Next

I’m not certain if control issues were inherited or ingrained, but my mother was the pinnacle of having things in order, and bits of her need to control all the things all the time were handed down to me, and I handed bits down to my daughter.

It isn’t always a bad thing to want to be prepared.  It isn’t always a bad thing to desire control over a situation.  As a person who felt they didn’t have autonomy and agency at many times in her history—and even in the present moment—I am a big supporter of having some control over what happens in my life.  I like to be prepared.  I like to know what is coming, whenever possible.

But I also know that life isn’t controllable.  Life isn’t boxed up neatly and organized and cleaned up and put into order.  Life is chaos.  Life is dynamic.  Life is unpredictable.  Choose your own adjective—but the point is, you cannot maintain control of all the things all the time.

For almost three years now, I’ve been living in a situation that magnifies a lack of control a thousand times.  It has not been easy for me.

It isn’t that I am just like my mother, and need all the preparations and all the order and seek them in an anxious and worried manner that cannot allow for others to see the internal chaos—the private chaos that all the preparations are meant to hide.  I also have, whether inherited or ingrained, my dad’s propensity for being laid back and letting life happen, while offering peace and calm and love to everyone around you as a counter-measure to life’s chaos.

One of my employers, many years ago, said of my dad, “Dave is the kind of man whose pants you could light on fire and he would say, ‘Hmm. It’s a bit warm in here.’”  And that was one of the best descriptions of my dad’s manner of being that I ever heard.  I’m not that chill and laid back, but I am at least, I believe, half that laid back.

But the other half.  The half from my mom.  The half that wants order and shuns chaos. That half is feeling tortured right now!

The living situation that magnifies my lack of control, and the dependence and humility and trust that not having that control forces me to develop, has, in many ways, helped me become less like my mother and more like my father.  I’ve started letting go of control.  I’ve started asking for help without shame.  I’ve started to trust in divine providence.  But the last few weeks of this living situation have brought out the control freak in the most unflattering ways.

After almost three years of waiting, I am now 25 days from my disability hearing.

25 days.

I’ve waited more than 25 months for this day.

And I am terrified, because I have no fucking clue what happens next.

The other day I emailed the paralegal that is working with my lawyer to prepare my case.  I asked him what my next steps were.  I asked him what I do now—after I dutifully went from doctor to doctor, asking if they agree that I am disabled and getting their detailed documentation on record when they did agree.

The paralegal said I do nothing.

Nothing.

Next I do nothing.

Oh. My. Fucking. God.

I am completely incapable of doing nothing with 25 days standing between me and the decision that determines how, or even if, I survive from this point forward.  I can’t do nothing while a stranger—a man I have never met—looks over all of those detailed documents and decides whether I get the assistance I need to live independently, or whether I am forced into some other sort of situation, where I don’t have the right to the freedom and independence that people who are not sick all the time take for granted.

That freedom and independence might not be granted in that courtroom.  Or maybe it will.

Either way, I don’t know what comes next.

This ominous unknown “next” is looming before me, and I am told that my response right now should be to do nothing.

I’m not doing well with that.  All the parts of me that desire control and preparation and order are screaming out in pain.  All the parts that need to know what to do and need to know how to best prepare for what is coming are feeling tortured.  I forget to breathe sometimes.  There is a tightness in my chest, on occasion, that I can’t be sure is from my current respiratory infection, because I have a suspicion that it is a sign of panic instead.

I emailed the paralegal again today.  I asked him what happens after.  What happens after I am awarded benefits?  Do I get them right away?  Do I have to wait even longer?  Does my fundraiser need to sustain me for two more months?  Eight more months?  When do I get the $21,000 that the state wrongfully withheld from me while they argued that I wasn’t “disabled enough” and could do “some unskilled work”, even though my medical records and my work history told a very different story?  On what day do I feel vindication and validation?

And what happens after if I don’t?  What happens if the judge does not offer me vindication and validation and $21,000 in back-payments?  What happens if I can’t work but the judge says I must?  What happens if I can’t hold down a “real” job for any significant length of time?  What happens when my physical and mental state deteriorate as I lose time for self-care and therapies and coping strategies that are essential to my wellbeing?  What happens when I become what I was three years ago—a bed-ridden mess of pain and mental anguish?  What then?

