And the Storm Rages On

It isn’t easy for me to be vulnerable.

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

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

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

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

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

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

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

                I’m praying for you guys…

And under that was a meme that said:

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

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

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

“Lots of people” have disabilities and they…

“Lots of people” are divorced and they…

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

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

Bullshit.

I call bullshit.

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

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

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

Gut fucking punched.

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

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

But the storm is another story.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I keep on facing it.

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

But I face it.

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

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

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

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

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

Robert F Kennedy once said:

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

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

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

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

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

 

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

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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.

 

 

Wide Awake

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

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

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

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

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

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

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

Morning is another story.

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

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

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

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

Let me elaborate.

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

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

Here is why:

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

I’m wide awake.

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

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

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

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

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

I’m wide awake.

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

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

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

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

I am wide awake.

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

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

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

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

But there was also light.

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

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

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

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

I’m wide awake.

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

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

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

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

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

There’s more to me than people know.

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

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

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

Muchness

There is a line in Lewis Carroll’s tales of Alice’s Adventures that reads: “‎You’re not the same as you were before,” he said. You were much more… muchier… you’ve lost your muchness.”

I’ve often liked that line, spoken to Alice about the ways that she has changed.  And though the point of Carroll’s writing was to make nonsense seem like sense and sense like nonsense, defying logic at every turn, I have always identified with the nonsense in a really lovely way.

I am Alice, in so many of these moments.  She is sort of tumbling through Wonderland in this state of shock.  Nothing makes sense.  Everything is literally and metaphorically topsy-turvy.  And what she believed to be true and correct and assumed by all, is not at all true and correct and assumed.

It is disorienting to discover that what you believed was sense is, instead, nonsense.

There are plenty of times in my life when I could relate to this disorientation.  There are many instances where the things I once believed turned out to be wrong or insufficient or nonsense.  And that isn’t an easy process to go through.  And it is a process made more difficult by those who are around you supporting the thing you once considered sense and standing in opposition.

In many ways I have gone through transformations over the course of my life.  And many of them are good changes, but some are or were not positive.  The trip that Alice takes doesn’t just seem to turn her into someone new, however.  It takes her back to who she was in her early years.  It takes her back to the space where nonsense is sense.  It takes her back into imagination and wonder and fun and passion and interest and joy.

And getting to that destination isn’t easy, but it is necessary.  If she doesn’t find her former self, the battle will be lost, and everything falls apart.

I think that this idea of a previous stage in Alice’s life as the best and most necessary stage is telling.  That she once found this strength within her, but now lacks it, expresses a lot.  It helps me see that there was a person I was, and a way that I was being, that might have been better or more necessary, even though it was an earlier and less “sensible” stage and state of being.  And for me, much of that ties to my imagination and my early years.

There is this space in our development that allows for all possibilities.  There is a time, especially in early childhood, when we are allowed to believe wholeheartedly that anything is possible and all the things are good and that we are safe and strong and able.  And that time doesn’t last long.  That time is cut short when we start to see the sense as more important than the nonsense.  We start to be told what we can and cannot accomplish.  We start to feel the weight of failure.  We start to play less and work more.  We lose touch with that fire that burned in our hearts when we believed that all the things were possible, and that nothing was beyond our reach.

I think this is the muchness that Alice is meant to rediscover—she needs to find that space where all the things are possible and nothing is beyond her reach.  She needs to believe in her strength, her will, her ability, and herself.   But not in her reason.  In her heart.

Several years back I was living in a less than stellar situation.  My cocaine addiction was being fed in the midst of a bad relationship.  I didn’t really like myself or the events that were happening or the ways that life was unfolding.  And I started reading and working through a book called Something More.  It had all these exercises within the pages that were designed to remind you who you are at your core.  Through the process of engaging with this book, I stopped wanting to engage in the life I was living.  I truly did start wanting something more.  And eventually my desire for more created a chasm between my partner and myself, and our relationship came to a violent end.  But that end was a catalyst for a new beginning.  A remaking based on a remembrance.  A memory of who I was and what I wanted in early childhood began to fuel the creation of this new way of being.

