disability

I AM PRO-THRIVE

/ christyterese / Leave a comment

Recently, I have noticed that many people on Facebook have a purple banner at the bottom of their profile picture that reads, “I AM PRO-LIFE”.  

 

Now, I am not one to condemn free expression, since I love my own and hate when people try to silence me.  But those little banners annoyed the crap out of me after a while, and I needed to say something about them.  But I chose to say something here, instead of saying something on my Facebook profile, because I thought that my response required more explanation than a few sound bytes.  It required something more fully reasoned and more fully expressed–with some history and some anecdotes, perhaps.

 

And as I started firing up the Chromebook and getting ready to respond,  the first two songs on shuffle play were Unwritten by Natasha Bedingfield and All I Want Is Love from A Great Big World, which just seemed to be signs from The Divine that I was on the right path writing this here.  

 

I am not “pro-life” any longer.  Lots of people assume that is because I am liberal.  And I suppose, in many respects, I am.

 

But blanket terms like “liberal” don’t always describe what we think we are describing, and I would call myself progressive, not liberal, as a point of fact.  Because I don’t agree with things along a party line, and am an independent voter, based on whatever and whomever I think follows what I believe is “right”–ethical, beneficial, and based in love, beauty, and truth.  

 

This is the point where lots of people want to yell comments about killing babies not being ethical, beneficial, or based in love, beauty, and truth.  But that assumes a lot of things. That assumes that you believe life begins at conception–which I don’t think is a true statement. That assumes that our society deems all life equal–and it doesn’t.  That assumes that “benefit” and “love” are seen through the eyes of a fetus and not a pregnant woman–which I don’t believe it should be or can be, exclusively. And I understand those assumptions because I used to hold them as facts to be demanded, not assumptions to be challenged.  I used to be pro-life and a supporter of anti-abortion causes and rhetoric. I hope that I will be forgiven for my narrow-minded, single-focused, self-righteous stance at that time in my life. Because I should have challenged my assumptions and listened to the stories of others and wondered at the courage of women who walked beyond a line of picketing jerks to get an abortion, and why it was so important for them to make it through that door–because it couldn’t be that they were just liberal Jezebels with no love in their hearts, if I had stopped to think on it for a few seconds.  There were really good reasons. But I didn’t stop to consider those reasons for far too long.

 

I’m not entirely certain when the break came for me.  It was a gradual understanding that things couldn’t be as I believed when I was back in high school and my first year of college.  Maybe part of my consideration of women’s choices being valid came because I started losing my own fetus on a regular basis. One live birth out of six confirmed pregnancies–and a couple of suspected early miscarriages where I missed and then had heavy menstruation.  My body killed one in six babies, at least, on its own, without any interventions. And that takes a toll on a woman, even when she doesn’t particularly want to be pregnant or give birth. Then the child that survived did so at the most inopportune time. And I love that daughter with every fiber of my being, and didn’t consider abortion for a moment of my pregnancy with her, but I did learn the challenges of adoption agencies and the choice that is offered to many women as an “opportunity” to place their child in a “loving family” that can “better meet his or her needs”.  

 

I called bullshit on adoption.  I would hear many more stories that called bullshit on adoption later in my journey, but most of you won’t like to hear those stories.  You prefer the idea that adoption is always good people saving helpless children from lost souls. Bullshit. It’s terribly corrupt–especially when it involves children from overseas–and it is damaging for children in significant ways, but even more so for parents.  The suicide rate for birth mothers is outrageously high, and their risk of substance abuse AFTER placing their child (not before) is also much higher than that of the general population. Placing your child harms you in serious and debilitating ways. But we don’t like to talk about that.  We like to pretend that adoption is all about the babies and saving their lives. I’ve had more adopted children, as teens or adults, tell me they would rather have died than been placed where they were, than I can count on my fingers. But nobody wants to hear that part of the story. Nobody wants to hear that we took a baby and placed it with abusive parents who ruined the life of that boy or girl in really terrible ways.  And we can’t say, “At least they are alive!” We can’t promise that not living would have been worse. We cannot prove that hypothesis!!

 

I’m always struck by the instances in the biblical text where there are cries such as “Oh that I had never been born!”  There were clearly those who thought not living was better than suffering.

 

I’ve been there.  I’ve been in struggle deep and affecting enough that I wished not only for death but that I had never been born to suffer this way at all.  If I had a choice. If we went back in time, and The Divine laid before me life with all that I have suffered, or not living, it would be a very challenging decision.  And if I knew that dying in the womb brought me straight to some afterlife, where living made me suffer first and then brought me to the same end, I would probably skip to the end.  

 

There’s been a ton of joy in my life.  Don’t misunderstand. I’m not discounting that joy.  I’m just saying that the suffering has been far outweighing the joy for most of my existence, and other people don’t get to say that my suffering is better than not being around to suffer–joy or no.  Other people don’t get to define the limits that I can tolerate, or the impact that events have on my person, or the way that I choose to cope with what I have endured and will endure. We don’t get to tell other people that they are better off alive and suffering than they would have been if their parent would have chosen to abort.  We don’t know that. We can’t prove that. We want that to be true, but that doesn’t mean it is.

 

That sounds crass, but it is true.  I can’t say that being born is better.  I can say that I am glad those people are here and that they offer great things just by being alive in this world.  So, it isn’t as crass as you might imagine, in practice as it is in theory.