The part of me that needs to prepare and create order and keep things neat feels like she is being drowned.  She is choking on the unknown as she tries to remember how to breathe.  She is suffering and dying.

The part of me that is laid back and offers peace and love seeks to console her.  She is nearly inconsolable.  No amount of meditation and diaphragmatic breathing and coloring mandalas seems to quell the shaking of her frame.  So, the peace-filled part accompanies the out of control part to my desk.  Together they research and add and subtract numbers, experimenting with all the possible sums and trying to find a way through the chaos.  Trying to determine what the next stage might look like—what “next” might be.

The two parts sit together on the yoga mat, trying to clear my head of negativity and fear and shame and confusion and stress.  The two parts sit together and recount all the things for which I am grateful.  The two parts sit together on the sofa, trying to distract from the chaos by watching Netflix and becoming invested in a fiction instead of hyper-focusing on my reality.  The two parts sit together as I attempt to do nothing, and to go about life as usual—therapy, doctor visits, gym, pool, massage, yoga, meditation, food prep, cleaning, baths, walks, updating the fundraiser.  They try to help me live my life as though it were “normal”, and try to prepare for the worst while hoping for the best.

But they aren’t succeeding in any significant way.

I am stressed beyond comprehension.  I half expect to have a stroke before my court date arrives.  But then the other half reminds me that I have waited for 30 months, I can wait 25 more days.

And the decision on the 21st isn’t necessarily the thing that I fear the most.  It isn’t the thing that might make or break me.  The thing that might make or break me is whatever comes next.

I don’t know if the making or the breaking comes next.

And I don’t know how to prepare for either.

I don’t know how to do nothing.

I am terrified of what comes next.

I’m not sure how to survive the next.  Because I can’t figure out how to be prepared for next.  And I have no control over what comes next.

There is this strange mixture of hope for the future and dread for the future that is happening within my person.  And while I talk about myself as two halves to make the point that both of those are present, I am only one person, feeling all of those feelings, and being both the hopeful and the dread-filled woman, simultaneously.  It is a strange feeling.  It is terrible in many ways.  I feel at odds with myself.  I feel like I am out of control as I fight with my own psyche.

But today I realized that there is reason for hope.  And that reason is my parents.

I get the worrisome and ordered parts from my mother.  I get the laid back and love-offering parts from my father.  And that combination of traits created a long-lasting marriage.  It wasn’t always the perfect relationship, but it was beautiful even through the difficult times.  And it worked.  It lasted until death parted my parents.  Those two parts made a beautiful whole, that endured all sorts of struggles with strength and grace.

My court date falls on the day after what would be my parent’s 48th wedding anniversary.  It comes just three days after the 2nd anniversary of my mother’s death.  The unpredictable chaos of life, and the melding of personalities into a loving relationship are both represented in this week in June.  The caregiver, my father.  The lost mind of one who never stopped striving for control, my mother.  The ways that they stepped and swayed and moved toward and moved back made a dance of life.  It made a dance of the things for which no one could have been prepared.  It made a dance of the struggles, because the two sat together.

I see that which was passed down by my mother and that which was passed down by my father, the two seemingly competing aspects of my personality, and I know that all is not lost.  I know that these two parts can work together to recreate that dance.  To step, sway, move forward and back, and to find the way through even the most shocking and unexpected moments in life.  They found a way.  And I am a part of each of them, so I can find a way also.

Grief hits harder than you might expect in the second year after losing your parent.  I’ve been avoiding that subject lately, preferring to focus on what I need to be doing to get through the next 25 days regarding my hearing, my livelihood, and my important planning for the future.  But today, knowing that I am instructed to do nothing, and that the disability case is out of my hands now, I sink into the truth that it still hurts a lot to be without her—without them together, and the ways that they interacted.  I still have my dad, of course.  And I am so grateful for him.  He is a rock of support that no other can rival.  But I miss my mom.

That is a thing that I was not prepared for.  It is odd, because we had years to prepare for losing her, but I never expected that the mother whom I argued with and struggled to understand and who I strived to please and never gained approval from would be so missed.  That in the weeks leading up to an important moment in my life, I am looking back to the weeks that lead up to the end of hers.  That I would have to look at her picture to remember all the details of her face.  That I would suddenly be relieved that I have nothing to do, because I think what I should do—what I need to do for myself—is to be sad and grieve, and let this season be about more than the dance I am doing internally as I struggle toward my disability hearing, but allow it to also or instead be about the dance of my parents, and the overwhelming emptiness of the space next to my dad, where my mom used to dance beside him.