It was a much improved way of being, to be sure.  And it was a good way of being for some time.  But, today, I find myself back in a space where I want more, and I feel like I have lost a bit of myself.  I have disconnected from the desires of my heart once more, and fallen into the trap of being sensible.  I have lost my muchness.

And now the question that remains:  How do I find it again?

Alice falls down a hole and ends up in crazy town.  I don’t think I want to fall down any holes and end up in crazy townBut falling down holes and landing in nonsense isn’t practical for most of us.  We need to find another way back to our muchness.

The book Something More definitely helped me find my muchness in the past, but I don’t know that repeating that process will yield a better or different result.  And the path to nonsense isn’t one that many embark upon, so there are not a lot of guidebooks to set you on your way.

So, for lack of better options, I have gone back to what apparently served us well as children—I have been incessantly asking, “Why?”

I remember when my daughter went through this stage.  It was annoying and infuriating and beautiful.  I quickly discovered that if I gave her the most detailed scientific explanation possible, she stopped repeating the question.  For some time, I thought that I had quieted her questioning by confusing her.  But, after further consideration, I realized that she wasn’t quieted because she was confused, but because the answer was believable. It was the whole truth.  She knew the difference, as a toddler, between me pandering to her and me telling her the answer to her questions.  And some of my answers would, at a later date in my life and hers, change.  But she could tell when I was speaking what I believed to be true and when I was giving child-sized explanations that didn’t tell the whole story.

So, to get back to myself—to rediscover my core desires and beliefs and find my muchness—I am asking why until I get an answer that feels fully true and wholly believable.

That isn’t an easy process.  I feels a bit like falling down a hole and landing in crazy town.  And constantly questioning your reasons for beliefs and actions can, at first, feel like it is breaking you in pieces.  It feels like you don’t and can’t trust yourself.  It feels like judgment, if you come from a background or current environment that tends to be judgmental.  And it can be really uncomfortable.

But when you keep questioning—when you continue to dig until you get to what feels like the true and full answer to the “why”—you begin to feel stronger and better and more confident in what you believe and in how you choose to act.  It takes time.  Lots of time.  And it is worth every moment of that time.  Because it is really easy to become a believer of the easy answer and to follow the path of collective “sense”, but that collective and simplistic way of approaching the world may be (as it was for me) in conflict with your deepest and truest desire.

My nonsense is better than the world’s sense.

The creative, empathic, passionate, adventurous, strong woman that I am often clashes with what might be considered common sense.  When I follow my heart I end up moving 2000 miles to a new city with no job, no home, and no acceptance letter to the school I hope to attend.  When I follow my heart I end up in the ghetto surrounded by a strange mix of chaos and community.  When I follow my heart I break up with great people to pursue a connection more passionate and powerful than the perceived “Mr. Right” offers.  When I follow my heart my business card reads “Author” and “Artist”, not M.Div.

When I follow my heart I exhibit all sorts of “nonsense”.  I anger people.  I frustrate people.  But I connect to me, and to my understanding and my desire and my core belief, in amazing ways.

I find my muchness.  I get muchier.  I find me.

And we can debate for a millennium the ways that who I am may or may not be “wrong” or “bad” or “immoral”.  I don’t really care to do that, but I always invite civil discussion and dialogue, so I will do so if it seems productive.  But that debate won’t likely end with me changing my view, because the view is formed by the constant questioning and the finding of my muchness.  I’m not going to give that up easily or quickly. I’m going to hold on to that muchness and seek to always follow my heart.

And that might look like nonsense.

I’m totally happy with it looking like nonsense to others, if it feels like the deepest truth to me.  And the philosophical and theological definitions of truth don’t need to be addressed when I look to my muchness.  Because no matter what moral or philosophical dilemma I am faced with, I will still look to my heart, my understanding, my experience, and my study to find the truest and most complete answer.  That might not be the answer you prefer, but I am not made unique in order to become mundanely accepting of someone else’s views.