 

I almost typed that I “would never express that a person is better off dead”.  That would have been a lie.

 

Lol.  Now some people are really stirred up!!

 

But I did say that.  I thought that sometimes when my mom was suffering a lot from her Alzheimer’s and would cry uncontrollably and be confused and frustrated.  It was hard to see her that way, and there were times that I said I wished her disease would progress, because I wanted that suffering to end.  I, obviously, didn’t want my mother to be dead, but I didn’t want her to suffer. I felt that way because of how much I loved my mom. I think a lot of people can relate to that feeling–the love you feel that makes you let go of someone.  

 

Earlier, I said that many would not believe that being pro-choice could be a thing that came out of love.  But it can be when you consider that feeling–the love you feel that makes you let go of someone. And that is the love that lets women let go of the potential of a person.  It isn’t yet a baby in the mind of most–because science. But even if it were a person, and it were a medical necessity to let go, love is still the driving force that makes that decision.  It isn’t selfish. It is selfless, almost always, to choose to end a pregnancy. And often the challenge is that you cannot provide the home that this child will deserve, because you have other children to feed and care for and cannot take on the responsibility of another.  

 

I know, the trope is the irresponsible, young girl who gets knocked up … and like all the tropes, it isn’t true.  

 

I have hundreds of stories and all sorts of scientific facts that I could tell, and they would express my transition from someone who didn’t understand that most abortions are had by women who already have children, and that there is a decidedly racist and classist reason that black women are more affected than others by unplanned pregnancy, and that Planned Parenthood saves far more lives than it has or will ever end (my own included in those saved), and that the decisions of others regarding procreation are not anyone else’s business, to someone who now does understand those things.  I am happy to share statistics and happy to share stories at any time. From the 12-year-old friend whose mom pimped her out for drugs who had 2 kids by age 14, to the friend who suffered trauma from placing her son with an amazing family, to the intrusions of others into my own choices about my body when I had to have a hysterectomy. I have people in my life who have had abortions, who have been placed or placed their children for adoption, who have adopted with relative success or adopted and been faced with a host of problems, and who have faced all sorts of choices and challenges regarding procreation, fertility, birth control, and similar subjects.  But none of that is what I want to take away from this post.

What I want to take away from this post, is the ways that being “pro-life” tends to ignore the “life” portion of that statement once that life has gotten beyond the point of gestation.  Really, many of those who have that purple banner under their name should say, “I AM PRO-GESTATION”. Because once that baby is born, it ceases to have any support or care from most of those same people who proudly shout at innocent mothers and spread propaganda against Planned Parenthood.  

 

I found this out the hard way.

 

So many people were pro-baby Bloem before I had my child as an almost divorced mom.  After I pushed away the baby-grabbing adoption agency and they essentially called me a crazy person for keeping my child, my parents offered their full support.  Many others offered support as well. But my parents were the only ones to keep their promise. The rest were loving and supportive so long as I kept that little one gestating safely, and lots of people were also loving and supportive for a month or so after she was born.  After that?

 

I remember crying as Bill Clinton addressed the country in his State of the Union in 1997 and promised reforms that would make life easier for women like me on welfare.  I didn’t know then that welfare reform would mean lifetime limits and work demands that were impossible in my tiny community, and that would actually make life harder. It would toss millions off of the rolls, and pretend at success, but would actually disappear those families–many of them forced into homelessness, sex work, illegal enterprise, or fraudulent use of programs to survive.  The laws still haven’t been reformed from Clinton’s crap reform, so the number of people forced to survive off the damaging and difficult circumstances that the late 90’s forced people into has stayed relatively steady, and the welfare rolls don’t increase much with the strict rules still in place. So, while this desperation and struggle continues, there are many who promote their pro-life agenda and also still call for cuts to spending on social programs.  They think too many people get “handouts”. Too many people on food stamps. Too many people on disability. Too many people on welfare.

 

I wonder, how many is too many?  How many is just right? Who is the fucking Goldilocks of social programming who decides what is the correct number of disabled and hungry people, and then how do we make that number equal with the number of people in society that actually NEED these services???  

 

If you won’t vote for MORE social safety net funding, you aren’t pro-life.  Because if you won’t vote for more such funding, you don’t want all people to thrive.  Do you think life is worth living in a state of constant need and hunger and suffering?  Do you think it is great to sell your vagina to buy formula? Great! You do it! Otherwise, vote for equal pay and equal rights and more funding for every program that helps people who are not you.  And if you will not, then do not say you promote life. Say that you promote gestation and birth, but not life, per se.

 

Let’s move beyond that subject to another aspect of thriving–prison!  The most obvious thing to bring up here is the death penalty. If you support killing people who break the law, but not a fetus, I call bullshit.  And you can quote the Old Testament until you are blue in the face, but before you do, let me remind you that I went to not one, but two seminaries.  So, I can not only quote the bible back, but I can explain why the New Testament offers an alternative to the penalty of death and asks you to extend mercy, not judgment.  Does the law allow for death? Yes, in some cases. Should it? Absolutely not, if you claim you are pro-life. You can’t ask for life on one hand and death on the other. If life begins at conception, then once god conceived of you, regardless of your sins against him, you deserve life.  If not, then we can talk. But you can’t have the cake and eat it too, people. Pick one and stick with it.

