Accidentally

My dad left only about two hours ago, and already I have realized that I accidentally left my handicapped parking placard in his vehicle.  I suppose this is one accident less than the two from his visit just weeks before, when he accidentally took my spare keys and accidentally left his air mattress and pump.  Regardless, it seems there is always something left or taken without us having meant for it to be so.

 

While he was here I accidentally got him a parking ticket.  I meant to move the car from one street to another, since one is free at night and another is permitted parking only at night.  I was late in my duty and saw the ticket writer moving along the street as I went out to move the car. Too late. The ticket was already written and he wouldn’t take it back and offer a warning instead.

 

A few hours later we were off to lunch in the backseat of the vehicle of my friend and his husband.  It was snowing out, and we were all pleased that the “snow” function on the new Range Rover worked exceptionally and kept us from sliding into the intersection where the road was slick from precipitation.  Unfortunately, the vehicle behind us was not a Range Rover with a snow function to choose, and we were struck from behind. Nobody was hurt, thankfully. (Though I have had a headache since and am inclined to claim that being jostled has thrown my vertebrae off center–but know that my physical therapist can just push those babies back into place next session and likely fix the problem, so I’m not ready to file an injury suit just yet.)  But it took some time to exchange information, and our friends needed to go to the police station after lunch and file reports for the collision, and will need to take the car in for repair.

 

Accidents happen often.  

 

And not just the collision kind, but the kind where you aren’t paying attention to your things or your words or your actions with enough focus to make certain that you aren’t saying or doing something that is potentially harmful.

 

My dad and I also discussed, at length, the type of accident where people’s words are accidentally stupid or hurtful.  Because people don’t seem to pay close enough attention to their surroundings to understand that they are leaving something out.  And generally the thing left out is compassion for a person’s situation–empathy.

 

There are so many statements that have come across our paths that are unintentionally hurtful.  

 

I understand how you feel.  You must be lonely. When are you going to find a new partner?  You should [insert obvious medical advice we have already tried].  Your partner/parent/child is in a better place. You’re young, so you you’ll find someone new.  

 

All of these things are meant to be kind, but they accidentally cause even more wounds.  They aren’t helpful. And what would be helpful is simply to not try to identify or give advice, but to say that you don’t understand, but that you are ready and able to listen, to perform household tasks, and to help in practical ways that give a person time to rest, heal, and grieve in the ways they need to do so.  

 

As a chronically ill individual, I have a whole set of ways that people accidentally offend, atop the normal process of grief and singleness.  I have people who tell me to get well soon–which I won’t. I have the constant onslaught of home remedies and stories of “my [loosely connected acquaintance or distant relative] who did thing X and was healed of their illness, which are unsolicited and annoying, because I have a team of 13 specialists who oversee my care and some raw honey is not going to be the thing that all of them missed as a magic cure.  The other night my cousin said, “If they keep looking around the doctors are going to find things wrong.” Later my dad laughed at me as I recounted that statement and how badly I wanted to reply that medicine doesn’t work that way, and I am not a used car. Things must actually be wrong for them to diagnose me with an illness. They don’t make up illnesses so they can bill you for a new pancreas! It was another accidentally, really weirdly, delivered comment that made me feel like my situation isn’t one that others take seriously or treat with validity and respect.  

 

I am not saying at all that my cousin, or others, don’t take me seriously or treat me as valid and respected.  Quite the contrary! But somehow, when it comes to these statements, their care for me and their understanding of and care for my situation don’t align.  They accidentally get it wrong.

 

So, how do we change that?

 

I wish I had a clearer answer.  Because I can shout empathy, listening, and validation from the rooftops all day long, and people will say, “I’m a great listener and your feelings are totally valid.”  But the disconnect remains. I think there is a big difference between hearing what a person says and feeling what a person says.

 

My dad is of the mind that until you go through grief of this depth, you can’t understand and will continue to view things in a way that is incomplete–and, therefore, will continue to say the wrong things.  

