  And we need to cope with the support of others, not the demands of others.

 

  1. The show glorifies suicide.

I honestly can’t understand this argument against 13 Reasons Why.  I can’t understand how someone could watch such terrible events unfolding and think to themselves, “Wow, I think I should do that.  That is awesome!”

 

If you are suicidal, please seek help.  If you are not currently experiencing suicidal ideation, but have in the past, consider the trigger warnings and make an informed decision regarding whether or not you wish to view the show.  (Again, you deserve autonomy and get to choose the media to which you are exposed.)

 

That being said, the depiction of suicide in this show is horrible, violent, sickening, and shocking.  It is intentionally so.  The producers worked very closely with several medical professionals in their decision-making about how to best portray this event.  And it was intentionally depicted, and intentionally made very difficult to view, because it is a horrible thing.

 

I’ve heard some people say that the show could make kids think that suicide is a good way to get revenge on the people who hurt you.  I cannot comprehend how they come to that conclusion.

 

It is obvious that the main character is suffering from major depression, dissociation, flat affect, and more.  And the “suicide note” she leaves behind is deliberately affecting for those who harmed her.  However, every suicide note offers reasons why the one who died by suicide did so.   Often, those who are left behind to read that note feel guilt, remorse, and a sense that they failed the one who died.  It makes sense to feel that they failed the one who died, because after the life has been taken, you see the signs that you passed over when the person was alive.  You find the truth later.  You can’t always see the pain until the pain has become too much for the bearer of that pain to carry.

 

Hannah, the one who dies in the show, is hiding her pain as often as possible.  And there are good reasons for her to do so.  Earlier, I said that I pretended to be all sorts of things, because the admission that I was suffering from dark and dangerous suicidal thoughts was not something that I felt anyone would understand or accept.  I hid my pain.  I still do.

 

This combination of glossing over slights and hiding pain and suffering creates a perfect storm of struggle.  And the one who is struggling often feels alone in that struggle.

 

The depiction of suicide in this show is precipitated by all sorts of expressions and depictions of the pain that is being hidden and the opportunities missed for others to see that pain.  And it is the “note” recorded on 13 tapes that shows us all of that.  Suicide is an escape from pain.  Suicide is not an act of revenge.  Sometimes there may be an element of “I’ll show them” thought in the planning stages of suicidal ideation.  But that occurs largely because the one who dies by suicide has sought to express their pain on multiple occasions and has not been heard, not because there is a deliberate desire to harm those left behind.  Those left behind are completely cut off in the mind of the one who is considering suicide.  They don’t seem to be able to feel at all, because they can’t see your pain.

Suicide isn’t logical.  Suicide isn’t vengeful.  Suicide is the thing that you turn to when there is no other place to turn.  Hannah had at least 13 reasons to feel cut off from and ignored by her community.  She had at least 13 burdens to carry.  And that weight became too much to bear.

Watching her bear that pain, and watching her end her life because she could no longer carry the weight doesn’t glorify the act.  It makes the act sad and avoidable and gut-wrenchingly difficult to watch.  There is no glory in this show.  None.  There is no glory in that escape.  None.  There is no glory in her pain, or in the way she slowly but certainly breaks down completely, and loses the will to live.  None.

 

If you imagine that young people will watch this show and want to follow in the footsteps of Hannah, you should probably do a bit more research on suicide and suicide prevention.  Because it isn’t the act of death by suicide that you should be most concerned with.  You should be most concerned with the 13 reasons that brought Hannah to that point of desperation.  You should be most concerned with changing the behaviors and eliminating the threats that caused her to reach that point.  Suicide is terrible, but it isn’t really the point of the show.  The point is the reasons.  The point is that there were numerous events that should never have happened.  The point is the ways that her pain was caused and compounded and collected.  The point is not the suicide. The point is the many opportunities to care about others, instead of inflicting pain and violence, that were missed.  And focusing on those things can actually create change and reduce the incidence of suicide—not inspire more people to die by suicide.

 

  1. 13 Reasons Why is not for the vulnerable.

 

Another argument that I am confused by, as a survivor of abuses, is the idea that those who are “vulnerable” shouldn’t be exposed to the series.