 

Secondary to this is the treatment of humans in general.  Being beaten, raped, tortured, etc., is NEVER acceptable if you are to claim you want life for all.  What kind of life is that?? Nobody deserves such treatment, and if you aren’t supporting an end to mass incarceration, rights for foreign detainees, and just treatment of prisoners everywhere, then you don’t want life for all, but you want gestation and birth for babies.  Once they are born, and make a mistake, you don’t care who does what to them. And that is NOT the will of any god that I will ever serve. If you are fine with the rape and torture of anyone, anywhere, you should seriously evaluate your heart.

 

Please don’t tell me, “Those people committed crimes!”  So did you. Every last one of you has gossiped, or committed adultery, or lusted, or lied, or, at the very least, driven over the speed limit.  You are all just as depraved as the next, right Calvinists? So, don’t tell me now that you are better than those criminals. You aren’t. They may have sinned differently, or gotten caught, or just been unfairly treated by an unjust system that leans toward punishing black and brown boys, but they certainly are not less human or less good than you at their core.  They are people–every bit your equal. And they deserve equal rights, as such.

 

I can go on and on.  An end to war. Equal pay for women.  Ending sexual violence. Gender justice.  Racial justice. Stopping this incessant whining about immigrants taking something from you when you are extremely fucking privileged and losing nothing to them.  

 

I am Pro-Thrive.  I consider all of these things when I speak, write, read, vote, and live out my days.  I consider the actual LIVES of the poor and marginalized, not just their births. Because what the fuck does it matter if babies are born if you won’t do anything to fight for justice in their lives after that fact?  If they die of hunger, or they have to sell their bodies to pay for necessities like food and housing, or they end up in prison at age 14, or they die by war or suicide or gun violence at a young age, then what was the point in funneling all that money and energy into keeping them gestating until birth??  Was that better?? I don’t think it was good enough!

 

We can do better!!

 

The fact is, I don’t particularly love abortion as an option.  I’d love to see free birth control offered to everyone, so that we can limit abortion.  I’d love to see, science-based, comprehensive sex education courses offered to everyone, so that we can limit abortion.  I’d love to see social programs increase, so that we can limit abortion.

 

But I would never tell a woman what she is or is not allowed to do with her body, because I don’t have that right.  I’m not her. And if there is one thing that being sexually violated teaches you, it is that NOBODY tells you what to do with your body but you.  So, I would rather she get a safe, legal abortion, if that is her choice, than go back to the fucking stone age and endanger the lives of women who do make that choice.  

 

Regardless of my personal preferences, however, the point here is to look at the whole life of a person, and to make whole life a consideration.  If you claim to be a person of faith, and you claim to honor life, but you support war and torture and the death penalty and cuts to medicare and SNAP, something is off-balance.  If you wish to claim that you are for life, you must be for all of it, in all of its forms and for all of its people. If you are not for life for all people, at all ages, in all circumstances, you should come up with another claim.  You are not pro-life. You are not pro-thrive. I’m not sure what you are, but it isn’t very inclusive and it isn’t very much like the Christ of the bible that most of you claim to be following. So, that is a concern that you might want to take to heart and consider for a while.  

 

In the meantime, I’ll be hanging out over here in my progressive corner with The Divine.  I am pro-choice.

 

But I am also PRO-THRIVE!!   And I am very glad I have evolved to that point.  Hallelujah!!

Payday

/ christyterese / 4 Comments

I’m busy printing out proofs to attain a payday loan.  It is a long shot, last resort sort of move on my part.  There aren’t any options left beyond a ridiculous interest rate over 50% and steep penalties should I not meet the strict requirements of repayment of that criminal amount of interest.  It should be a crime for such life crushing loans to exist.  And yet I am working to get one, and desperate to hear them approve me for this loan that I believe to be criminal.

It is nonsense, really.  But it makes all the sense when you live in the margins, where there is never enough, and you are treated with contempt and barely considered human, much less treated with the grace and kindness and compassion that humanity should garner.

These days, I don’t know what “humane” means.  I don’t know that “humanity” exists in the way it once did.  Or, more correctly, I don’t know that it exists in the way that I had imagined.

I was running very late for a doctor appointment the other day and needed to take a Lyft instead of a bus.  My driver, a Somali native, said something along the lines of “selfishness is human nature”.  I wanted to argue that was not true.  I wanted to express the compassion and love that humans were capable of offering one another.  And then I thought better of it, knowing that I was suffering needlessly an economic situation that could be eliminated with just a few dollars from the people who call me “friend”, and knowing that this man, having emigrated from Somalia, knew selfishness and pain and racism and judgment and xenophobia and messed up fucking shit that I, an already despairing woman, cannot even imagine.  Who was I to tell him that humanity has something better to offer??

Instead, I made a statement about perspective and how much we are shaped by what we experience in our lives—hoping to avoid agreement that hurting those whom we can place beneath us so that we might rise is human nature, but also not arguing that we are better than that, because I don’t feel like we are better than that very often of late.

I sit at a desk covered in images of Wonder Woman.  I built it.  I covered it in these images deliberately, because I found it inspiring.  Not only do I sit and work atop a work of art when I am well enough to do work, but I also have a deep sense of justice and love and giving of myself to improve the state of the world, and she embodies that for me, and reminds me that my end goal is a world filled with love and justice.  What I do at this desk should be focused on that goal.  And to a great extent my work is focused on that goal.