 

I’m not of that mind.  I’m not of that mind because I know people who suffer physical pain and still don’t have empathy for my physical pain.  And I’m not of that mind because I have a few friends who are deeply aware of what I am feeling, even when I am doing what I believe is a good job at hiding my true feelings–they see through my act.  I’m not of that mind because people who have suffered similar experiences to mine can shut down in ways that I cannot, and can ignore the past in ways that I cannot, leaving no room for empathy, even though they know exactly how it feels to experience that pain.  

 

Instead, I think that we all have the capacity for empathy, but very few of us have the strength of will and the courage to open ourselves in that manner.  Because doing so means deliberately seeking to feel the pain of others. It means to share in their sorrows–not just on some surface level where you offer the accidentally insensitive platitudes, but truly feeling that sorrow.  And why in the world would we want to add sorrow to our lives??!!

 

But the thing that is important about sharing in sorrows is that you also get to share in joys.  When you share in the sorrows in deep and meaningful ways, you also share in joys in deep and meaningful ways.  So, letting in the suffering means letting in the celebration. Letting in some darkness means flooding the space with light!  Who would want to miss out on that??!!

 

The people who see me in my darkest moments also are invited to share in my brightest and most glorious moments.  And those are really fabulous! I pour so much love into the people who love me truly that it is almost ridiculous.  I’ve probably loved some people so well that it has frightened them away, because they were not accustomed to such unfettered, unconditional love and it felt awkward or foreign.  But those people also dealt with me in the depths of my despair, which was extremely difficult, I know. And the reward isn’t likely to be equal to the expense, but that is just the way that life works out, I think.  

 

The risk in life is often greater than the reward.  But that does not mean that it isn’t worth it. That doesn’t mean the experiences and the people and the adventures are not worth it.  Because the idea that we shouldn’t move forward unless the reward is greater than the risk is one that was manufactured by the modern man, not one that has always been a part of humanity.  It is an accident of our economy that we weigh the risks and decide that the safe bet is to not open up. We keep closed our bank accounts, our doors, and our hearts because the risk seems to outweigh the reward.  But in doing so, we have made a grave error. Because life happens in the accidents, more often than not. We cannot plan for every outcome. We cannot keep “safe” by keeping distant. And keeping ourselves closed off from everything and everyone just makes us more susceptible to being left alone in our tragedies, should they arrive accidentally.  

 

We need to open up and find that empathy and feel for others and with others.  We need to share sorrows and joys. We need to stop weighing what we think will be the consequences and throw the risk/benefit analysis out the fucking window.  Life isn’t a series of rewards assessments. Life is often a challenge. But it is often an adventure!

 

So go out there and make your accidents be ones that aren’t based on selfish, closed-hearted living that causes offense to those who are suffering.  Make your accidents be the kind that are derived from throwing caution to the wind and running headlong into feelings and actions that let you know the deep lows and the exhilarating highs that life has to offer us as human beings.  Because that is amazing and wonderful, and, I believe, what we were designed to experience.

 

Use that empathy.  Feel deeply. And experience a full life.

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Avoidance

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.

 

When The Pain is All That Is

When I was younger I used to write late at night often.  I was a single mother, trying to raise a child and finish college and figure out life all at once.  The late nights and the early mornings were the times I could write without taking time away from my little girl.  Early mornings were usually reserved for assignment completion, since my brain was fresh and unencumbered by the thoughts of the day to distract me.  But at night, the emotions were what flowed onto the page.

I used to write with ink pen and notebook … I suppose most of us did.  But for me it was an emotional expression that needed the feeling, the movement, the flow.  And you could tell whether I was feeling nostalgic or angry or confused by the way the letters formed and the speed with which they formed and the strength with which I pressed the pen to paper.  I wouldn’t have made it through those years without pouring thoughts on paper.

Now I rarely stay up past ten at night and can’t use a pen or pencil for more than a few minutes at a time, so that pouring out has largely disappeared.