 

I’m not certain what the definition of vulnerable, in the minds of others, might be.  It is defined as “susceptible to physical or emotional attack or harm”.  And in my opinion, those who are most susceptible to physical or emotional attack or harm are the ones who will most identify with, and find validation and acceptance in, 13 Reasons Why.

 

Hannah is susceptible.  But so is almost every other character in the book/show!  There are so many instances of bullying, abuse, rape, denial of harmful actions, misrepresentation, image ruining, slut-shaming, and more that it is amazing that they are all able to fit into one story.  There are numerous people who are suffering harm at the hands of others within the storyline.  There are numerous vulnerable people.

 

I identify with Hannah.  But I also identify with Clay, with Tony, Jessica, Alex, and Olivia.  They all have particular vulnerabilities, and they all experience suffering of some sort throughout the series.

 

I’ve already expressed how the choices about viewing triggering events should be left in the hands of the victims of abuse.  This includes those who are vulnerable.  Because if you are vulnerable, you have likely already experienced the things that are expressed in the episodes of this show.  If you are at risk, you are likely already suffering in some way.  And identifying with the characters in this show can offer much-needed validation of those sufferings and those vulnerabilities.  Connecting with a character can bring comfort and can offer perspective that isn’t always available to us as individuals within these situations.

 

One of the immense strengths of the show is that we see it unfold from the perspective of Clay, as well as from the perspective of Hannah.  And because we see it unfold from multiple perspectives, we can also gain multiple insights, alongside the characters in the tale.  When you are living in a state of vulnerability, or suffering, or abuse, it can be very difficult to see things from varying perspectives.  One perspective begins to shove out all other ways of thinking about the events.  We get tunnel vision.  This show lets those who are vulnerable, who are suffering, who are suicidal, who are being bullied, who have been assaulted or raped, look at the events unfolding from the outside, and allows us to gain perspective.  This is a good thing!

 

For those who have never experienced these events, I can see why you would want to seek to protect the vulnerable from difficult images and serious events.  But because we are vulnerable, we are likely already experiencing these things, and already feeling unprotected.  Allowing us to connect with these characters, and watch them navigate these horrors can be healing, and can offer us support.  Fictions of this type, which are so close to our own experience, can be healing and helpful, and not just damaging or dangerous.  You may not know how much the vulnerable need this connection.  You may be unaware that they need these characters to connect with and find validation.

 

  1. The show is so hopeless.

 

I’ve heard many say that this show isn’t good because it is hopeless.  It doesn’t have a happy ending.  The pain doesn’t go away, and there isn’t any resolution.

 

Exactly!!

 

If you are a person who thinks this show can’t be helpful because it doesn’t resolve the pain of the characters, then I encourage you to consider the life of a survivor of these events.

 

There is no resolution.

 

I was sexually assaulted in childhood.  I’m almost 43 years old.  Nothing has changed.  I’m still suffering from anxiety, depression, and PTSD.  I’m still in therapy.  I’m still on medication.  My abuser still sits across from me at the dinner table, on occasion.  I haven’t spoken to my ex-husband or ex-boyfriend who were violently abusive in many years, but their words still harm me at times.  I’m still aware of the ways that the neighbors and classmates and people in my community harmed me, and then blamed me for that harm.  I’m still an addict.  I’m still incapable of positive romantic relationships.  I’m still a loner, in many ways.  And I’m chronically ill in ways that will affect me for the rest of my life.

 

There is no resolution.

 

Life isn’t a story.  And if it were, it wouldn’t be a fairytale.  Fictions can resolve into nice little packages with happy endings, but life, and especially a life of vulnerability and suffering and abuse, doesn’t resolve in those ways.

 

The story is hopeless, except for Clay’s assertion near the end of the series that “this needs to change”.   The only hope is the fact that we need to begin to treat one another better, and to stop patterns of behavior that harm and break people.  The only hope is that those watching from the outside of this story, the viewers at home with their eyes glued to this drama, would understand the purpose of telling this tale—that we, the audience, need to take up that gauntlet and fight to change the way we treat one another.  We, the audience, are responsible for creating hope and affecting change and stopping these horrors from being acted out in real life.