But more and more my focus is fear.  There is worry over finances.  There is stress over what I read in the news.  There is the sadness and the horror that comes from seeing the world become more broken, fractured, confused, and afraid as a particular world leader creates xenophobia, insecurity, unrest, racism, and general hatred and chaos.  There is pain and struggle and the fear that the future will become even more difficult than the present.  And that isn’t just my personal fear, but the fear of millions, which is even more heartbreaking, because of my deep empathy.  Wonder Woman and her ideals seem worlds away while I work atop images of her from generations of comics.

I wonder if Donald Trump ever watches super hero films or reads comics.  Do you suppose he sees himself as the hero or the villain?  He certainly doesn’t have the ideals of the hero, so he must be delusional if he identifies as one.

I know that I am not the hero in any story.  I sometimes get painted as one.  Ask my brother-in-law about Christmas Day in Seattle and he will tell you a tale that makes me the hero of the story.  But I am not the hero, because I only did what any human should do—I helped a woman in need.  I felt her pain, I met her in it, and I made certain that she was safe in the hands of professional medical personnel before I left to attend to my own needs.  That is the least that we should be doing for one another.  The absolute least.

There is so much more.

So. Much. More.

Recently, I had dinner with my “brother”, Adam.  We were talking about need and giving and enough and excess.  He talked about aid that he had offered our nephew, and the way that he had added a component of “paying forward” part of the funding that had been offered to him.  Give to another, the way Adam gave unto you.

It sounds a bit biblical, right?

It is a bit biblical.  Because there is a verse in the bible that is pretty much the same.  It is found in the Gospel of John, Chapter 13, verses 34 and 35.  It says, “I give you a new commandment: Love one another.  As I have loved you, so you also should love one another.  This is how all will know that you are my disciples, if you have love for one another.”

I suppose that means if my nephew pays forward a third of his college aid, he is a disciple of my “brother”.  Haha.  There are definitely worse men to be disciples of, so this is probably a good thing.

The point I am working toward here is that the goal that we as humans are meant to be working toward—according to Jesus, and according to Adam, and according to Wonder Woman, and according to the feeling in my gut—is offering love and compassion and physical needs and grace and equality and honesty and kindness and more than enough.  And I don’t know when or where we lost sight of that, or whether we ever truly had that in our sights as a society at large.  But our heroes—the embodiments of the best of us—have always had that in view.  We need to cling to that view.

I should be focused on what I can do to continue living out the ideals of Wonder Woman, not on what I need to desperately print out to prove that I am worthy of a criminal payday loan! No human being should be forced to sell their soul so Speedy Cash out of fear that they won’t live from the 28th to the 1st, and will lose their home, contact with their family and friends, and the ability to obtain sufficient calories to sustain their body. And when some of the people are in this state while others are jumping off of fancy boats in the waves on a weekday morning, we are not loving one another as we have been loved.  We are not giving to one another as Uncle Adam gave to us.  We are being selfish.  And we are letting Somali men believe that this is just the way we are as humans—that this is just who we are and will always be: selfish bastards who trample one another to elevate ourselves.

Are you a selfish bastard who tramples others to elevate yourself?  Is that who you want to be?  Is that what you want to be known for and what you want others to believe defines the human condition?

I cannot abide that.  I cannot tolerate that.  I cannot accept that.

I won’t let humanity be a giant game of “king of the mountain” where the ruthless climber is the winner.  Not if I can do anything to help it.

And I can do something to help it.  You can also do something to help!

We can all stop accepting the idea that selfishness is a part of our DNA and refuse to let humanity be defined by anything but the heroic ideals of love and generosity and compassion and care and grace and good.  We get to define who we are, as individuals, as a society, and as representatives of the human condition.  We decide.

So, decide now.  Are you the kind of person who lets payday loans take the souls of disabled, poor women struggling to make ends meet, or are you the kind of person who changes the narrative and refuses to let this be the way that we treat the people in the margins?  Are you the kind of person who is ready to stand up and work hard to eliminate the margins?

It will be difficult work.  Change always is difficult.  You need to learn, you need to change the voices in your head, you need to assess the things that you believe and challenge the beliefs that you have held for many years.  So much of our bias is unconscious, and it takes a lot of self-reflection to work out what we think, and then to consider the ways that thinking might be incomplete, inconsiderate, or just plain wrong.  But if the choice is between doing hard work or letting down humanity, I choose hard work every single time.

Today, I still need the payday loan.  And it breaks my heart to know that I need to sacrifice in this way.  It is a terrible choice.  But there aren’t good choices in the margins very often, unfortunately.  Maybe at some point I will have better options, or there won’t be margins, and humanity will not be seen as selfish, but as loving and generous and compassionate.  Maybe on that day payday loans won’t exist—they actually will be criminal, as in illegal—and disabled women will not be afraid of starving or living under bridges because of financial challenges.  If enough of us choose care over selfishness, this will be reality.

So, choose heroic ideals instead of payday loans.  Don’t let Somalian Lyft drivers believe that this is who we are as humans.  Don’t be this as humans.

We can do better.

I know that we can do better.

Follow Jesus, or Wonder Woman, or Adam.  Choose heroism over selfishness and do better.

As I have loved you, so you should love one another.

And the Storm Rages On

/ christyterese / Leave a comment

It isn’t easy for me to be vulnerable.

