fibromyalgia

Avoidance

/ christyterese / Leave a comment

I’m supposed to be paying bills.

But there isn’t enough money.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lament shapes the spirit in beautiful ways.

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

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

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

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

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

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

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

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

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

 

I Should Be Packing Right Now

/ christyterese / 1 Comment

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

Done

/ christyterese / 4 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And we are slowly dying of survival.

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

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

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

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

So, where does that leave me?

Done.  But not done.

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

I don’t know.

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

And that sucks.

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

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

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

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

For now, I fight on.

Documented

/ christyterese / Leave a comment

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

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

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

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

Gaaaahhhhh!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bring on the paperwork, world.

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

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

Cancelled

/ christyterese / Leave a comment

I am scheduled for a mammogram later today.  I’ve spent about the last 2 hours debating with myself about whether I do or do not wish to reschedule that appointment.

I can make it.

But I don’t want to worry about it.

But I feel well enough.

No, I don’t feel well.

But I could push through it.

But my head hurts already, and I think I may be getting sick.

But maybe if I just wait a bit I will feel better.

Except I need to hop in the shower and wash off all of the lotions and deodorants and such from yesterday.

I don’t have the energy for that.

Right.  You don’t.

Okay, I will reschedule.

But it takes forever to get in again, and I have surgery coming up in a few weeks, and then I won’t be able to get out and do it.

 

This isn’t an event that has great significance.  I get a mammogram every year, and the past several years of having them done, plus multiple ultrasounds and an MRI, have left my doctors with some confidence that the abnormal mass in my left breast is not cancer.  So, it isn’t like I NEED to be there today.

But I feel like I am always cancelling things.

It is true.  It is really hard to know your boundaries with fibromyalgia.  My body used to tell me in real-time what it needed.  Now it can take hours, days, and even weeks for my body to express that I have overdone it, and that my muscles and joints and brain function are not going to cooperate with my plans for the day, or the week, or the rest of my life.

This disease cancels life.  Not just the annoying little appointments that we all feel like putting off, but the good and beautiful things too.  Time with friends, celebrating with family, going to events … they are all cancelled.

Recently I created a wish list on Amazon of things that I would love to have to make my life easier and to keep me functioning at a higher capacity. Even those needs had to be cancelled, because life throws curve balls and supports I usually depend on were removed, and my financial situation is dire. I’ve had to ask people to support my fundraiser instead and to offer money to pay the bills and keep me alive.

It isn’t really a bad thing to shift focus in that manner.  Obviously, I consider basic needs of tantamount importance, and I am more than grateful for anything and everything that is offered me.

But I feel like even my expectations for living have been cancelled.

And I mean living is the expectation, not that I expected to live with certain comforts.  I am afraid my life might be cancelled.

This is probably difficult for people to grasp.  And I don’t blame anyone for not understanding the depth of my suffering in this moment, or the challenges that I face, or the need that I experience.  I would not have been able to grasp any of that until the last few years happened, and disease became my life, in some sense.

And cancelling became the way I approach life.

I was watching a video of Brene Brown discussing trust the other day. I only got through half of it because I needed to get on the bus and get to yet another appointment (one I couldn’t easily reschedule).  But one of the key components of trust that she talks about in the video is reliability.  She posits that reliability is doing what you say “over and over and over”.

I am not reliable.

I say that I will do a thing, and then the thing is cancelled, or rescheduled, or abandoned because I cannot do it.  My body and my mind won’t let me do it, so it isn’t always my fault, or demonstrative of my personal character, that I cannot follow through on what I say I will do, but the fact remains—I cannot be reliable in the way Brene Brown suggests I must be to be trustworthy.

When I started to exhibit symptoms of fibromyalgia, I had no idea that I was exhibiting symptoms of fibromyalgia.  This is common.  It takes five to seven years on average for people with this disease to be properly diagnosed.  And because of that it is often difficult to even determine onset.  But when I look back several years, and when I talk with my daughter about our history together, I realize that I was already cancelling life as early as 2007.  She would ask to go to the pool, and I would say we can do that tomorrow.  But when tomorrow arrived I would claim that I didn’t feel well, or that I was too tired, and we wouldn’t swim.  She still resents me for cancelling all of those times.  She understands now that I was in the earliest stages of my illness at that time, and that I didn’t mean to be unreliable and to become someone whose word she could not trust, but she remembers the way that she felt let down all of those times, and all the excuses I made for not following through.  And that pains me, just as my physical body pains me—or maybe sometimes more.