I’m so grateful that I am made up of the stuff of both of these amazing individuals.  I’m so lucky to be a part of them, and to be their legacy in the flesh.  (As an aside, I am the only one in the family who has a child that carries on the family name—and we are a little bit too proud to be the ones who bear the name of that legacy.)

I still don’t know what comes next.

And I’m still a bit terrified, to be honest.

But having witnessed lives that pressed on through the good times and the bad, in sickness and in health, for richer or poorer, until death parts them, I feel stronger.  I feel a little less helpless and a little more capable.  Because I am the product of those lives.  I am an embodiment of those promises.  So, if they could make it through whatever unexpected trial or joy might be coming up next, I can also do so.

I’ll meet what comes next.  I’ll lean into whatever comes next.  I will overcome whatever is next. Or be grateful and enjoy what comes next.

I am the dance.  The two parts sit together and create a good life out of whatever comes their way.

The two parts sit together and discover what is next.

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Flow

I read an article today that posited that financial blocks are indicative of creative blocks.  So, I thought it probably wouldn’t hurt to try to write a bit—maybe suddenly money will arrive if I put my creative mind to some creative writing.

But moments later, I realized that where my creative blocks are might not be here on this page.  Putting pen to paper (or fingers to keyboard, more aptly expressed) has never been hard for me.  I’m pretty sure that I wanted to be a writer from around 2nd grade.  I didn’t fully know that writing was my passion just a few years after, and it took me about 35 more years to get back to that passion, but I did want it at a young age.  I won’t go into the upsetting details about why I lost that focus, because even I am tired of hearing about the wounds of my history.  What I will say, is that at some point in my development—or maybe many small, important moments in my development—I had that passion pushed out of my mind.  I lost that knowing.

Understand that some of that loss was due to trauma.  You forget who you were before the trauma, they say.  I suppose I believe them.  I formed very little of my personality before I forgot it, so I didn’t have all that much to grasp at and hold onto.  But I know that I loved to do things that were artistic and creative.

I remember dancing.  Always dancing.  I remember singing.  Always singing.  I remember writing stories and poems and making picture books.  I remember sitting in the art room during recess on any occasion I was allowed to do so, and working on a painting or some clay dish.

Unfortunately, I also remember being judged.  And I remember coming up short.

Competition is a thing I hate.  Ask my brother-in-law, the lover of board games, and he will tell you that I am no fun because I never want to play.  That isn’t entirely true.  There are cooperative games that I really like to play, and there are particular groups of people with whom I like to play such games.  What I don’t like, is the measuring stick and the terms “winner” and “loser”.  There are a lot of people who won’t understand that I hate these things.  They might say I am a sore loser, or that I am just not as good a player, or that I identify too closely with the millennials who all get trophies and don’t know how to lose.

None of those are true.

I don’t like the way that certain people judge others, and I don’t like the way the worst comes out in people when competition is put into play.  Hehe.  Pun.

Seriously though…

I remember not having the best picture book in whatever grade that competition took place.  I remember not having the best art piece on any of the occasions.  I remember that my words weren’t honored and placed on walls with gold stars or blue ribbons.  And it isn’t that I am upset that I didn’t win—although as a child that may have been partly the case.  What bothers me about this system of measurement that was constantly reinforced, is that I was really, exceptionally gifted in all sorts of creative arts, but I never won the contests, so I thought that I was bad at what I loved most in life—to paint, and to sing, and to dance, and to write.

Around my junior and senior year of high school, I finally started to understand that the games and the contests weren’t the true measure of skill.  And at that point, I wanted to invest my time and my energy into learning to hone those skills that I somehow, inherently, had in the creative arts.  I said that I wanted to take a photography course, but I wasn’t allowed, because I hadn’t taken Art I and Art II and whatever other requisite courses one needed to pursue an art course.  But I didn’t want to paint fruit on platters, or learn how to shade well in my pencil sketches.  I wanted to take photos.  I wanted to be a photographer.  I found beauty in spaces where many could not, and I feel that I would have been skilled at photographing that beauty, and showing it to the world.  I wasn’t allowed.