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

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

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

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

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

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

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

                I’m praying for you guys…

And under that was a meme that said:

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

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

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

“Lots of people” have disabilities and they…

“Lots of people” are divorced and they…

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

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

Bullshit.

I call bullshit.

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

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

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

Gut fucking punched.

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

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

But the storm is another story.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I keep on facing it.

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

But I face it.

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

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

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

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

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

Robert F Kennedy once said:

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

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

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

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

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

 

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

Avoidance

/ christyterese / Leave a comment

I’m supposed to be paying bills.

But there isn’t enough money.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lament shapes the spirit in beautiful ways.

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

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

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

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

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

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

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

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

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

 

Done

/ christyterese / 4 Comments

In therapy on Monday, I said to my therapist, “I’m done!  I’m done.”

And that was immediately followed by the expression, “I don’t even know what that means, because I am not going to kill myself, so I don’t know what I am done with, per se, or what I am quitting, exactly.”

I’m relatively certain that was followed by an “ugh” and a deep sigh … and probably dropping my hands to my sides in a dramatic fashion that symbolized my giving up.

This morning, as I updated my fundraising site, I once again expressed that I can’t go on.  And when I am talking with friends or family about serious topics, it comes up as well—I can’t keep doing this.  I’m done.  I give up.  I can’t.  I can’t even.

I don’t know if other people feel this level of frustration.  I don’t know if it is a “normal” thing to be overwhelmed by life that you do not want to keep going forward with the living.  And, like I mentioned above, that isn’t a suicidal ideation or proclamation.  I don’t want to die.  I just don’t know how to keep on living in this current state.  I don’t want to do this anymore.  I want a different sort of living, I suppose.

Many people want a different sort of living, I suspect.  There are always goals and changes and opportunities that we are reaching toward.  We see an article of clothing, or a car, or a home improvement project, or a new bit of technology, or some other thing that we want and we strive toward it.  Or we admire a person or a way of living that we see outside of our own self and culture, and we seek to emulate the qualities and characteristics of that person or place or way of being.  We want something different—something “better”.  This is true of pretty much all of us, whether we are seeking more, or less—the minimalist or the consumerist lifestyle.  We are working toward something that we currently do not possess.  We are seeking change.

I think that what I feel, however, and what a lot of people in marginalized spaces or situations feel, is a bit different than that sort of desire and that sort of change.  There isn’t just a drive to be different.  There is a desperation.  There is an evolutionary demand for fighting to survive.

I was watching the show Sense8 on Netflix the other night, and there was a line that struck me.  One of the characters said that he realized he was slowly dying of survival.  And that resonated with me so much that it brought me to tears.  Because it is not only my situation, but the situation of millions of people like me.  We are slowly dying of survival.  And I am just coming to realize it, like Mr. Hoy on Sense8.  It is breaking me.

Nothing has broken me so much that I couldn’t get back up and keep fighting.  I have more sequels than Rocky Balboa could ever have.  Even if he keeps training up new, young recruits until his death, I’ve still got him beat in the comeback department.  Over and over and over, I survive what the world throws at me.  But that is the best and the worst thing.  I survive.  I survive.  I survive.  And that isn’t enough.

We aren’t meant to survive.  Not just to survive.  Not only to survive.

We are meant for love and beauty and good.  We are meant for the Arete of the Greek philosophers, so long ago.  We are meant to thrive, to create, to live, to love, to transform.  And surviving doesn’t let you do those things.  Surviving makes you cautious, paranoid, isolated, resourceful, resilient, manipulative, strong, intimidating, disconnected, dissociated, and a great fighter.  And some of those things can be positive qualities—most of them can be positive under the right conditions.  But those of us who are fighting to survive are not living under the right conditions.  We are living under the worst fucking conditions, which is why we are working so hard to survive.  And the skills that we need and master to survive are not skills which help us to thrive, create, love, and transform.  Those skills aren’t the ones that offer us the love and beauty and good.  We survive to death.  We just keep on making it past the obstacle that is most immediately harming us and our life, and then looking to the next obstacle.  There isn’t room for anything but the fight.  We fight, we fight, we fight, we fight, we fight, we fight, we die.

Because fighting obstacles doesn’t change the world.  Creating new systems and eliminating the ones that are harmful and unjust changes the world.  Developing programs that increase wellness and decrease poverty, sickness, and violence changes the world.  But we don’t have the opportunity to create and develop, because we are so busy surviving.  We are so busy fighting that we don’t have the resources left to create and develop.  We don’t have what we need to thrive.

And the people who are not surviving—the people who don’t live in our situation, and don’t feel the weight and lack the resources and don’t fight the obstacles every moment of every day—don’t spend their energies (for the most part) creating and developing the systems that would change the situations of those of us who are marginalized.  Because they aren’t the ones fighting the unfair fights, over and over and over again.

At some point, you stop wanting to fight.  I’ve reached that point this week.

I can’t do it anymore.  I can’t keep fighting battles in a war that I know cannot be won.  The futility of the military action in Vietnam comes to mind when I think about what I feel today.  So many young men were injured, killed, and left with life-long mental illness because of that action.  And nothing was won.  There was no “victory”.  The westside of Chicago is the Vietnam of my age.  The southside of Chicago is the Vietnam of my age.  But the “enemy” isn’t quite as clearly defined here.  The enemy is us, and we are also the one battling.  It is a strange thing.  It is a confusing thing.  And while I don’t understand why we are fighting battles against ourselves in our own cities, and I don’t understand how we, the victims, are blamed for the fight, I do understand that we are fighting to survive this war.