 

My life is not filled with hope.  My life has not resolved into a neat little box of rainbow’s-end happiness.  My life is still filled with burdens that are difficult to bear.

 

A happy ending wouldn’t make 13 Reasons Why a better story.  A happy ending, filled with hope, wouldn’t inspire us toward change.  It would reinforce the idea that the pain goes away, and the effects aren’t all that bad, and we can ignore these injustices and let them resolve.

 

These injustices won’t resolve.  And the victims of this violence won’t have fairytale transformations.  The only way we get a happy ending is if we stop avoiding this pain, and stop insisting that we aren’t responsible to and for one another in our communities and in our world, and stop ignoring the ways that others are being harmed in every moment, and make the way we act and think and live better.  The only way we get a happy ending is by our own actions.

 

Because 13 Reasons Why is a critique of what we currently do and what we currently allow.  It is meant to give power to the young and vulnerable, and to affirm their circumstances are an injustice, and to demand that we do better at protecting one another.  This show is designed to teach us to stop physical and emotional attack or harm.  This show is pointing out our failures, and begging us to fix what is wrong in the way we treat one another.  This show is the truth we don’t want to see and acknowledge.

 

But refusing to see and acknowledge the truth helps none of us, so I encourage you to watch 13 Reasons Why, to cope with the horrific, graphic truth, and to acknowledge that up to this point, many of us have been a part of the problem.  Then, and only then, can we move forward and find and support effective solutions.

 

As long as some can abuse others without repercussions, we are not yet finding those solutions.  As long as some can abuse others, we are not allowed a happy ending.

 

Face the truth.  Watch Hannah Baker die.  Watch her community reel and spin out of control as they deal with the truths that her 13 reasons expose.  And then make certain that you aren’t letting this happen in your own community.

 

Stop injustice.  Validate suffering.  Heal wounds.  Listen to the victims.  Punish the perpetrators of violence.  And work toward a better world for all of us.

 

 

Sleepwalker

/ christyterese / Leave a comment

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

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

There are many.

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

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

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

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

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

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

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

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

The nightmares I can make go away.

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

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

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

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

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

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

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

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

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

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

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

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

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

But that little girl fought hard to survive.

And I am going to keep fighting her fight.

Like You Mean It

/ christyterese / 1 Comment

My daughter and I were having a conversation the other day about my marketable skills.

I will spare you the details and the discouraging situation that I find myself in regarding balancing health and finances.  If you have not already become familiar with that situation, hit up some earlier posts to get up to speed.

But the outcome of that conversation led me to a new understanding of an old problem:  I don’t think I am good enough.

I’ve literally tattooed the word “Enough” on my left arm.  I deliberately put it in a place that I would see in the mirror every day, because I need the constant reminder that I am enough and good enough and allowed to set boundaries that say to others, “Enough. I won’t tolerate that anymore”.  Despite that reminder, I still slip into a space where my mind convinces me that I cannot accomplish or become or produce in positive ways.  I get sucked into perfectionism.  I get stuck in a mindset that sees criticism as punishment for what I lack.  I get trapped by self-defeating language.  I doubt that I am capable enough, or good enough, or talented enough.

So, while talking with my daughter, and positing a question about whether or not I might be successful in a particular venture, I came to understand that I don’t quit things, and I don’t fail.  I start something new.

I tell myself, “I am an author.  I’m going to work at being an author, and commit to that field.”  And then, a few months later, I am telling myself, “I am going to become a nutrition counselor.”  I take classes and start that venture.  Then, a few months later, I am telling myself, “I could sell my work on Etsy.  I would make money from what I find therapeutic—my art and crafts.”

And, suddenly, I am working toward everything and nothing.  I have too many starts and not enough follow-through.  I have no follow-through not because I can’t do the things, but because my energy is split and traveling in too many directions.

Life has always been this way for me.  I am a visionary—I start things all the time, and I have big dreams, and I am a great problem-solver.  I am not confident that I can be fabulous at any of those things that I start, and dream of, and find solutions for.  I start to doubt my ability, and I put the thing I was working toward on hold, while I think of something new.