I started to dance when I made the dance team in my first year of college.  I don’t know why I believed during this period that I could do things I was never allowed the chance to do when I was younger.  But I tried out, and I made it.  I was ecstatic, and it was amazing.  But the following year, the team that danced at half-time wasn’t a thing, and instead there would be a series of showcases.  The ballet jumps and the spotting during turns wasn’t something that anyone ever taught me.  I never had access to lessons.  I fell in front of all the people trying out, and I felt like the previous year—when I did an amazing job dancing my heart out in front of people—didn’t even exist anymore.  I wasn’t a real dancer.  I didn’t make the cut.

All of these moments—these competitive moments, when I was meant to prove my salt and come out on top—instead turned into a huge lie and a core belief that I held for many, many years.  I wasn’t an artist.  I wasn’t good enough to be on stage acting.  I didn’t even make the annual theater performance program when my own father directed the show.  He said he couldn’t cast both his children, or it would seem like favoritism, and it was The Music Man, so he needed my brother more than me in the cast—boys who love to dance and sing on stage weren’t quite so popular and accepted thirty years ago in small-town, rural America, I suppose.  But, even if he did wish to cast me, he didn’t.  Which made me feel like all those other girls were the talented and pretty and deserving girls.  Which meant that I was not.

I don’t know why competition is a thing.  I don’t know where it started.  I don’t think it ever ends.  But I do know that constantly falling just short of the cut, and not winning the praise and validation, made me stop working in the fields that I loved.  I stopped singing.  I stopped dancing.  I stopped playing the piano.  I stopped drawing.  I stopped painting.

Or, at least, I stopped doing them in public, or anywhere that other people got to judge my work and my skill in any way.  I couldn’t stop doing them altogether.  They are part of who I was meant to be.  I was always, as my little girl self felt, a writer.  I was always an artist.

And shame on each and every person who made me believe that couldn’t be true.  I had a love of the arts.  That alone was enough to qualify me and to give me permission to pursue a life and a career in the arts.

The blocks—the places where my creative energy doesn’t flow—are the doors that I closed on the dancer, the painter, the photographer, the writer, the poet.  The blocks come each time I feel like dancing, but don’t.  The blocks come when I am passionately pounding out a deep and layered piece on the piano, and I hear the garage door next to the music room open, so I quickly stop, put things in order, and rush upstairs so that nobody will know that I was playing—usually weeping as I do, because the piano has a language that can express my despair, my pain, my joy, and there is no other language I know that can do the same.  The blocks come when I look at something I have created, and deem it unsatisfactory, honing in on every possible perceived flaw, even while others are gushing awe and praise for that creation.

The blocks are there because I stopped believing I could be an artist, somewhere between the 2nd grade and today.

I don’t know if letting my creative expression flow will make my bank account attract the funds to pay the electric bill and get me some groceries.  But I do know that letting it flow will do other things that are good and necessary for me now.  I need to trust in my abilities.  I need to believe that what I love matters.  I need to know that no matter what anyone else thinks of my expression, it is valid, and it deserves to have a space in my life and in the world.  My creative side isn’t here to make certain I have scrapbooking group opportunities where I can find respite from caring for the kids.  (Though that is totally a worthy cause, people!  Scrapbook away! No judgment.  I suck at scrapbooking.  Which is kinda ironic, since most of my art is collage work of some sort, so I should be awesome at layering paper.)  I digress.  The point is that we love things because we need them and they need us.  My creative side is here to flow—to pour out upon the earth and to exist there.  And maybe your creativity is in the solving of difficult equations or positing really awesome stuff to prove and disprove using science or setting an amazing buffet before a crowd of people.  It doesn’t need to mean “the arts” for all of us.  But it should be recognized and validated and praised for all of us.

It is hard to put your heart out into the world and have people step on it.  And I don’t think that needs to happen.  Maybe everybody doesn’t get a trophy every time, so the kids still learn that life has ups and downs, and we don’t always get what we want.  But maybe everybody can be recognized, encouraged, and praised for showing up and trying, or for improving, or even for quitting!  When my daughter quit basketball or piano or French class or school, I praised her for knowing what she loved and what she didn’t love, and I praised her for trying, even if it wasn’t the right fit and the thing she wanted to continue to pursue.  And I helped her find the right fit, whenever possible.  (I still owe her a violin, by the way, because that was the right fit, but I couldn’t afford that fit and promised she would get one “someday”.)