And we are slowly dying of survival.

The thing that is crazy about all of this—well, one thing, because there is so much crazy about this that I cannot even begin to express all of it—is that it doesn’t matter that I am too tired and too frustrated and too raw and too pained to go on.

I need to go on, or I need to die.

And my instinct—my evolutionary imperative, coupled with my very high dose of antidepressant medication—will keep me alive.  I can’t give up, even though I want to.

I can’t choose to be done.  I can’t be done.  I need to fight the next battle.

So, where does that leave me?

Done.  But not done.

Do I work hard to develop hope, just so it can be dashed once more?  Do I adopt a rote series of movements and dissociate from my actions, protecting my heart from more pain, but closing it off from love and good and beauty in the process?  Do I fight hard and believe that this time will be different, only to find another obstacle on the other side, and to break down once more?

I don’t know.

This post doesn’t wrap up in a sweet little bow.  It ends in a sorrow.  It ends in a question.  It ends in a desperation and a struggle that doesn’t seem like it will ever end.

And that sucks.

I don’t know what comes next.  I don’t know how I will respond to the next moment—the next challenge, the next need, the next unpaid bill, the next overdraft, the next pain, the next fatigue that cannot be overcome, the next spike in my heart rate, the next gunfire heard, the next overdose witnessed, the next rejection, the next extension, the next continuance, the next whatever the fuck gets thrown my way.  I only know that I have one option:  to face it, and to fight it, and to hope that I can overcome.

If you don’t know what that feels like, you should seek out someone who does.  Listen to them.  Learn from them. Help them. Try to find ways to develop and create systems that help and do not harm them.  Offer them the chance to thrive, instead of allowing them to slowly die from surviving.

I don’t know the end to my story.  My journey continues.  A new friend told me this morning that “my best version” is coming.  That gave me a tiny glimmer of hope, and reminded me that the end isn’t here until the end is here.  And this day, I believe, is not my end.

So, I am still moving toward my best version.  I hope that version includes creation and beauty and good and wisdom and love.

For now, I fight on.

Next

/ christyterese / Leave a comment

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

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

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

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

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

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

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

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

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

25 days.

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

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

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

The paralegal said I do nothing.

Nothing.

Next I do nothing.

Oh. My. Fucking. God.

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

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

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

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

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

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

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

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

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

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

But they aren’t succeeding in any significant way.

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

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

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

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

I don’t know how to do nothing.

I am terrified of what comes next.

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

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

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

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

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

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

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

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

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

I still don’t know what comes next.

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

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

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

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

The two parts sit together and discover what is next.

The Song that Never Ends

/ christyterese / Leave a comment

I feel like shit.

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

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

So, I feel like shit.

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

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

Environmental allergies.

Dust and mold, for starters.

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

And bronchitis is violent.

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

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

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

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

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

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

I get it.

It is the song that never ends.

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

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

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

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

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

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

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

And I am not going to stop feeling like this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It transforms pain into beauty.

It makes beautiful music.

 

Wide Awake

/ christyterese / Leave a comment

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

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

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

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

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

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

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

Morning is another story.

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

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

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

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

Let me elaborate.

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

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

Here is why:

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

I’m wide awake.

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

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

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

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

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

I’m wide awake.

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

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

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

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

I am wide awake.

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

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

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

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

But there was also light.

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

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

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

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

I’m wide awake.

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

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

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

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

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

There’s more to me than people know.

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

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

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

Bully

/ christyterese / 15 Comments

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

Where did they learn that hatred and violence?

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

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

Where did she learn this hatred and violence?

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

Where did they learn this hatred and violence?

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

Where did they learn this hatred and violence?

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

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

Where did they learn this hatred and violence?

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

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

Where did they learn this hatred and violence?

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

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

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

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

Where did they learn this hatred and violence?

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

Donald Trump is the Tammy of my current situation.

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

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

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

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

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

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

Where did you learn such hatred and violence?

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

Why do you choose to remain the bully?

 

Dances with Dragons

/ christyterese / Leave a comment

It is no secret that I love the HBO hit series Game of Thrones.  George R.R. Martin is genius in so many ways, and the show follows suit.  And for many reasons, I wonder how Martin connects in the ways that he does to the plight of the marginalized in his medieval and magical imagined society.

One of the ways that I identify with the characters in this series has to do with the plight of the woman.  Not one woman in particular, but a great variety of women in a great variety of situations.  Raped, owned, captive, forced to do and be what another bids you to be—all are ways that women in the stories suffer due to their perceived weakness and their lack of agency.  But we don’t stop there.  We go on to tales of power and strength and cunning and a capacity for greatness in the lives of these fictional women.

I sometimes feel like a fictional woman.

That might sound strange.  I’m not bipolar or schizophrenic and manifesting with delusions that I am a character.  I simply bear burdens that I rarely hear about in true tales.  My life is an epic tale already, and I assume that I am still only about half way through my life, barring the development of fatal disease or the collision with a truck that might end it a bit early.

I’ve gone through so many things in my life that it is difficult to believe that they all truly happened.  I wonder how I survived.  I wonder if I have some cosmic draw upon the evils of our society.  I wonder whether the story has a glorious end, or whether the bad things will keep coming indefinitely for the rest of my life.

