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.

 

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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.