But tonight is a different story.

Tonight I am letting it flow, in lots of ways.

The past few days have been an ongoing assault for me.  Early December reminds me of death, and death reminds me of my mother’s death, and my mother’s death reminds me of all the other deaths, and so it goes with grief.  The more loss you have experienced the more deeply each loss is felt, because they tie themselves to one another in some strange cosmic or cognitive way that none of us fully understands.  But I don’t need to understand it to feel it—deeply.

So, I am in the middle of this grief spurt, of sorts, where feeling anything seems difficult and feeling something means feeling loss and pain.  And of course, that is when I jump on the bandwagon of organizers everywhere and comment about the social problem that plagues my country now: gun control.  (I actually could have chosen from any number of social problems.  I wish that would have been a self-evident choice, but there are too many issues here to not name it specifically.)

And then the judges rule.

And by judges I mean people that are not at all qualified as judges or to make any particular judgments about the issue.  Some of them put out a string of falsehoods.  Some of them accuse me of “name-calling” because I use “stupid/classist/racist” as reasons one might think more guns would be better while simultaneously commenting on the number of shootings in Chicago.  None of them do, or have ever to my knowledge, lived in Chicago, mind you.  I do. In an area where gun violence is a constant. So, I am well aware and educated regarding what may or may not be helpful in ending this violence.  And when I tried to fight back and stand up for my views, I was called a bully and treated like I am being a terrible person, or morally corrupt, or some other form of bad.  Except those things arose after multiple people basically said a whole bunch of stuff about how wrong I am and how dumb my ideas are, and I responded with reasoned arguments and strings of facts.  The idea that I am being mean, or bullying others by stating facts and reasoned arguments is ridiculous. The idea that a bunch of people ganging up on me to say how wrong and dumb and morally bankrupt I am, for expressing factual information about gun violence, seems a lot more like bullying than anything I have EVER done, in my entire existence.

I am, by the way, the opposite of a bully.  I learned how to behave politely in the midst of great struggle and to pretend that my world wasn’t spinning out of control from a young age.  I was the one who was bullied, repeatedly and viciously, by others.  I was crying myself to sleep by age 9 and suicidal by the time I was 18.  I’m not the oppressor, but the oppressed.  I always have been.

I remember a time when my daughter was struggling with asserting herself, and in therapy this was something she was working on.  One day, on the playground, she called a boy a name and told him to leave her alone. That boy had been bullying her for months on end, and she finally stood up to him, and she was sent to the principal and I was called to come get her because she refused to follow a teacher’s instruction to apologize.  When I picked her up, I got angry with the principal, and said she most certainly would not be apologizing, and that we had been working all year to get her to voice her frustration and stand up to this bully.  This was a moment of triumph, not a moment of failure, for a timid girl who always ended up under the sole of someone else’s boot.

She learned that by watching me.

There are things you don’t mean to teach your children.  They are a part of you, so they become a part of them.  I always bent to the will of others.  I always hid the secrets.  I always played the part.  I tried and tried and tried to be the perfect daughter, and I failed.  Because perfection isn’t actually a thing. Nobody is perfect, we say, but then we try to force people to be exactly that, and we strive for exactly that. It makes no sense.  I taught my daughter to play the part too, and to not ruffle too many feathers and to not rock the boat, and I didn’t intend to, but she was subject to the same consequences I had been—being abused and manipulated and taken advantage of by others.

So, here is how I know I am not the bully.  I can’t be that.  I never learned how, and I am still trying to learn how.  Every week in therapy we talk about how I deserve to be happy and I don’t need to care what others think and I don’t have to live up to any expectations and I get to choose whom I wish to be.  Every week.  I don’t know how to be a bully.  But I am learning to voice my opinion and not back down and say things without sugar-coating every single word.  And that is met with all sorts of opposition.