I still cancel, and with much more frequency than I did in previous years.  My disease progressed as it went undiagnosed and untreated for those years.  It got worse when I moved to the Midwest from Arizona, and suddenly climate changes, lack of access to healthful organic foods, and less swimming were affecting my body without me being fully cognizant of the effects of these changes.  And by the time people were taking my pain and fatigue seriously, I was on the sofa for a year and a half.

I’ve fought my way back in many ways, and I spend far less time on the sofa at this point.  But the reason that I do much better at living with my illness is that I am better at setting boundaries and better and listening and anticipating my body’s reactions.  Even though it doesn’t tell me in real-time that it is suffering, I can plan more effectively to make certain that I don’t overwhelm myself.  Proactive scheduling, approaching life in terms of my own needs instead of the expectations of others, and being more aware of my illness and the ways it presents and affects me have helped me cancel less … in part because I try to do less.

But I still cancel.  Over and over and over, I cancel.

It is difficult not to apologize for cancelling.  It is difficult to accept it as a symptom of my illness and not as a mark of poor character.  It is hard to feel like I can be a good person, a good friend, a good partner, or a good mother when I cannot commit to things fully and cannot be reliable.

And I wish that there was some positive spin that I could add to the end of this post—some nugget of wisdom that brings us full circle and expresses the self-awareness and growth and determination that I so love to share.

There isn’t.

This is one thing I have not yet figured out.  I still don’t have a beautiful lesson from this experience. If there is a lesson at all, it might be that I am not defined by my symptoms, but that isn’t the way I feel.

Last night I was crying to my dad, as I was telling him about crying to my dear friend Luke the night before, and saying how upsetting it was to look back on my life, and to have knowledge of all the things I have overcome and all the ways I have survived, and to think now that my own body and the illness that plagues it is that which I am unable to overcome, and the thing I may not survive.  I know, in the logical sense, that my body is not killing me, but what I feel is that I won’t survive because of myself.

There isn’t a way to fight against yourself and win.

There may be a way to fight against your disease and win, but that is much easier when you are fighting a cancer, which you kill in order to save yourself, than it is when the thing that you are fighting is incorporated into your entire being.  My own synapses, my own cells, are hurting me.  I don’t have the luxury of separating out what harms me and what IS me.  They are one.

My disease becomes my life.  Hurting is my life.  Confusion is my life.  Cancelling is my life.

There isn’t a way around that fact.  There is only acceptance of that fact.  Or at least that is the way I currently view things.  And I would love to view them differently, but I don’t know how.

I might still go and have my mammogram today.  I might not.  But either way I will continue to struggle with myself over my boundaries and my unreliability and my inability to be as I wish I were—living without constantly thinking about breaking and ruining life.  Living without always considering dying.  Living without worrying that I won’t make it beyond this state, or that this is how it always will be.  Living without cancelling so much of my life.  Living with the constant challenge of seeking to accept life as it is while simultaneously wanting to improve upon my life.

I know it is a constant process, and I know that it will always be such, and I may never arrive at a destination in which I sit and feel like I have completely accepted myself and my way of being in the world.  And I think it is like that for everyone, the healthy and the sick alike.  But today, in this moment, all that seems to matter is that I have, once again, fought with myself over the desire to cancel and not cancel.

I suppose that is how I must approach this fight—moment by moment.  And I suppose that I will eventually start to recognize both the challenge of making it through an event and the cancelling of an event as good and helpful and right.  Because each time I power through, and each time I cancel to rest, I am making a decision to do the best that I can for myself.  And as long as I keep focusing on that—on what is best for my care and for my survival—I am likely choosing well.  Even if my choice makes me appear unreliable.

And, at the end of this post, I have made a decision.  I will reschedule my appointment and deal with the mammogram another day.  Today, my spirit, and my body, and my aching legs and head all need me to rest and to care for myself by cancelling.  Today, cancelling is care.  Today, cancelling is good.  And, at the very least, I can always claim that I am caring for myself over and over and over.

Edits

/ christyterese / Leave a comment

It is a weird process that I am embarking upon this winter.  I have decided to purge.

I am cleaning out closets, slowly but surely, and getting rid of things that are not used or that don’t fit.  I’m looking through my home and my life and my psyche and trying to let go of whatever doesn’t spark joy.  Frankly, if I don’t love it, it needs to go.

And the hardest part of this process is not letting go of those fabulous quilted boots I have been wearing and wearing out for the past three years, but letting go of my expectations for my life.

You see, the closets aren’t the only project.  I have been cleaning my office in little increments for the past month or so, and much of that work has been centered around clearing out boxes of files.  Once upon a time, we used paper to hand in assignments and take notes.  And that time left me with stack upon stack upon stack of paper.