I am writing three books.  By writing, I mean not working on at all, but having the idea that the books will someday be finished.  I am an amazing author, but I doubt that talent often enough to not complete any published works.  I am studying nutrition and holistic care.  And by studying, I mean that I am half way through an online study program that I have not even looked at in months.  I doubt that I can be successful in the field, or that people will take a sick, overweight person’s advice regarding wellness and weight loss.  I am opening an Etsy shop.  And by opening, I mean that I have a store name picked out and ideas for what art I will put in that store eventually.  I doubt that people will want or pay a fair price for the things that I have created, and that I will lose money, rather than make money.

My doubt rarely paralyzes me in the physical sense.  I don’t panic and freeze and lose my shit out in the world.  I look and act like a really “normal” person most of the time.  But, on the inside, I put myself into a space where I cannot accomplish anything, because I don’t believe that I can accomplish anything well enough.

Some of this perfectionism comes from my upbringing.  My mother and my grandmother before her were both very concerned with appearances, and with having everything “just so”—at least on the outside.  That desire to look perfect affected my generation as well.  And, at times, I think I am accidentally passing that perfectionism down to my daughter.  But, my family tree is not the only factor.  I also suffer from C-PTSD, a complex form that adds layers of struggle beyond those of the type of PTSD you usually see depicted in media—the combat-related type.  Perfectionism is a symptom of my disease.  When you are in a prolonged state of abuse, such as childhood molestation or domestic violence, your brain behaves in ways that make no sense, but are totally understandable.  You start to work really hard at pleasing people.  You start to do all that you can to make life, home, and self perfect, because you believe that the abuses are your fault—which is part of the terrible genius of abuse tactics.  If you can just do everything “right”, maybe you won’t be hurt, harmed, assaulted, yelled at, molested, or raped.  If you can be perfect, then there won’t be a reason for them to harm you.

But there is always a reason for them to harm you, because the harm has nothing to do with your performance, accomplishments, character, or way of being.  The harm has to do with them and their issues.

I can say that now.  I can say that the people who harmed me did so because of them, and not because of me.  But, even though I can say it, I am not integrated in my logic and my emotion.  Those things are split apart in the long-term abuse—the horror of captivity.  And, while I can say that I didn’t cause the abuses directed toward me, I cannot often feel that I didn’t cause those abuses.

Not being able to feel what I know is complicated.  It is also annoying and frustrating.  Reason and emotion are not tied together in the ways I want them to be tied.  So, I feel not good enough, even though I know that I am capable and strong and beautiful and good and honest and brave and brilliant.  What I know and what I feel cannot connect in the way that I would like them to connect.  So, I still strive for and do not reach perfection.

Perfection doesn’t exist.  You can never reach it, because it isn’t a thing.  Perspective, cultural difference, brain chemistry, opinions, different philosophies, and more make one idea of “perfection” impossible.  There is no such thing.  So, by striving for this goal, we sabotage ourselves.  We are fighting for a thing that is not achievable.  And that constantly disappoints us, and makes us doubt our ability or character or worth.

All of the above considerations came out of that one conversation with my daughter.  And I decided during that conversation that I need to “write like I mean it”.

I decided that I need to take that thing that I love and that I am good at, and I need to keep doing that thing until I can feel what I know.  I need to stop turning in different directions and dividing my energy.  I need to put my efforts into the things that I know I am and should be:  an author and an artist.  I need to act upon my belief that I am a good author and artist, and keep acting upon it until I feel deeply that I am talented.

Under different circumstances, that might sound like a very selfish and narcissistic way of thinking.  But, because I am so conditioned to judge myself “not good enough”, proclaiming my talent and putting all my energies into praise for that talent is a corrective measure that brings balance.

I’m going to put all of my eggs in this basket.  I’m going to write and create like I mean it.  I’m going to make this my life—not because I need to strive for a goal of perfection, but because I love writing and creating, and because I am exceptional in these areas.

Perfection isn’t real, but it still ruins so many of us.  While my C-PTSD makes the struggle against perfection more difficult, and a symptom to be managed, you don’t need to have a history of trauma and a mental illness to strive for things that you need not strive for, and cannot achieve.

