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 Should Be Packing Right Now

The journey to this moment has been long and hard and chaotic and sometimes frightening.  So, now that I am here, I am paralyzed.

This is certainly not the first time that I have fought my way through all sorts of trauma to find myself safe on the other side and stuck.  Just stuck.  It is like my self doesn’t know how to handle “normal” living. Which should not be surprising to anyone who knows me or my story well, because the great majority of my living has been disordered and chaotic and traumatic and totally fucking wrong.  It isn’t a shock to suddenly feel all weird and confused by normalcy and calm.

But it is a problem.

Sometimes you meet people in life whom you believe create drama.  I’m not one of those people, but I do believe that they exist. I understand why people could believe that I am one of those people, however.  Because I share a lot of characteristics with those people, I am sure.

I don’t create drama.  I’m not running around seeking problems and hoping to add them to my list of affairs.  But I do have a life that attracts many dramatic or uncommon or challenging events.

For instance, this past weekend I discovered that my daughter’s father may or may not be the biological child of the man that he and we have believed him to be the son of for many years.  And I found this out from the adult child of that man, whose stories while she was growing up, completely estranged from the “other family” the man had previous to the family he shared with her mother, are the proofs that we have for this new information.  Is he my daughter’s grandfather?  Not according to him.  But that doesn’t change much other than the storytelling gene might be really strong among the men of this particular family.  Or it could change everything, and my daughter, and the father she has never met and does not want to, might have a totally other family they are completely unaware of out there in the world.  And the grandmother she never met—who then is more unfaithful and dishonest a woman than we imagined, which is saying something—is the only one who would know the truth, assuming she is still living (as I mentioned, we don’t exactly keep in touch with her dad’s family).

See.  This creates all sorts of fucking drama.  I don’t want it.  I don’t need it.  It is confusing and chaotic and leads to all sorts of questions that I don’t know whether to answer or leave alone.  And it doesn’t just involve me, but a woman who may or may not be an aunt to my daughter, and a man who may or may not be her grandfather, and a daughter who may or may not want to know the answer to whether or not they are or whether there is an entirely other family out there somewhere.  But then, how do I help her find that identity if we have no way of accessing that information without contact with a family we don’t want to have contact with?

There is an aspect of the life I am now living that creates this complication.  It isn’t necessarily a simple choice to be or not be in the midst of drama.  Sometimes drama comes for you, and you need to figure out if there are any ways to avoid it, or ways to tackle it without becoming completely absorbed by it.

My therapist likes to say, and I am getting good at saying it before she reminds me, that there is “no such thing as normal”.  All of us have some things in life that others cannot relate to exactly.  All of us have some things in life that are relatable to almost everyone.  But there isn’t one way of living life, and there isn’t one way of living it correctly, certainly.

I know, however, that much about my life is uncommon or not very relatable for a majority of the people that I encounter on a day to day basis.

Not many of us can say that we were abused by a relative from a very young age and for an extended period of time, causing us to develop a complex form of PTSD that acts much like the trauma of captivity in terms of brain malformation, and because that disability and that abuse were not discovered or appropriately handled until well into adulthood, repeated traumas of all sorts were added on top of that early trauma, leaving layers and layers of trauma and pain and suffering and alienation and mistrust.  So many layers.  And then, because that trauma was not dealt with appropriately and all those layers were trying so hard to be forced into alignment with “normal” or at least “average” living during the everyday, our bodies took on that trauma and turned it into physical disease.  Or at least that is one theory, and one that I can easily wrap my malformed captivity brain around.  So, in the prime of our lives, as our little birds leave the nest, and we can go out and do anything we want, we are actually left with the option to A) live according to the very strict and challenging rules of the state regarding disability income and expense, letting decisions be made by another in most cases and feeling like we still have no agency all these years after abuses can supposedly no longer reach our bodies, or B) suffer and die.