It is more of an annoying task than a strenuous one.  I just need to pick up the file and flip through the pages and determine whether to keep or toss the papers within.  And the criteria of “love it, use it, or lose it” should help me to easily make such determinations.  I obviously haven’t used this paper in years, and I likely won’t use any of it again.

But I love this paper.

I shudder a bit at even making that statement, but it is an expression that I cannot get around.  I don’t love the actual pieces of paper, of course.  I love some of the ideas on the pages.  But that isn’t why I have kept them.  I have kept them because I thought I would use them in my future.  I believed that these articles and notes on theology and philosophy and psychology would be useful when I became a professor, or a writer of groundbreaking new concepts, or a preacher.  And today I am dealing with the fact that my belief was wrong.  I am not and will not be those things.  Those things take energy and capability and cognition that I do not have.  And sans miracle drugs, I never will.

I am not just throwing away notes and articles.  I am throwing away the goal that ten years of education was meant to bring me toward.  I am throwing away the ideas of my future self that have carried me through the last twenty years.  I am throwing away expectations and dreams and hopes and promises made to myself.  I am throwing away a life.

And I know that I have the opportunity to fashion a new life, based on new dreams and hopes.  But I still have this moment to cope with—this mourning the loss of what I loved and this struggle of having to find myself anew.  Everything I fought to achieve seems lost to me, and that is a difficult realization.

I am keeping some files.  I am holding on to some of my favorite and most transforming and best loved articles and papers.  At some point, maybe I will read them once more, or use them for my current writing projects, or offer them to others who are in need of the knowledge they hold.  Because I am not able to, nor do I wish to, erase the past twenty years of my life.  Those were good years in many ways.  And I don’t think they were wasted.  I learned.  I grew.  I developed my thought.  I opened my mind to new information.  I believed in myself.  I accepted my intelligence.  I embraced diversity.  I became more and better than the person I had been before embarking on years of study.

I have all of that growth and development to hold, even while I let go of the goals I had made during that time.  And that is wonderful.

But today, I am feeling a bit melancholy about the ways that I am having to change my view of myself and my accomplishments and my goals for the future.  It is a loss.  A deep loss. (And I often feel like I have had more than my share of loss already in life.)

It isn’t an easy process, this editing of my life and self.  Edits to my writing seem easy in comparison.  Rearranging my sentence structure is so much less work than rearranging a life.

There is one comfort I have in this process, which is the feng shui principle of making room.  New things can’t enter into your closet, or your office, or your life, if there is not space for them to move into.  So, a minimalist environment opens up all sorts of possibility, where an environment stacked and stuffed with things has no room for more.  I am tossing my past and my previous ideas of myself, but I am opening up room for the new future and the new ideas of myself to come.

And they will come—eventually.

My file boxes are already beginning to fill with clippings and found objects that would go great in an art project.  My bookshelves are filling with coloring books and meditations and fiction.  My blank pages are filling with ideas of who I am and what I might wish to pursue.  My closet is filling with clothes that actually fit over my ass.  My spare room is transforming into a yoga studio.  My mind is becoming a place of peace.  My heart is becoming more open to others.

And I suppose that I can find joy in the fact that I am editing a life—that it is being improved and perfected and changed and made new—and not ending a life.  There is more to this story.  There is more to come.

Yesterday

/ christyterese / Leave a comment

Yesterday I did a thing that hasn’t been done in years:  I forgot to put my medication in my bag when I left the house.

Those who are close to me know that I take a ton of pills and I am taking them what seems like all the time.  I have five alarms set for medications, and in the middle of a conversation I will haul out my pill container and some water and take drugs, or I will stop walking and lean against a wall somewhere in the city to haul out my pill container and some water and take drugs, or I will haul out my pill container and attempt to create more saliva and swallow drugs without water because I forgot

…

My medication alarm just went off, so I stopped mid-sentence and went to find my pill container and a beverage and took some drugs.  I think you get the picture.

But yesterday, when the alarm went off on the bus, and I silenced it and opened up the zipper pouch on the front of my backpack to get out my pills, they weren’t there.

“No problem”, I think.  I have an emergency backup container in my bag, just in case I forget my medications.  And I unzip the bag and find the inside pocket where the emergency backup drugs are kept.  They aren’t there.

Moments later I realize that the girl across from me on the bus thinks I am a crazed lunatic, as I frantically zip and unzip and search and search and pull out toothbrush and wallet and keys and pens and all sorts of things while I dig for what must be there.  It has to be there.  I have to have pills!