I sometimes feel like a fictional woman, because I have never met another who can relate to all of the things with which I relate.    I feel like this life is impossible, not plausible, and maybe a bit crazy—this life of struggle after struggle and story after story.

The marginalization, lack of agency, and captivity that the women of Westeros experience feel like real things for me.  There are moments it is too real for me—when I have my hand clamped over my mouth in shock and my stomach feels as though it has dropped out of my body, leaving an empty, sickly cavern in its place.  Being owned, being abused, being captive: these are things that I know intimately.  And most women don’t have that intimacy of knowledge and connection with all of the bad things you might imagine.  Most women have experienced some marginalization or lack of agency, but not with all the forms of marginalization and lack of agency you can imagine wrapped up into one package.

So, who imagined my story?  How did it become this epic tale that recounts the plight of each and every woman who crosses the pages of Martin’s imagination?  When did I become the poster-child for trauma and trial?

I think the answer is staring me in the face.  And I don’t want to name it—I don’t want to name him, because that will make me feel the unwarranted guilt of calling out the wrongs of those who made my story go so “wrong”.  Because somewhere, deep in my psyche, I still feel responsible, and I still feel shame, and I still feel confused, and I still feel like I need to protect those who harmed me.  That is crazy, and more than just a bit so.  That is a lot crazy.

The startling thing here is not my responses to trauma and trials, but that my responses are considered less acceptable than the actions that brought about those responses.  Molesting your family member, or sex without consent, or smacking around a non-compliant partner, or treating a woman like property are all less offensive to many than my psyche and my ways of coping with the traumas of my life thus far.  Even more startling is the fact that my depression and disability, which are directly related to those traumas, are seen as the marks of a dirty, lazy, crazy, messed up, burdensome, whining, free-loading, fuck-up.  My disabled status is more criticized than the ones whose actions caused my disabled status.  I am attacked for having been attacked, and not just being fine with that.  I am attacked for having been wounded and not just putting a Band-Aid on that shit and going ahead with life unaffected.

The ways I relate to the women in the imagination of Martin, and their portrayal by the producers of Game of Thrones, are ways that express the greatest possible struggles in life.  But I also relate to the women becoming something stronger and more powerful and more able with each passing event.  Hard things make strong people.  And I hate sentiments similar to that statement, in some sense.  I don’t believe that the divine offers us challenges to strengthen us or prepare us or make us useful in the lives of others.  I don’t believe that triumph follows trials, necessarily.  I don’t believe that what doesn’t kill us makes us stronger.  There are plenty of things that didn’t kill me that made me broken and weak and wishing that death had been offered instead.  But, I cannot deny that some of my strength was forged in the fire of evil attacks upon my person and my psyche.

I don’t want to say that I am better because I was treated worse than most.  That simply is not true.  I am far worse off because of the poor treatment I was subjected to in the past.  But I have also developed some great skill in coping and in fighting for justice and in being a beacon for those still caught in a cycle of dark, dangerous mistreatment and marginalization.

One doesn’t negate the other.

I’m a fucking mess who learned lessons in being amazing.  They exist in tandem—the broken and the brave.

And you don’t want to process that last statement.  It fights against the dichotomous thinking that we have been programmed toward for centuries.  Either/or thinking is rarely the best line of thought.  Both/and is the way that the world actually offers itself.  I am both broken and brave, at once.

The women of Westeros are broken and brave.  They are overcomers.  They fight to gain their freedom, their justice, their right to be whom they choose and not the ones they are told to be by others.  But the knowledge of trauma and its effects upon its victims lets me know, with certainty, that these women are also irreparably broken.  There are some things that you never forget.  There are some things that never stop having a hold.  And that hold doesn’t need to propel us toward evil and revenge and perpetual suffering.  Sometimes those things that have a hold are the inciting motivation for our desire to find justice and agency and bravery.  But they still have a hold—they still take a toll.

The thing that I need to keep remembering and reinforcing in my own life is that it is alright for those things to have a hold and take a toll.  It is okay to suffer the effects, and it is okay to fight for freedom from those effects.  And those two things can happen simultaneously.  I can allow both the bravery and the brokenness to exist and to be honored and to be experienced and to be felt deeply.

I am allowed to be both/and.

Sometimes my ability to press forward toward a goal of peace and justice and healing is inspirational.  Sometimes my inability to cope and overcome and heal is just as inspiring.  And it is so and should be so because I am both/and.  I am both a woman of strength and a woman who copes with weakness.  I am both a victim and a victor.  I am both broken and brave.

Learning to celebrate the difficult parts of your life and your person is not easy.  I’m certainly not to the point where I do so with consistency.  But I am closer to celebration today than I have been in a long time.

The challenges are difficult for the women of Westeros.  The moments of champion are many for these same women.  One doesn’t negate the other.  One informs the other.

In the same way, my challenges inform who I become and how I live in this world.  The bad things are not negated by the good.  The lessons don’t erase the loss.  The struggle remains real, even when it seems like I am overcoming, because there are those things that hold on—the things I can’t forget. And those things are a part of who I am, not just a part of who I once was.

Allowing yourself to be both/and, and accepting the brave and the broken equally, is not simple in its execution.  It is ridiculously hard.  It is something that I want to do, but that I am constantly told by my society that I should not do.