And all the “normal” people will think that statement is overly dramatic.  But they don’t have the life where the drama attacks you in the calm of a sunny Saturday afternoon when you see a message about a man named Marvin.  They have lives without disordered thinking and layers and layers of trauma.  They have working dominant hands.  They have sisters who answer the fucking phone when they call—for the third time, to wish her happy birthday.  They don’t freeze when things seem good or average or positive.

They call that fucking Wednesday!

Wednesday.

To me it is like hell freezing over.  And, granted, the temperature in Chicago this week could probably freeze hell.  So, maybe that happened.

I don’t generally have the luxury of a normal day with positive normal things happening.  There aren’t many days when some aspect of depression, anxiety, trauma, abuse, addiction, violence, poverty, pain, or some other messy, bad, or unfortunate thing is having an effect on me or the things around me.  And it isn’t that other people don’t also have these struggles.  I know that they do.  I know many people who have similar struggles.  But I know very few people who have ALL of these struggles.  And the compounding effects are significant.

I carry the weight of a hundred traumas—not just three or four.  So, a trauma-free day?  That just doesn’t exist for me.  I cannot imagine it.  And it frightens the hell out of me.

I know that the more I work in therapy, and the more I work to repair or bypass the disordered thought processes that have become normative for me, and the more remedies and treatments I discover, and the more I work to deconstruct what others have crafted and build for myself a self and a life that I love, the more I will have days that are free of these traumas.  At some point, I may even become accustomed to “normal” or “average” days.  (God, I hope not! Lol) But I am not there yet.

So, while I should be rejoicing in the fact that I probably have an apartment, and that all the pieces of the puzzle are fitting together for my move to the northside, where it is safer and I am closer to amenities and friends, I am, instead, writing this.  Because, I have been packing for months through chaos and threats from my landlord, but now that I have the promise of new owners and another lease, I don’t know what to put in a box.  I’m completely stymied by the normalcy of it.

Can I really be getting a decent apartment in a good neighborhood?  Can that be true?  Can I be inside the margin?  Am I allowed that?

Or is the bottom going to fall out and the earth is going to swallow me up, proving that hell hasn’t actually frozen over, but it was just waiting for me to be lulled into a false sense of security before it devoured me?

That question would sound like insanity … except for the fact that the bottom has been dropping out and hell devouring me for the last 35 years.

Yes.  I should be packing right now.  And by later today, or at least tomorrow morning, I likely will be, but for the moment I am processing this news slowly and cautiously—not wanting to get too happy too hastily, just in case.  Not to believe in the good before the good proves itself to be existent.

Yes, people of the Jesus-loving variety, I know what faith is and I need no proof-texting from the book of Hebrews.  I graduated from two seminaries.  But that definition means nothing to the malformed captive brain.  Only proof of the existence of the good works, and the only good guaranteed is that which comes from within, frankly.  I can only control me.

And you can’t control me either, so that is probably a good point to state, just in case that isn’t self-evident.

I don’t make life complicated.  It made itself complicated over time.  And it now doesn’t become easy because I want it to become such.  I don’t create drama.  My life has had lots of events that were traumatic and the traumatic brings along the dramatic.  The trauma doesn’t disappear because I want it to, and the drama doesn’t either.  I need to deal with them, cope with them, work through them.  And that takes time and hard work.

I don’t actually believe that my apartment with fall into hell.  I don’t believe in a literal hell, so that can’t be a thing I believe.  (I wrote a paper on it once for one of the classes in one of the seminaries.  I received high marks.)  But I do believe that the world should be kinder to those of us who have struggled much in our histories as we seek to find stasis in our present.  It isn’t as easy as it looks.

It is easy to believe that walking on flat, solid ground takes no effort if you have never been out at sea.

Stasis isn’t a given in a life that has been largely characterized by turbulence.  And choosing stasis isn’t easy when turbulence feels more natural.  Choosing the unnatural thing continuously until it no longer feels abnormal, or hard, or foreign is a great burden.

Change of any kind is difficult.  But changing patterns in this manner—taking what feels wrong and trying to tell your brain over and over that it is right, despite all sorts of triggering objections, is excruciating.