I’m not saying to give up.  I’m trying to say the opposite.  I’m attempting to express that what you love is what you ought to pursue, regardless of what “perfection” might be getting in the way of that pursuit.  And I am attempting to express it for me as much as I am for anyone who might read this post.  Because sometimes the word “Enough” tattooed on my arm is not the only reminder needed.  Sometimes we need to keep telling ourselves a thing until we feel its truth, not just know or understand it.

I need to keep telling myself that finished is better than perfect.  I need to keep telling myself that writing and painting and sewing and covering surfaces in comics are worthy pursuits.  I need to keep telling myself that my belief that I am good enough is the truth, and that the feeling that I am not is the lie that I have been conditioned to accept.

I need to keep telling myself to write like I mean it.  This is my goal.  This is my life.   This is my contribution to the world.  This is what I love.  And I am not going to let “perfection” get in the way of doing what I love.

Whatever you do, do it like you mean it.  Because it is, and you are, enough.

More Than I Can Handle

/ christyterese / Leave a comment

 

There is this common statement among those who choose a Christian religious base for their belief system.  I hear it often.  I hate it more every time it is said.

“God won’t give you more than you can handle.”

I call bullshit.

I am dealing with more than I can handle.  I’ve been dealing with more than I can handle since childhood. And every day I wait for the moment when pretending at control is overcome by the chaos of being overwhelmed.

So, here is the thing I need to say:  either the Divine absolutely gives out more than one can handle, or the Divine isn’t a part of the equation at all.

Please do not misunderstand and read that as “God doesn’t exist”, because I won’t challenge anyone on that point.  I believe in divine intervention and live a spiritual, but not religious, life.  The existence of some Divine source is a part of my belief system.  And it does not need to be yours.  If you are not religious, I suppose you could ignore this post altogether.  (But I hope you don’t.)

The statement that the Divine will not let you be overwhelmed, however, is bullshit.  I’m overwhelmed right now.  I was overwhelmed two days ago.  I was overwhelmed last week.  I am consistently given more than I can handle.  And if the Divine exists, and I am overwhelmed, then god does give you more than you can handle.  If the Divine does not exist, then the statement is just bullshit from the very first word.

I’ll try to elaborate without getting into a weird rant or too many details.  When I was a child, I was sexually assaulted repeatedly.  I couldn’t cope with that.  It was too much.  And while my actions were often a cry for help, they went unheard or were misunderstood, so I was marinating in more than I could handle.  I was feeling so much pain and shame and confusion that my brain literally stopped knowing about the sexual molestation.  I had a complete dissociation from the events.  My brain shut those events and any and all memories of those events down.  They were tucked away in a place I didn’t have full access to, and they didn’t become known to me in a conscious way until my first year of college.  And when I became aware of those events once more, it was more than I could handle again.  I became depressed, suicidal, and easily enraged.  I was a mess.  I dropped out of college, moved away, dropped out of another college, harbored a runaway, became a drug addict, and got married.  All of these events were too much to handle.

My husband was violently physically and psychologically abusive.  I got pregnant, got divorced, had my baby, went on a blind date, and started a relationship with a man who influenced my return to drug use and eventually became physically abusive, as my ex-husband had been.

Too much.

And then, it would seem, I “got it together”.  I worked hard, cared for my daughter, went back to college, got a master’s degree or two, and ended up working in Chicago.  While these years seemed like the most excellent years of my life to the onlooking outsider, inside of me there was just as much struggle as there had been in years past.  I smoked a lot.  I ran often.  I did everything asked of me, until I could not do it anymore.  What most don’t know about those years is that my kitchen was a mass of dirty dishes half of the time, I was drinking too much, I was fired as a teacher’s assistant because I didn’t have enough time to read and grade papers. I failed a few classes. My daughter resented me for leaving her with others and not hearing her needs often or well.  I was struggling to keep it together, and looked fabulous on the outside, while the inside was being ripped and torn into ugly, bloodied chunks of flesh.

I had become a master of pretending at a very early age.  It took a lot for me to fall apart in front of people.

But behind closed doors, nightmares and weeping and screaming and praying and begging for the pain to end kept on happening.  They didn’t stop as I grew up and developed and became a “responsible adult”.  They just got pushed under layers and layers of façade.