I am made for my muchness.  I am made to live in it and with it and through it.   I am made to use it to create a better world, to offer new ideas, to live with gusto, and to turn the world on its head and make you feel like you fell down a hole into crazy town, so that you too can investigate, pursue, and live out your own muchness.

It will look different for each of us. Because the truest and most complete answer to all of the “why’s” won’t always align.  We are different people, with different knowledge and experience, and different hearts.  But that doesn’t mean we cannot live together in harmony.  We can do so, if we simply respect and honor the muchness of others—their opinions and beliefs and understandings and experiences and hearts.

I got into an argument with my sister the other day.  There was voice raising and abrupt hanging up of phones involved.  It wasn’t pretty.

Afterward, I continued to ask “why”.  Because her heart says something that my heart cannot.  And my heart says something that hers cannot.  This is true because we are different people, with different experiences and understanding.  But it didn’t break our relationship.  In fact, it might grow all the stronger after the lengthy text messages following the argument that worked to express love and commitments to listen to one another’s needs more fully and respectfully.  But when I sought out the why, I could see her perspective clearly and, simultaneously, know that I am firmly rooted in my perspective for really important reasons.  And while my perspective feels like nonsense to her, it is sense for me.

So, I am holding on to my nonsensical muchness, with the confidence that I will continue to investigate what feels most true and whole, and with the knowledge that my views make others feel, at times, like they fell down a hole into crazy town.

I can accept that.  And I can try to lower them into crazy town gently and with kindness and compassion.  But I can’t give up my muchness.  It takes such work to find it and hold it.  Alice couldn’t hold her heart and her imagination in high regard.  She lost her muchness.  And so have I, but I am regaining it.

I am letting the topsy-turvy feel like home.  I am allowing my own heart to speak.  I am filling life with what I love.  I am returning to the strength within, letting my imagination run wild, embracing the way that I have been fashioned, loving who I am, and continuing to seek out the most complete answer to the question, “Why?”.

I am opening myself to the nonsense, and refusing to be confined by the restraints of the status quo.

I am becoming muchier.  I am finding my heart.  I am gaining something more.

I am embracing my muchness.

 

 

Silence

The news tells me to take a moment of silence at 6:00 pm.

And I will do so, in honor of the 50 people dead, and the others still fighting for life.

But I can’t remain in silence.  Not this day.  Not in this moment and after this event.

I need to cry.  I need to scream.  I need to freak the fuck out!

And so do you.

This cannot happen anymore.  It needs to end.  Gun control vs. protecting yourself needs to be seen as what it is:  Complete Bullshit!  50 people died, with an officer on site … apparently after the officer already fired shots at the gunman.  That gunman bought guns, legally, after being considered a possible terrorist on multiple occasions, according to NPR, and only days before this terrible event.  And that should not have happened.  That should not be able to happen.  That should never have been possible and it should never be considered acceptable.

Look, you can argue all you want, but that won’t make it necessary for anyone in the United States of America to own an assault rifle—EVER.  And your excuses of hunting or protecting your family are not valid.  No research shows that you are safer with a gun.  All of it says you are more likely to die from a gun if you own a gun.  Some studies say four times more likely.  And hunting I have done.  You need no more than a shotgun to make one hell of a dead beast.  And a shotgun is actually preferable if you hunt different sorts of game. If you can’t manage it with a shotgun, you are a shitty hunter anyway, and should probably just give it up.  And, for that matter, you don’t need a gun at all.  If you wanted to remain true to the hunting roots of the country, then you would fashion yourself a bow and some arrows.  If you are hunting for meat, great—as long as you are doing so legally and as safely as possible.  If you are hunting for sport, you are a disgusting excuse for a human in the first place.

Yep.  I said it.  Said it all.

And I am going to keep on saying it forever.