I think that letting what naturally flows out from our hearts is usually beautiful.  Even when it is messy and complicated and not perfect, I still think what flows naturally is beautiful.  I’m in the minority with this view, I know.  Most of the people I know consider humanity flawed or cursed or sinful, and we just keep striving to be not that or better than that for a lifetime.  I don’t see it that way.  I think that humanity is stifled and broken and cut off from the beauty that naturally flows by competitions and bigotries and selfish motives that we learn over time.

Think about what you wanted to be when you were a child.  A fireman?  Superman?  A doctor? A mom?  Not many of us would have said “a ruthless investment banker who works himself or herself to death”.  But some of us turn out to be just that.

So, what if our earliest notions of self are actually the purest, but society convinces us that they are not, by pitting us against one another, and telling us that some of us win and some of us lose?

That thinking is very evident in recent weeks.  I’ve literally had people say to me that I am the loser in the game of healthcare. And what I lose is my health and possibly my life.  (Can I at least get a fucking participation trophy before I die, asshole?!)  The idea that some of us win and some of us lose, and that we don’t need to change that because it is the natural order, is one that devastates many, and allows us to harm others without conscience.  That is a terrible idea to foster and encourage!

So why can’t we do that opposite?

What is the worst that could happen, if we encouraged all the kids to dance?  What is the worst that could happen if the world had 80 million firefighters?  What is the worst that could happen if all the 2nd graders were acknowledged for something they loved?

Today, I’m thinking that we should all just let our creativity flow—whatever that means for us.  I would love to see rivers of creating in the streets, and not rivers of blood caused by all sorts of violence.  I would also love money to be attracted to me, and have cash flow mimic that creative flow, but that is a secondary goal.

So, tonight, despite my aching joints and without having the results of my lumbar spine MRI to diagnose a reason not to, I am going to dance.  And should a piano find a way up my stairs, I might pound on that passionately, even if my family members could hear.  And I will likely put my newly cleaned studio to use one day soon and layer some non-scrapbook related paper together to create some art.

Because writing this has definitely helped—even if my bank balance stays the same.  It has helped me to see and understand those blocks, and to begin on a path that removes them.  It has helped me to once again claim the title.  I am an artist!

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

 

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.

 

 

The Song that Never Ends

I feel like shit.

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

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

So, I feel like shit.

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

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

Environmental allergies.

Dust and mold, for starters.

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

And bronchitis is violent.

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

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

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

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

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

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

I get it.

It is the song that never ends.

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

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

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

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

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

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

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

And I am not going to stop feeling like this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It transforms pain into beauty.

It makes beautiful music.

 

Athlete

I’ve never been known as an athlete.  I was once a cheerleader, and spent a brief amount of time on a dance team in college, but those were not considered “sport” when I was younger, but flights of fancy that happened to include incredible feats of balance and coordination.

The first time I went whitewater rafting was the first time that I ever put my body anywhere near the category of athletic.  As I was hurtling down the rapids—of a class far more challenging than I was prepared for, since my sister and I just told the company guiding us down the gorge that we were experienced rafters to avoid the possibility we weren’t allowed to participate—and paddling like a motherfucker, I suddenly realized that my body was capable of great things.  I was an athlete if I could make it down that river without drowning.  I was an athlete if I loved hurtling down that river in that rubber boat, paddling like a motherfucker.

I think in that moment I became a little more brave, and felt a little less “breakable” and fragile.

I’ve always had this strange dichotomy of fragile and strong in mind.  I feel broken and small and like I could shatter at any moment and never be put back together again, in true Humpty Dumpty fashion.  But I also know that there is this visceral and strong animal that resides within, ready to attack whenever needed.  I’m somehow both the predator and the prey.

Today, as I was joking with one of the trainers at my gym about my poor basketball performance in the past, saying, “There are some things no amount of practice can perfect—like my free-throws”, he responded with the assertion that I am an athlete.

When I pressed him for proofs, as an overweight and disabled woman who feels like shattering pretty much all the time lately, he said that all the proof anyone needed was to watch me work out.