As I see the look that girl is giving me, I slowly breathe in and out, focusing on the moment, and bring myself back to a state of calm.  I put all the things back in the bag, and I accept the horrifying idea that the meds are not with me, and I alight at the stop where I am meeting my friend for our monthly shopping event. He assists me with one big shopping trip each month, because it is very difficult to access fresh foods near my home, and carrying groceries on the bus is challenging and exhausting.  And when I say assists, I mean I point to things I need and he puts them in the cart for me, pushes the cart through the store for me, keeps track of the costs on the calculator so I don’t go over budget, puts all the groceries on the conveyor belt, loads the groceries into the car, drives me home, and carries all the groceries up the stairs and into the kitchen.  If he were religious he would be a saint.

He was a few minutes behind me in arriving at the store, so I started pushing an empty cart through the housewares section, where I knew there was little I could afford to purchase and wouldn’t likely need assistance.  I was basically browsing until he arrived.  And when he did, I told him, with a frightened look on my face, that I had done the dumbest thing ever, and not brought my pills.  In response he did all the normal shopping things for me, and made me sit while he loaded the car, and refused to let me carry anything heavier than some chips and bread up the stairs, because he knew my pain was increasing with every moment away from those drugs.  Did I mention he is saint-like?  He really is.

And he was right to make me sit and not let me overwhelm my body with the tasks it could not and should not attempt.  And he was right that the pain kept increasing by the minute.  It is the worst and most pain I have endured in a long time.  And since I usually live with pain that is probably about a 6 or 8 of 10 daily, that is saying something significant.

But there is another thing, besides the pain, that was significant.  As the pain increased, so did the knowledge that my pain without medication would always be that severe.  The knowledge that I am feeling ten times less pain with proper medication than I otherwise would experience kept entering my mind.  And then I thought about the difference in my life this year as opposed to last year around the same time.  I am SO much better than I was.  I have much less pain, and I have greater strength and range of motion than I had last year.  I have much stronger doses and more pills than before, which often annoys me, but those pills are staving off debilitating disease and helping me to feel more human and more active and more happy and more balanced than I was a year ago.  The contrast between Christy on drugs and Christy without drugs was so stark that it could not be overlooked.

In that moment, I knew how much worse my life could be—how much worse it was, not long ago.  And I became very thankful for those few hours without medication and the lessons they were teaching.

It is difficult, when your life includes chronic suffering, to keep a positive outlook all of the time. It is lonely, and painful, and depressing, and challenging, and anger inducing, and a great loss, and it just makes all of life seem tainted.  The greyness hangs over your every experience, like fog along the water.  You can walk through it, but it doesn’t lift.  The grey is always surrounding you.

But yesterday, I grasped the difference between the grey and the black—the haze instead of total darkness.  And I became grateful for the grey.

That isn’t meant to sound depressing or sad.  It is meant to express that whatever my situation may be, it could likely always be worse.  And that is a good thing for even those who are not suffering, or for those on the brink of death, to remember.  There is always someone experiencing life less comfortably than we are.  We always have something for which we can be grateful.

The same friend that assists me with my shopping gives me a very hard time about beginning to celebrate and decorate for Christmas long before Thanksgiving Day.  And I often tell him that I practice gratitude each day, so I don’t need a special day for it … and I love the heck out of Christmas, because it just makes me think of all the joy and generosity of the season.  But when I practice that gratitude every day it can become a rote practice of naming off things that are always there, and sometimes the depth of gratitude isn’t reached on all of those days.

Yesterday taught me that depth of gratitude.  It showed me how much better life is, even when it is a very difficult life, than I sometimes acknowledge.  It showed me that some pain is better than all the pain.  It let me see how far I have come, instead of focusing on how far I still have to travel on this journey.

It seems odd that pain would offer me joy.  But in some ways the pain I suffer is a gift—opening my eyes to what I might not see if I were flying through life to get to my job and my meetings and my kid’s soccer game.  Pain offers me opportunity to consider other’s sufferings with a broader perspective.  Pain gives me time to think about and to learn and to ponder what I otherwise might not.  Pain sends me the chance to ask for help and to accept the generosity of others, and to let go of the notions that pushing harder and trying harder and working harder will get you to whatever goals you might seek.  Pain puts me in a space where I cannot be in control, so I need to learn to release and to let be.  Pain heals my spirit in some ways, even while it breaks my body, and makes me angry, and causes me to struggle.