But the thing I need to say even more loudly than the gun control things. (And that shocks even me, because I am a champion of gun laws and constantly telling you that my neighborhood needs you to care about people being shot here, not about hunting or protecting from imaginary threats somewhere else.)  What I need to scream and cry over is that this happened at a gay club just days before my own city begins to celebrate Pride.

And there has been no official connection made at this time between the gunman and the gayness.  There is not, it would seem, any information to state that this was anything but a randomly chosen Latin Night packed with people who may identify in some gay, lesbian, transgendered, bisexual, asexual, queer, gender-queer, pansexual, sapiosexual, intersex, or other than strictly heterosexual way.  (Feel free to add your identifiers in the comments if I missed you.  I’ll make sure you have representation next time I approach the subject.)  But the fact that there is no known connection doesn’t mean it isn’t connected for me.

It is connected for me.

It is connected for me, because while I am not an “out and proud” anything, since I have yet to fully define what my sexuality might be, I identify as something other than strictly heterosexual.  I identify with this group and this cause and this marginalization and this struggle and this attack whether the gunman intended to target me or no.  Because how can you not see violence against a group you identify with or as in a way that makes you feel like a target?

My first real “introduction” to gayness came in a sad form.  My cousin had contracted HIV, and he was dying of AIDS.  I’m not sure if having AIDS gave him the strength to come out, or if coming out was legitimized by him having AIDS.  But I don’t think that in the early 90’s he would have come out to his hyper-religious, right-wing relatives without the HIV being part of the equation.  I can’t imagine a scenario where he would be treated with anything but disdain if he didn’t have the added “bonus” of being near to death.  You can’t be mad at somebody while they are dying.  You don’t scream at people who are dying and accuse them and call them names.  The dying part outweighs the gay part.

But the fact is, when I was a sophomore in college and would tell people at my Christian liberal arts college that my cousin was dying of AIDS, the ONLY response that I ever heard leave their lips upon hearing that news was, “Is he gay?”  Nobody who didn’t know the man seemed to give a crap about the dying part.  They wanted to know if he was disgustingly, salaciously gay.

And he was.

And I loved him no less at any moment because he was gay.

He still holds the title for favorite cousin on that side of the family.  And my daughter was named in his honor.

At that time in my life, sexuality was not the only way that my religious leanings and my life were crashing into one another in annoying and disturbing ways, so the situation with my cousin wasn’t something that I would dwell on.  But it wouldn’t be many years later that I started to wonder what the heck was wrong with me, because I felt in love with women.  And that couldn’t be right.

I’m not sure why I thought it couldn’t be right.  I didn’t mean that in a good vs. evil kind of right, but just in the sense that I didn’t find it believable.  I liked men.  I liked sex with men.  I had lots of sex with men.  And yet, I fell deeply in love with a young woman.  She is still counted among the most loved and most influential and most important people in my life’s history.  She was everything.  She was amazing.  She still is, I think.  And until/unless she reads these words, she might have no idea that she was my first and truest love to date.  We never had a sexual relationship, but I was never afraid to curl up next to her and be held, or to kiss her lovely round face and rub my hands over her bald head and feel all the good feelings that could ever be had.  She meant the world to me.  I sacrificed much for her, and I would do it again a thousand times over. And I never knew that I was in love with her until many years later.  And I never voiced it until now.

Because it seems wrong to not say it.  It seems wrong not to tell you this story of my life and my development and my movement from straight to queer after what happened in the early moments of this day in history.  It seems wrong not to align myself openly, distinctly, and deeply with every person who has other than the heteronormative standards our society espouses as correct and righteous and good.  Because any society that can still hold on to judgment against love and hold on to personal safety over and above the safety of all others, is shit.  And I want no part in it.

But this is the society I live in.  I can’t leave—I haven’t got the means to get to Canada or the Netherlands, much less take up residency there.  So, if I can’t leave it, I must change it.  And I start by ending my own silence.