Let me be clear.   By “work out” he means me using a band and my own body weight to build atrophied muscles and upper-body strength.  I don’t do some crazy CrossFit shit like some of my friends.  I don’t run.  I don’t use weights.  I don’t train with somebody yelling at me to push harder and go farther.  I do small and metered movements, always checking and double-checking that my form is perfect and my body isn’t taking on too much stress or strain.  I am slow.  I am unbalanced, and need my trainer to catch me on occasion, because I have toppled over completely.

But here is the thing:  I am an athlete.  I approach this process with the determination and the drive that any athlete would, even though my body places so many limits on my performance.

I am a girl with fight, even when I am frail and fragile.

So, I guess what I am trying to say is that there isn’t really a dichotomy at all.  What I am trying to say is that I can be both things.  I can be fragile and I can be fierce.  And I can even be those things simultaneously.

Some days I feel like I am small and porcelain on the inside, but tall and steel on the outside.  And that isn’t always a healthy thing, because sometimes I hide the vulnerability too well, and give people false impressions.  But, often, it is a helpful thing to be both fragile and fierce.  Because I don’t know that I could face the day if I didn’t have some shell that was protecting the precious parts at the core.  I don’t know that I could walk my street, take the bus, sit in waiting rooms, see doctors, have tests and imaging and procedures and surgeries, pick up groceries, or go to the gym without that fierce part of me.  But I also know that the soft and subtle and sensitive parts of me give me the compassion and humility that is so needed to be a decent and loving and caring person.

Strength can be weakness.  Weakness can be strength.  It all depends on the situation, and the perspective, and the purpose, and the mindset.

And I can be both weak and strong.  So can you.

It took me a bit to embrace what that trainer said today.  I didn’t want to immediately agree that I am an athlete.  I wanted to protest and to point to all the frailty and disability and challenge that resides in my life and my person.  But when I considered it a moment longer, I knew that he was correct.  I knew that the strong, hard-working, brave woman that I am also shines at moments, and that I don’t only have that frailty and disability and challenge.  I also have milestones reached, dangers navigated, brokenness healed, and struggles overcome.

I will always be disabled, barring several miracle cures being discovered in my lifetime.  But I will also always be the athlete.  I will always have strength of mind and will.   I will always have a strong sense of justice.  I will always seek to protect what is good and eradicate what is unhelpful or damaging.  I will always approach my wellness and my loves and my passions with drive and determination.  I will always be a fierce fighter.

We like to box things up, and divide and contain things.  It seems neater somehow, and less messy.  But life isn’t really that way.

Life is this messy mixture of the good and the not so good.  Life is not dichotomies, but a doughy ball of mixed up ingredients that sticks to your fingers.  It isn’t meant to be broken down and divided and put in the appropriate category.  It is meant to be the mess.  And that means that the fragile and the fierce can be one and other and together and apart and melded and separated to infinity, but they are never going to be all or none.  They will stick to my fingers.  I will sometimes feel one way, and sometimes feel another way.  And sometimes I will feel both.

And the people who are in my life and in my inner circles will need to understand and acknowledge and accept that I am both things—the athlete and the disabled woman.  I am both, and I won’t cease to be both.

Right now, I don’t feel very athletic.  I have a headache.  My shoulders and quads are screaming in pain in tandem.  My hand and wrist are bruised.  My facia is tight in my right leg.  I am coated in pain relieving cream, and it isn’t relieving much pain.  I desperately need to stretch well, but I’m afraid if I lay out on the yoga mat, I will just fall asleep there and wake with a ridiculous patterned face too late to attend important meetings tomorrow.

Right now I feel small and broken, and a little like I might break down.

But I’m fine with that.  Because I know that my fierce self is in there somewhere beneath all of the uncomfortable surface.  And when I need her, she will emerge.

But, in this moment, the only ferocity I foresee is the fight over the covers and space on the bed between myself and the dog and the cat. I will win that fight.  I’m committed to winning that fight every night.

So, I head toward my bed with the aches of the day, but I know that I am and will continue to be the athlete.

Fight hard, my friends.  But don’t be afraid to fall and to fail and to freak out as well.  Be a complicated mess of dichotomous dough.  Life is better that way.

Full House

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’ll miss my privacy a little.

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

Even while I suck at poker.

 

Sleepwalker

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

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

There are many.

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

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

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

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

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

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

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

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

The nightmares I can make go away.

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

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

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

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

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

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

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

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

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

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

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

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

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

But that little girl fought hard to survive.

And I am going to keep fighting her fight.