Around 2010 was when things stop staying hidden.  I couldn’t control it anymore.  Tears would come at the most inopportune time.  The lack of sleep from nightmares and insomnia was causing my body to suffer.  I started experiencing chronic illness, and I started to look and sound like a person without hope—crazed with the desperate state of my psyche and the onset of more and more symptoms of illness.  I was breaking down in front of people, instead of doing it behind closed doors.  And people ran away rather than be sucked into my despair.

It’s hard for people who are not given more than they can handle to watch you crumble under the too much.  They don’t understand it.  And it is frightening.  But what I think is the hardest thing for those people to come to terms with is that the platitude they have believed is not true.  Some of us are given way more than we can handle.

Because some of us are given more than we can handle, we need help.  Help, need, care, and the like are not things that most want to offer, so they cling to the lie and insist that god won’t give me more than I can handle.  But I know that is just an excuse not to get involved in the pain of others.

Empathy hurts.

Walking into the center of another person’s trauma is painful.  Feeling what they feel is terrible, because it is completely and utterly too much.  And nobody wants to feel what I feel.

Nobody wants constant physical and emotional suffering.  Nobody wants to face fears and be struck down and struggle through depression and suicidal thinking and destroy relationships through mistrust and sob with such intensity that you need to sleep for three hours to recover the ability to stand.  And, on one hand, I don’t blame you for not wanting to experience what I experience.  On the other hand, leaving me to suffer alone and offering me platitudes that I know are lies makes me despise you for not standing in solidarity.

Because if you cannot handle what is coming at you every day, and if you are overwhelmed, you need others to help carry the weight.  I have approximately six people who help carry the weight in a consistent and generous and loving way.  One of them I pay, because she is my therapist.

I understand more than anyone how heavy and exhausting and painful carrying the load of my life is, but I don’t have the option to step out from under that weight.  I have to cope, shift, manage, and try not to be crushed forever by that weight.

There is another saying—less religious and more true—that I sometimes use.  “Many hands make light work.”

A heavy burden becomes light when there are twelve people lifting, and not just one. I would love for us to acknowledge our avoidance of the burdens in the lives of those around us.  I would love for us to accept that the only way to make things better is to add our hands and help carry the burdens of others.  I would love for us to admit that there is a lot that is overwhelming, and that it won’t go away because we pretend that god makes life easy enough for us (or hard enough for us, depending on your perspective) in relation to our ability to be weighed down.

You don’t keep placing items in a grocery bag until it breaks.  You open and fill a second bag.  You disperse the weight, balancing things out and making certain that there isn’t too much pressure in one spot.

(Yes, I just unintentionally made a grocery bag analogy to suffering.  But I can’t really think of a better analogy right now, so it stands.)

So, we are given more than we can handle.  Which is why we need others supporting us.  All of us need others to carry a bit of the weight at times.  That looks different at different times and in different spaces.  But none of us is immune to being overwhelmed.

My life has had too much to handle for a really long time.  I get better at handling it through coping strategies.  But I still haven’t worked through all the burdens or had the weight lifted.  I still make valiant attempts at handling it all.  I still pretend I am well while I am carrying immense pain just under the surface.  But I fail all the time.  I hurt all of the time.  I feel too much.  I need too much.  I falter too much.

And my only hope is that others might find their way toward helping, and that hands would be added, and that my burden may become light.  Help me Obi Wan Community, you are my only hope!

I hope that empathy might become something that we embrace, despite the hurts, because it also brings shared joys.  I hope that generosity rules the day.  I hope that we start to dissect the lies that the platitudes reinforce, and come to understand that we need one another to survive.  I hope that we find the strength to share, to respect, to dignify, and to accept.  I hope we leave behind individualism, judgment, marginalizing, and rejecting.

I don’t know that this is an eloquent post.  It is a needed expression.  Mostly, I need to say it, because it is boring a hole through my mind.  But I also hope that it is heard and accepted.  Because I have always known that the Divine isn’t giving me any number of things to handle or not handle.  The Divine gives me an assist when all the things are too much.  The Divine doesn’t give anyone burdens for the fun of watching us struggle.  And the Divine doesn’t give burdens to prepare us for assisting others in their burdens.  The Divine is the opposite of burden.  The Divine is love.  And whatever is burdensome is what we need to fight against, not for.