I have alluded to the fact that I am queer on several occasions, but I have never been overt in claiming the queer as my tribe.  I have deliberately been vague at times, because there are places and people who are not open to a lifestyle that isn’t heteronormative.  And because I pass as heteronormative VERY easily (some would even call me a hedonistic, man-devouring, slut!), I don’t need to be out.  I don’t need to use the word “partner” and make you question my sexuality.  I don’t need to hold hands with a woman, or get married to a woman, or even date a woman, ever.  And that is because I have the choice.  I’m not a lesbian.  I’m not gay.  I love men AND I love women.  So, I could live my whole life without ever expressing any interest in women.

Except I can’t not express it today.  I can’t pretend that I am “normal” and go on living while 50 people die while others celebrate Pride.  I can’t stand by and watch that happen and not be broken into shards and weep.  I can’t stay in a closet of convenience while my best friends in the world come out to me, because they don’t have the choice I have.  They don’t love both men and women.  And in the eyes of the religious or the right-wing or the tea partiers or the whatever, they love the wrong gender.

So, I am taking a stand today.  I am voicing it.  I am making my public declaration and letting the world know, in no uncertain terms, that I am NOT strictly heterosexual.  And whether I am pansexual, or bisexual, or sapiosexual, or something entirely new and different doesn’t really need to be flushed out and finalized for me to take this stand and make this declaration.  All you need to know for now is that I don’t stand with the LGBTQIA+ community because I am empathetic, though I am.  And I don’t stand with this community because I am committed to equal rights and human rights, though I am.  But I stand with this community because I am a PROUD part of this community.

My darling Kaytebug, I was in love with you.  Rachel, I spent half of yoga class lusting after you.  Kate, your brain made me want to hold on to you and kiss you for a lifetime.  Jess, I would marry you.

And I didn’t know all of that at the time.

There weren’t any models for lesbianism around in my sphere until Ellen. Willow came along too late for me to have had a teenage breakthrough based on her love life (though many of my friends loved that Buffy character best primarily because they could identify with her love life).  And I am not a lesbian, so there was no reason for me to consider why I only liked women, because I could just spend my time dating, marrying, procreating with, divorcing, living with, and having sex with men.  I still can (excepting the procreation part—I’m almost 42 and haven’t a uterus).  But I am to the point where I won’t.

Not that I won’t be with men.  I absolutely will.  But I will also allow myself the freedom to be with women.  Or smart people.  Or dog lovers.  Or whatever qualifying aspects I might wish to place upon my sexual preference at some time.

But the thing that I needed to say today—the thing that ached to be said—was that I am one of you/them (depending on where you place yourself on the Kinsey scale).  I am one of you, LGBTQIA+ community.   And I am not one of you, hating-upon-people-and-judging-love-as-sin community.

I am queer and proud.

And I will not keep it hidden and will not be silent.  I will speak my truth in solidarity and strength.

And I will mourn and rage and fight against attacks like the one today with my full voice.  I will chant and sing and march and yell and I will refuse to stop until change comes and lives are protected and the NRA is not.  I will refuse to stop until it is no longer shocking or disappointing or strange for anyone to come out—and coming out won’t be a thing, because we will all be able to live in our truth, and see models of our sexuality, and accept ourselves as we are without being questioned and without being attacked.

I won’t be silent until my friend can bring the love of his life to weddings.  I won’t be silent until everyone I know has safe access to the bathroom of their choosing.  I won’t be silent until the disabled and queer intersection is recognized.  I won’t be silent until people accept my sexuality as equally normal with heterosexuality—because it is normal.  It isn’t weird or wrong.  And you cannot find an argument strong enough to discount what I know in the core of my being and experience every day—that gender and sexuality are fluid for many of us, and fixed for some of us, but never a reason to hate or berate or discount or deny the rights of others.

I won’t be silent until my society is safe from both bigotry and gun violence.

And you shouldn’t either.  Because you should be empathetic, and you should be committed to equal rights and human rights.  Everyone should.

Make some noise for a good reason.