“Get over it.”.  “Let it go.”  “Just forgive and forget.” “Look at the bright side.” “At least you haven’t experienced [thing that one deems more crappy than your experiences].”  “There are children starving in Africa.”  “Focus on the future.”   All are well-meaning sentiments, and all are telling me to stop being the person that I was shaped and developed into, and to ignore and subordinate the majority of the things I have experienced.  And I think that desire to ignore and subordinate the broken and the bad things is a conditioned response.  I think that our society tells us that value is tied to good things, and those who experience bad things are people of little worth, or of poor character.

That is a terrible, incorrect, and damaging view—that struggles are the result of poor choices by lesser beings.  That is the root of every “ism” that we experience in our society—racism, classism, sexism, ableism, ageism, and more and more.

Instead of feeding the fallacy that my challenges are evidence of my personal failures, I would love to see a society that can live in the both/and.  I would love to feel that my challenges are just as valued as my moments of champion.  I would love to be treated as a whole—a woman who has trauma and trials and triumphs.  I would love to be accepted as I am, without judgments that minimize the effects of my past experience or tell me to cover up wounds for the comfort of others.

The thing is, I cannot cover up those wounds.  I am covered in wounds and scars, and those don’t disappear.  They might heal a bit, or stop openly bleeding, or be less pronounced over time.  But they never disappear altogether.

I have a scar across my lower abdomen from a childhood surgery.  It used to be a big, hip to hip, thick, red scar.  Now it is lower and thinner and just a touch lighter than the skin around it.  It seems to have shrunk quite a bit, as my body grew, I aged, and time passed; but that scar is still present and always will be.  And that is a part of my whole.  That scar is a moment in time etched on my body for life.  That scar is tied to psychological effects and physical limits and family dynamics and the response of my community.  That scar says all sorts of things about who I am and where I have been and where I am traveling now.  Because it says all of those things, it is important.  It is as important as this moment or any moment to come.  It shaped me and created a way of being and a way of reacting and a way of living that I would not have without it.  So, it needs to be honored and held and accepted and loved as an important part of me.

Identifying with women who overcome the worst challenges and become champions is something that most of us can do on some level.  But it takes a lot of deep consideration to understand the ways that the trial and trauma shaped the triumph.  It takes a lot of understanding to see that the victories are often bittersweet, because of the place where the moment happened, the change came, and the suffering informed the future actions that brought us to the victory.  That understanding is so needed.

Accepting my past is imperative to being in my life today.  Honoring my struggle and refusing to hide or ignore what is difficult to cope with is necessary for me to survive, to thrive, and to continue working toward moments of victory.  Being a champion doesn’t mean you are not still the oppressed and challenged and broken woman in some ways.  And acknowledging both the brave and the broken in me is so important.

Because none of us are only our triumphs.  All of us are both/and.  We are all light and dark, commingling in a storied history.  And it is time to begin celebrating that storied history.  It is time to sing and dance and toast to the storied history that includes both trials and triumph.  It is time to see the characters before us—both fictional and not—as both/and.  It is time to honor the whole person, and end the practice of trying to bleach the dark bits in our histories and our hearts.

I am working hard to love all of the parts of my life and myself.  That work is made harder by those who insist that the hard times and bad times and horrors that have been and are being endured should be hidden behind false smiles and kept behind closed doors.  I need for those around me to be willing and able to accept all of me, and to look at the hard times and bad times and horrors without recoiling in shock and disgust.

There is a moment when a character in Game of Thrones, Sansa Stark, is named by her challenges.  Her name—her title—is questioned because she was forced into marriages against her will.  The power and influence she might have is called into question because she is no longer a woman who holds her family name.  She replies by claiming that she is and always has been a Stark.  She did what she needed to do to survive, but that didn’t make her into someone other.  She has changed, but she is also the same.  Her history and her present are both tied into one.  She is twice married, but she is still a Stark in her heart.  She is both/and.

I think that it would serve each of us (and likely the whole of the universe) well to respond to and respect the both/and in the lives and personas and stories around us.  I believe that the acceptance of the light and the dark, the trial and the triumph, the challenge and the champion, allows us to celebrate who we are without the question of worth, value, purity, influence, or power.  Being who we are, wholly and completely and without shame, is only possible if we accept both/and.  I cannot celebrate and dance and play and love and live in the ways I want and hope to while others force me to question whether my value has been reduced as a result of the history I carry with me into today.  None of us can truly accept ourselves or others until we acknowledge that the dark and the light commingling is a part of our humanity, and that, regardless of what we are currently experiencing, we are still valued and loved.

We need to become a society that does not place value on one and not on another.  We need to be able to face what seems like it must be fiction due to the enormity of the challenge, and still smile and offer kindness and show love.  We need to be people who celebrate the whole.  We need to accept that the same character who is sold/married to solidify an alliance is also the Mother of Dragons.  And we need to celebrate her in both of those moments—the terrifying and terrible wedding night, and climbing atop a great beast and flying to the rescue—in a way that does not deny part of the story.  We need to find a way to accept that all have value, in each and every moment.

I identify with these characters, because I am forged in burning flames.  I have a storied past, and those moments shape this moment and the moments to come.  And I am determined to figure out the way to both dance in the darkness and dance with dragons.  They are equal parts of me.  They do not disappear, and they cannot be hidden.  They are parts of a whole, and should be honored as such.

Join me on this journey.  Let us learn to dance in darkness.  Let us dance with dragons.  Let us be both/and.