When racism tears apart a community, we fight against that.  When illness strikes a body, we fight against that.  When fear creates divisions, we fight against that.  When poverty leaves people in the streets, we fight against that.  When little children are violated, we fight against that.  When women are not given a voice, we fight against that.  When gun violence steals lives every day, we fight against that.

And we fight together, in solidarity, and as one entity.  Because there is more in each of those situations than we can handle, and ridding our society of these evils requires our many hands, working together, to unburden the most vulnerable.

I happen to be one of the most vulnerable, because life tossed all sorts of challenges at me, and so my plea for justice—the unburdening of the most vulnerable—ends up being a plea for my welfare also.  I beg for hands to help on a regular basis through my fundraising site.  But I want, today, to express that there are so many more burdens than mine.  And there are so many who do not have hands helping at all, where I have a few.  So, I’m not just advocating for myself.  I’m advocating for all the poor, disabled, homeless, captive, imprisoned, endangered, devastated, depressed, and unsupported victims of all the ills within our society.

Lend them a hand.  Live in solidarity.  Challenge your assumptions and preconceptions.  Dig deep into your heart and your mind, and figure out why you let burdens continue without intervention.  Smash those excuses that keep you from moving toward empathy and solidarity and understanding and care.  Do things that change lives.  Do things that save lives.

And stop saying that god doesn’t give us more than we can handle.  Stop spreading that lie.  Start spreading love.

 

Documented

/ christyterese / Leave a comment

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.

Pills

/ christyterese / Leave a comment

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

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

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

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

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

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

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

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

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

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

What my brain lost and what it held is similar.

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

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

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

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

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

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

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

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

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

I am screaming autonomy.

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

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

I define me.

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

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

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

And I am very proud of who I am.

 

 

 

 

Some things never change

/ christyterese / Leave a comment

I’m sort of a change addict.  I rearrange things all the time.  From the files in my office to the paints in my studio to the furniture in the rooms to the items on my bedside table, I am always looking for another way to place things.  And I often like to pretend that it is for increased efficiency—and sometimes it accidentally brings about increased efficiency—but I think it is just that things need to be constantly in flux for me to feel comfortable.

This is actually the opposite of what makes most people comfortable.  Stability and stasis and knowing that you won’t bang your toes on a credenza that wasn’t there yesterday seem to be more comfortable for most.

I used to attribute my desire for change to boredom.  I just figured I was the kind of person who needed new scenery … and that is true in part.  Highly intelligent and creative people often need movement and change, and lots of us live in mess or chaos as a result.  We feel life more than just live it.  And, like anything that you see or feel each and every day, you become numb to things if they stay the same for too long.

Once my daughter’s teacher thought she would place a brightly colored sticky note to my daughter’s desk to remind her of something.  That sticky note had an effect for about a week and a half.  After that time, the note just became a part of my daughter’s normal desk environment.  It no longer screamed brightly to remember, but it sort of faded into the everyday.

For those of us who feel our way through life, everything fades into the everyday, and we need something new in order to feel stimulated and excited and motivated.

I am one of those people, so boredom is an apt way to describe much of my need for change.

But, over time, I discovered something else about the way I desire change.  It felt like an escape.  It felt like freedom.  It felt like a release from captivity.  And it still does.

I often describe my situation as “stuck”.  I can’t afford to move.  I can’t find decent housing with a voucher that is meant to safeguard the poor from not finding decent housing (another tale for another time, perhaps).  I can’t leave the state without throwing my disability case out the window after 16 months of fighting for my rights.  I can’t change the ways my body and mind react to particular stimuli.  I can’t end the pain that plagues my whole body.  I can’t stop seeing the doctors and therapists who already know and have seen the ways my disease affects me.  I can’t end the awareness of the past events that led to this point.  I feel trapped within my disability and within a particular way of living as a result.

And I want to escape once more.

I keep changing what I can.  The furniture, the nightstand contents, the filing system all move around.  But I’m still feeling stuck.