Stand in silence and solidarity for a moment, but then scream your solidarity from the rooftops.  And don’t stop until change happens, and we live in a society of equals, devoid of senseless attacks upon one another, and supportive and loving and caring and kind … and potentially hoarse, because we will have been screaming our solidarity and our identity and our passionate pleas for justice from the rooftops.

Plans

Yesterday I received a rude message.  It made accusations against me, because I had posted on Facebook both an update to my fundraiser, requesting donations to pay bills in May, and a request for pictures of items my mother had painted, to utilize at my tattoo consultation.  In the mind of the one offering the rude message, these two things were linked, and I was asking for money to pay for “luxuries” like tattoos.  This is untrue.

And I could probably create an entire book about how paternalistic judgments of how the poor are “allowed” to spend their very limited resources are completely unnecessary and unwarranted and unwanted.  Trust me. The poor have a far greater understanding of thrift and priority and hard work and collaboration and kindness and care than most people.  Until you can hold a single $5 bill in your wallet for two months without spending it on anything, or furnish a household using only the items others discard, or own a wardrobe where every article of clothing was purchased on clearance or secondhand, don’t tell someone with limited resources how to use their money.  They know far more about money and value than you could imagine.

But I won’t focus on the aforementioned paternalistic judgments today, because what I have been pondering more fully is the idea of making plans.

The tattoo artist I met with last evening is booking appointments for January right now.  If I choose to have him do this tattoo (which will be an amazing commingling of what I had imagined as 2 tattoos), that honors my mother and my daughter and covers most of my right arm, I will need to wait until next year before any inked needle pierces my skin.  So, last night we talked about design and created a plan.  I spent no money.  And I used the Facebook comments as a forum for explaining that I had spent no money, nor would I spend fundraising money for tattoos, or any other personal entertainment or luxury items.

But later I was thinking about how great it is that I am even making plans for next year.

When you have as much disease plaguing you as I do, and when you have so few resources that you aren’t sure how you will make it to next week, you could posit that plans are something superfluous, and that the present moment is the only time and place where the focus should lie.

I think that would be a sad position to hold.

Please don’t misunderstand. I work very hard to live in the present moment—to put the past behind and to reduce anxiety or worry that comes from looking forward.  I love the present, and being present in each moment.  Mindful living, where you fully embrace and enjoy each moment as it is, without judgments or adjustments, is living that I am working toward every day.  I meditate, and color mandalas, and do yoga, and work to taste my food rather than devour it, and allow all sorts of sensations and emotions to arise and coexist and leave without trying to change them.  Being mindful in the present is extremely important.

But the future, and living toward it, is also a beautiful thing.  I sometimes wonder if my life will go on for many years, or if my days are short in number.  Especially lately, in the face of testing for early onset Alzheimer’s disease, I think about what my end might look like.  And while I am not worrying over it, and will accept my end with as much grace and compassion as I am able, no matter what happens, I love the idea that I am still planning a future.

I am planning a wonderful future!

I was browsing in a boutique last night.  And the first thing I said to the sales woman when I walked in was, “I have no budget for clothes right now”, but that wasn’t where we left things.  I also told her that I love every outfit that comes up in that boutique window, and I nearly give myself whiplash as my bus goes by the shop, and that one day when my finances are better I will definitely be in to purchase some clothes.  As the conversation continued, at one point I commented, “I in no way believe that my past or my current situation define what happens in my future.  I absolutely believe that I will have better circumstances in the future than I have today.”  The shop keeper echoed my statements, and we had a lovely philosophical discussion about the practical subjects of our lives.  And that moment was filled with hope.

Later, while I was walking down the avenue, I reflected on that conversation, and on the earlier tattoo consultation.  I decided that plans are a sort of miracle for me, and likely for people with situations similar to mine.

I cancel plans often.  There are many days when my health hijacks everything and leaves me in a state where I cannot do what I had planned to do.  But despite the fact that I cancel often, I keep making plans.  I could sit at home every night rather than disappoint others and upset calendars with rescheduling.  I don’t.  I keep placing meetings and social events and mating rituals into the little boxes that frame my time, even when I know a good percentage of those boxes will later be altered.  I keep living, even when life isn’t easy.