It occurs to me tonight, after enduring days of negative comments about me and my thoughts and my action and my words and my ideas and probably the size of my ass, when you get right down to all the comments I have heard in the past week or so, that maybe those other people—the ones making me out to be the bully–are actually the bullies themselves.  Maybe they are so accustomed to people telling them what they want to hear, and to me being polite and diplomatic, that they lash out the moment that is taken from them.  Or, perhaps the converse is true, and those people are the ones being abused by others, and my insistence on maintaining my views without any pandering or trying to be perfect opens up a view to their own insecurities.  I’ll probably never know (especially because I unfriended most of them on Facebook, and I don’t think they have any other way to contact me).

It doesn’t really matter why they reacted in the way they did.  It doesn’t even matter if how I was speaking made them think I might be a bully.  Because the thing I can see, even in the midst of much pain and loss, is that I am not the kind of person they described, even at my worst.  Anyone who knows me well knows this to be true.  My good friends have watched me in the darkest and worst moments, and they know that I am love to the core, and that frustration only comes with pain, hunger, exhaustion, or injustice.  It doesn’t live in my core, but it assaults me from without.  I have the best of intentions, and the kindness of a saint, and love enough to pass it on to even the most desperate and marginalized among us.  Hugging homeless prostitutes isn’t something that you do when you are a bully, or morally corrupt, or without character.  That depth of love and understanding and that level of acceptance is a rare gift, and I am one of those blessed with that rare gift.  And I don’t need someone else to tell me this.  I know who I am.

Even though pain is all I feel and struggle is all I can seem to find these days, I know who I am.  I am not what those people who haven’t seen me for the last 7 to 20 years believe me to be.

Even when the pain is all I feel, I am still looking inside for my value and my worth, not to the outside.  I am finding the voice within and letting it out.  I am the girl on the playground who is fighting back with her words against an onslaught of injustice and being called to the principal’s office for doing so.  And that is fabulous and amazing and good.  That is a triumph!

I know that few to none of my friends throughout the years struggle from C-PTSD, so I understand that they don’t get how important it is to find value in yourself and to let go of the expectations of another and to stand on your own, even if the other doesn’t appreciate you doing so.  But it is extremely important.  Earth-shatteringly important.

The PTSD mind is a mind divided, and often accompanied by a confusion or a lack of knowing the self.  You can’t always—or maybe ever, in the beginning—trust what you feel to be yours and to be true.  Those core beliefs that you have held for your whole life are false, and it takes so much work to root them out, recognize them, and respond in ways that help to break those down.  To find your worth and to let go of shame and to release anger and to love yourself are nearly impossible.

I’m doing those things.  In the face of all sorts of criticism, I am holding on to me, and letting myself feel what I feel and believe what I believe and stand up for both.

When the pain is all you feel, it is really hard to have breakthrough moments like this, or to find your footing at all.  Today I am stomping with confidence, not just finding my footing.  And if other people felt on the bottom of my boot sole, I suppose that saddens me a bit, but not enough to let up right now.  Because I didn’t actually do any intentional harm to anyone, but others did do intentional harm to me.

Earlier this evening I posted that you cannot offer violence and expect peace in return.  This is how I feel about my whole life, not just the past couple of days of comments.  I was offered year upon year upon year of violence, and it is a wonder and a joy to know that I was not so damaged by that to deliberately harm others, or to deliberately harm myself, or to end my life, or to lose my mind completely.  I was repeatedly offered violence, and ninety-nine of a hundred times, I respond with peace.  That is a lot of peace, under the circumstances.

I am not a bully.  Even when the pain is all that is.

So, I end the night and begin the morning having peace within once more.  The assault of depression might linger for some time, or it might lift in a matter of days or weeks.  Eventually I will find ways to feel joy again.  I know, because I do it time and again.  I always will.  But, I rest in the knowledge that my strength is being found and held and kept against that which would seek to define me against my will.  I am still me, even when me is a pile of grief and loss.  And I will keep on being such, no matter who opposes me.

And it is a triumph.