Last night, while I was attempting to catch up on the washing of dishes (a failed attempt, but a bit of progress at least), I was thinking about my relationship with my mom.  It wasn’t great, for most of my teen and adult years.  We didn’t understand one another very well, and communicating emotion wasn’t a strong point for her, and obeying without question wasn’t a strong point of mine.  We argued as a result.  But last night I was thinking more about how she must have felt when all I wanted to do was escape, and even though I don’t really think my mom floats around my kitchen in some non-corporeal form, I said aloud, “I’m sorry if it hurt you Mom, but I needed to try … I needed to try to be free.”

I hadn’t thought of what I did from age 18 to 28 as trying to be free before, at least not in any real and deep sense.  But I was trying to be free.  I didn’t want to be captive or kept.  And running from place to place and moving from man to man and snorting line after line felt like flying after years of living caged.  It wasn’t a crazy person living out her crazy.  It wasn’t a woman lost seeking a place to fit in.  It was freedom–finally freedom!  And all of those things in all of that time didn’t necessarily serve me well or bring me wholeness and good, but they weren’t necessarily meant to do that anyway.  They were just meant to be the opposite of captivity.

When my little dog gets free of the tethers that hold him, he runs like a motherfucking bat out of hell.  He doesn’t know where he is going, or why.  He doesn’t care.  He just runs, and runs, and runs, and runs.  And there isn’t any catching him.  You have to run past him (which, by the way, sucks for a good runner, so the few times I have had to do so I nearly died as a result) and then convince him that running in the other direction sounds fun, leading him back toward the house or car from which he escaped.  Freedom.  Flying.  Just going because you are finally allowed to go.

I spent 10 years of my life flying in glorious freedom.

And then, I went back to living as others expected or anticipated I would or should.  Because you can only run so far before you tire and need to turn around.  But I still miss the flying.  I still miss that freedom.

There are all sorts of expectations once more, and there is a lot of weight to the conditions of disability and poverty that I am struggling to carry, and there are rules and rules and rules about how you may or may not be when you are dependent on others (and very few of the rules or expectations are reasonable or intuitive or helpful).  And I start to feel trapped and stuck and without an exit plan.  It reminds me of being a child, and not being able to express that really bad shit was going on in my life, and not being old enough or aware enough to leave the situation to which I felt captive.  All the ways I tried to escape that captivity—throwing tantrums, threatening my abuser, trying to run away, becoming despondent, sleep walking, wetting the bed—went unrecognized or were blamed on other causes.

I don’t fault the people in my life who didn’t know those were attempts at escape.  It isn’t easy to understand when you haven’t been informed or educated about such things.  All you see is a bunch of crazy and inconvenient and inappropriate, and you don’t know how to fix it.  And even when I did get the attention of therapists or doctors, they were kinda shitty therapists or doctors, and they did more harm than good in most cases. I wasn’t properly diagnosed with C-PTSD until a year and a half ago, because I had a breakdown/freak out/panic in the right place and the right time, for a change.

The thing about this desire for freedom, however, is that it starts to morph into something new as I age and become more aware.  I still want to run away, but I want to run to a place that brings stability, a therapeutic environment, and release from the debt and dependence of poverty.  Being free looks more like stasis and stability than I like to admit at times.  And I think that I would still rearrange the furniture and the files and the art supplies and the books in this more stable version of freedom, but I don’t think that it would make me feel stuck or captive or without freedoms.  If I had a little house on the beach, just big enough for me and the dog, and the occasional visit from my dad or my daughter, and if I could swim every day and get a massage and take a walk along the water, and if I could write and create and sell my work, and if I could grow a few plants out in my tiny garden instead of on an apartment window sill, and if I could choose the life I want and not be forced into situations that I don’t want, I could feel free in one place, and not ever need to feel the need to flee or fight or struggle toward something else.

I started with a title that implied that things don’t change.  And many things don’t.  But many things do.  And it isn’t true that the more things change they more they stay the same, even if my freedom becomes a little cottage which I own and can settle into for years to come.  Because, while that seems like stasis, it is much different from anything I have experienced in all my years—it is something I choose, without influence and expectation and abuse and appropriate cultural expression and manipulation and guilt and force making me choose (which isn’t really choice at all).

Much has changed inside of me, and in the way I see myself, and in the ways I understand my history and my illness, and in the ways that I act and react because of new awareness, and in the way I treat myself as a result.  But much has not changed.

I still long to be free.

I still want to fly.