Realizing that I keep living in these little ways brought up thoughts of long-term planning.  And I also noted that I have long-term plans.  I plan on having a home filled with things and people and animals I love.  I plan on growing old.  I plan on getting married, or living in a long-term partnership.  I plan on being near the beach.  I plan on having resources.  I plan on finding a way to create art that funds my existence.  I plan on having enough and not feeling any lack.  I plan on having a full and rewarding and beautiful life.  I plan on being covered in tattoos!

There is so much future hope in the way I live today.  And, interestingly, I find that the more time I spend focused on being present in this moment, the more positive my plans for the future become.  The more meditation and mindfulness exercise and mandala coloring I do, the more full and rewarding and beautiful my future life seems.

A few weeks ago I had a date with a man, and when we eventually got around to setting a second date, he followed up the planning with a “we will see what happens” comment, that sort of felt like it gave him permission to flake out on the second date.  At the point when he began to flake on the second date, saying he was still stuck at work, I abruptly ended my connection with him.  I didn’t do it to dump him first, or because I thought he didn’t like me, but because he seemed to be in this space where “we will see what happens” trumps “we will”.  I didn’t want to be in that space with him.

I want to live in a space where planning for a great future happens, and speed bumps are slowly and carefully overtaken, but that doesn’t make me turn away from the fabulous things I see ahead. I want to live in a space where the best and the most and the loveliest are assumed.  I want to plan for a life that is outrageously good.  And I want to put all sorts of energy into the present, in order to fight for that future.  I don’t want to see what happens.  I want to shape what happens.

This week has been filled with conversations with a lovely woman.  And she and I have been looking for a time and space where we can have a first date.  And while there are no plans set in stone, and no little boxes on the calendar that currently hold her name, we both see only a future where we get to spend time together.  “We will be in touch.”  “[We will] talk soon.”  “We will find a good spot.”  “We will do that another time.”  “I will teach you about that.”  “I will show you when I see you.”  “I’ll tell you that story when we go out.”

A future planned together, even without definitive plans, is far superior to not committing to anything that might sound like a plan for a shared future.  And a future planned with good things and fullness and love is far superior to waiting to see how things transpire and what life hands you.

For many years now, I have been a “we shall see” type of person, who would wait for what life handed her and then cope with the consequences.  But the last couple of years have brought about something new.  They have brought out the “I will” person.  And she plans for the best possible future, even while the present threatens to overwhelm her and the past pulls at her ankles, attempting to drag her underground.  She assumes that better things are coming.  She believes that life will offer her more.  She knows that the divine wishes her survival.  She knows that she is allowed to—meant to—thrive. She makes plans.

I make plans.  And they are not based on what I currently see around me.  They are based on what I know lies within me.  And what lies within offers all beauty and fullness and goodness and grace and love.  That is the future I am planning toward.

So, on a day next year, I will have Joseph add some fabulous ink to my right arm.  And I will pay for it with money I have earned, either through my slow and steady work or through my long and arduous fight for disability payments.  And I will shop in that little boutique, and take some of those coveted clothes from the mannequins in the window and put them on my body.  And I will weigh less and cope with my illness more. I will be more self-compassionate and I will trust and love others more than I do today.  I will have an amazing partner, and get married in a pink dress, and live on the waterfront, and travel to beautiful places and have money in my bank account and on and on and on…

Because I plan to live the best and most treasured life I am capable of living.  And even with over twenty forms of illness to live with, I am confident that I will be capable of living in amazing and wonderful ways.  If at some point those plans need to be cancelled, so be it.  But I’m not going to cancel a beautiful life before I have planned one.

I’m going to plan one, and do my best to see it through, with every little box of time containing something or someone amazing.

With every little box marked “LIVE”.

Documented

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

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

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

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

Gaaaahhhhh!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bring on the paperwork, world.

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

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