Packing right now is a devastating choice.  It means hope beyond all telling, and if things go wrong and this apartment doesn’t happen, it means pain that I cannot ever express—not ever … I don’t have the physical capacity to express it and even now, imagining having to express it at some point makes me feel like I must vomit.  That is what this means to me.  That is what choosing stasis means to me.  That is what “doing the normal thing” has invested in it.  I feel like my head might explode and I want to vomit—that is what normalcy is doing to me right now!

I’ll do it.  I’ll get there.  But after almost 5 years of therapy, with 20-some medications, and in the best physical and mental state I have been for some time, this is still an excruciating moment.  So, the next time you cannot understand why your child hasn’t finished their spelling homework, or your neighbor is dating another loser, or your grandpa gets all weird when you mention that son he rarely talks about remember this post.  Remember that sometimes choosing normal is extremely difficult and painful.  No matter how much being and having something—anything— “normal” is what we want.

Be kind to one another.  And for heaven’s sake somebody come over and help me pack these fucking boxes!!   lol

Next

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

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

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

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

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

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

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

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

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

25 days.

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

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

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

The paralegal said I do nothing.

Nothing.

Next I do nothing.

Oh. My. Fucking. God.

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

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

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

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

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

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

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

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

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

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

But they aren’t succeeding in any significant way.

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

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

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

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

I don’t know how to do nothing.

I am terrified of what comes next.

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

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

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

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

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

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

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

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

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

I still don’t know what comes next.

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

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

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

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

The two parts sit together and discover what is next.

The Song that Never Ends

I feel like shit.

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

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

So, I feel like shit.

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

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

Environmental allergies.

Dust and mold, for starters.

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

And bronchitis is violent.

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

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

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

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

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

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

I get it.

It is the song that never ends.

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

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

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

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

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

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

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

And I am not going to stop feeling like this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It transforms pain into beauty.

It makes beautiful music.

 

Sleepwalker

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

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

There are many.

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

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

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

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

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

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

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

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

The nightmares I can make go away.

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

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

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

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

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

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

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

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

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

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

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

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

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

But that little girl fought hard to survive.

And I am going to keep fighting her fight.

Breakthrough

Sometimes I write a whole lot of stuff and then I just file it away, never to be seen again.

Unless I die and someone figures out my laptop password, divulging all of the secrets within the “Current Writing Projects” folder, there are thousands upon thousands of words that will never be read by anyone.  And that assumes that whoever cracks my password bothers to read my work.

I often feel like writing for an audience makes my writing rather shitty.

In my undergraduate studies, I got a less than fabulous grade in my advanced expository writing course, even though many in the class considered me a fabulous writer.  But I didn’t follow the process that my professor so wanted me to adopt.  My first draft was never handed in on time, and my final draft was usually my first draft with more words tacked on the end.  His process, I believe, was not how I wrote well.

Now, that professor and his colleagues and his many protégés would likely argue that I can’t be writing well if I am still handing in rough drafts.   But I made it through two master’s degrees without a second draft.  And I still feel as though writing in ways that aren’t very stream-of-consciousness, throw-words-out-without-thinking, and blurt-whatever-comes-to-mind are ways that are less successful for me.

I may be wrong.

That happens surprisingly often, given those aforementioned multiple degrees.

But even if they are correct, and my writing would be improved by having a more traditional, tested process, I can’t seem to do it.  Or, more accurately, I can’t seem to love it.

My whole life is sort of like this, I think.  The more traditional and tested, the less enjoyment I experience.  I’ve always been the headstrong, impulsive, unbound type.  And the moment that people set expectations and made rules to hold me in, I suffered.  Some would imagine that the impulsiveness and the chaos of anarchy were what hurt me.  But I truly believe it was being caged that broke me, not being capricious or catapulting into life.

I know that some of this stems from the unhealthy personal history of which I sometimes share bits and pieces.  Feeling captive—being captive—made me desperate for freedom.  I needed to run.  I needed to fly.  I needed to be shot out past the orbit of Earth and end up in the sky, preferably somewhere amid Cassiopeia.  I’m not sure why.  The queen has simply been the place I wanted to be since we had a star-gazing event in the rural backyard of my grade 6 teacher.  That constellation beckoned.  The moment I could, I ran, I flew, I threw myself toward the heavens.

But there were always new sets of rules and people who tricked me into believing I wanted to be caged once more.

This weekend, I read a lovely bit of my daughter’s writing.  She wrote about me.  And she wrote about how I became tethered to the ground by my own body and mind—how I lost my confidence.

I spent all that time seeking to be free, and then my own body and mind caged me.  I finally broke out of the orbits of family, partner, religious tradition, patriarchy, and expectations that were not meant for my good but for my compliance, and the thing that pulled me back down was my chronic illness.

I haven’t been myself in a really long time.  Some days I don’t even know who that self is, or how to find her.  The weight of fatigue and pain and mental anguish grounded me in ways that nothing and no one else could.  And that devastates me.

And suddenly, all I want is to run, to fly, to be thrown to the heavens.  But I don’t even know how to begin.

Caged.  Subject.  Tethered.

Some would say that as age sets in we become more “grounded”, and they mean that in this sense where you gain stability and live out your years with calculated and wise decisions.  And when any of us stray from that trope, we are cast into another—the mid-life crisis sufferer.

I’m in that forty-something stage that may or may not be mid-life.  I’m not average, so I cannot expect that my life span will hit the average either, frankly.  And some people might think that my recent propensity for bright-colored hair or new tattoos or parties with my daughter and her friends or casually dating a string of inadequate suitors are symptoms of this mid-life crisis.  But those people would be wrong.

My desire to find myself again, and gain my strength, and live unfettered and free, and restore my confidence, and be the kind of woman I love to be is leading me down the road I am travelling.  And that is not a crisis.

That is a breakthrough.

That is me learning to own the parts of me that existed before and between cages.  That is me learning that the Christy who fought to be free is the Christy that is naturally occurring.  That is me learning to fly once more.

I may not be good at careful and calculated.  I may not be good at decorum and expectation.  But I am good.  And I am best when I am set free—allowed to embrace my own way, and to chase my dreams without the weight of expectations, rules, secrets, tethers, and ties.

I think that this journey began with me crawling from a pit of despair, and I have a long way to go before I can spread my wings, but I am on that journey.  My feet are on a path, and that path is leading to my best self—no matter what the critics say.

And I am starting to believe that I can one day make it back to the queen in the sky.  Soon I will remember how to fly.

Overdrive

It is weird to want to do all the physically demanding things.  I can’t sit still.  I can’t write an article or finish edits on a piece, because I just need to be up and doing things.

My body will regret this so hard in a few days when the steroids are gone and the drive to do all the things leaves my brain.  But right now, I am getting all the shit done.  All of it.  I’ve cleaned more in the past two days than I have done in the last two years, I think.  I’m out of control.

My brain is in overdrive and I need to keep moving and keep doing.

I know that pain, swelling, and all sorts of suffering will be the result of all this productivity.  But I am taking full advantage of the moment.  I’m letting the steroids fling me into overdrive and get all the shit done.  Because I almost never get the chance at feeling like I have energy, and I always struggle to push through the tasks that need completing.

So, I am flying through the week, chewing on my lower lip, feeling all the drive and letting it force me into action.

My dad said, “But you need to rest.”

I replied, “I’ll rest at Amie’s.”

But that isn’t true.  I’ll crash before that. I won’t keep flying until Christmas.  I’ll crash as soon as the pills are out of my system and my “normal” state of being returns.  And my normal is fatigue and a struggle to accomplish even the simplest of tasks.

For a few days, I get to remember what it was like to have the energy of a regular human being.  And I could be mourning the loss of that feeling.  But, I think that just riding this wave and enjoying the thrill of completing tasks is a better approach.  I’ll break down soon enough, and then I can mourn the loss for a bit.

Today, I am embracing the overdrive.