It is interesting that I use grey to describe the way that suffering lingers.  I was taught to think in black and white when I was younger.  There was good and there was bad.  Any sort of concept of middle ground was not introduced until I was much older.  And at times I wish that it were simple to see the difference between the good and the bad and to stick to one side or the other.  But life doesn’t work that way.

I am reminded of a bit of Harry Potter where Sirius tells Harry that we all have some dark and some light in us.  We aren’t just good or just bad, and there aren’t clear categories of black and white.  We are all a sort of mixture of elements, and some things and thoughts and actions about us are less desirable and some are more so, but none of us is completely positive or completely negative.  We are an assemblage of protons, neutrons, and electrons.  We have both positive and negative.  We are meant to be both.  And life is meant to be both.  And mixing white and black gives you grey.

My life is grey.

My choices are grey.  My words are grey.  My intentions are grey.  My feelings are grey.  My actions are grey.

Some of my life is exquisitely perfect, and some of it is as dark as dark can be.  I need to hold and honor and examine and express both dark and light.  We all must, in some sense.  We are all living in the grey.  It is inescapable.

Yesterday, I saw the light in what is dark.  Yesterday I remembered to view things from both the positive and the negative—and sometimes both simultaneously.

Yesterday I embraced the grey.

 

Can’t

/ christyterese / 1 Comment

I can’t write this week.  I’ve tried several times.  Two or three paragraphs in, it falls apart and the message I meant to speak becomes a ball of words with no real significance.  I’m too tangled up inside, I think, to be able to present something linear and coherent on the outside.  I’m a mess.  I’m in a dark and desperate space, and that darkness and desperation are coloring my words.  I never want to speak darkness and desperation.  I want always to speak hope and love and light.

And right now, I can’t.

If you can’t say something nice, don’t say anything at all.  That statement runs through my head.  But it isn’t niceties that concern me, since I often offend others with the ways I communicate.  It is the absence of the hope and love and light that concerns me.  I never want to offer the world my depression and my struggle and my suffering.  I always want to offer the beauty and the good, even in the midst of pain or confusion or whatever the day might bring.  And for the moment, I can’t.

I can’t find the positive in the negative that surrounds me.  And I can’t be the positive in the negative that surrounds me.  And I can’t even want the positive in some moments.  I sometimes get so tired of the invalidation and the inability and the incapacitation present in my life that I want to lie down to sleep and not get up again—ever.

Yes, that sometimes means I am suicidal, but it doesn’t mean that today.  It means that being in this much pain and suffering this much mental anguish and being marginalized in such a way is at times unbearable.  I simply cannot imagine coping with it for one more day.

But tomorrows keep coming, so I keep coping.  Even on the days I feel I can’t go on, I do.

Because I also can’t stop.  Not unless I die.  And a life of suffering still outweighs death, whether that is my choice or my survival instinct or the influence of some outside force, so I keep choosing to live on.  The idea that I can’t stop overpowers the idea that I can’t go on.  So I go on.

I can’t keep this up, but I can’t quit.

Where does that leave me?

Stuck in a place I hate, I suppose.  At least for now.  Maybe tomorrow will be better. Maybe tomorrow will be worse. I don’t know.

I never know.

So I can’t tell you.

Into the Wild

/ christyterese / 1 Comment

I have this problem lately.   I mean, I always have one problem or another it seems, but this problem has become foremost in my mind.  I don’t know who I am or who to be.

That is exactly how I expressed it to my therapist yesterday.

I don’t know who I am or who to be.

It isn’t difficult for me to understand that statement as normal, given my circumstances.  I have PTSD, I am learning to cope with chronic pain, and I am looking constantly at the ways that my core beliefs have been shaped (or misshapen, perhaps) and the ways that my self was formed by others and not by my own desires.  It makes sense that I would feel a bit lost, from a “psychological assessment” perspective.

But I am not a psychologist.  I’m a person without an identity.

And please, no responses that say, “Christy, you are [inserted claim of a personality trait]!”  I don’t need descriptors of how I do or have behaved.  I need to find the core of myself.  I need to find my base—the place from which my actions and traits emanate.  And I need to find it on my own, to make certain it is mine.

I know that we are always influenced and none of us grows up in a vacuum.  I know that what I stand upon and stand for is shaped by all the experiences of my life.  I know that “no man is an island”.  But I also know that growing up disconnecting from myself, and dissociating, and directing energy toward pleasing others rather than feeling my feelings truly, and developing this dichotomous and inauthentic self as a result has left me reeling, and experiencing a strange distance from who I want to be—the person whom I would choose if some of those influences hadn’t been forced upon me.

So, how does one go about finding oneself?

I have no freaking clue.

But that is the journey I’m embarking upon—the finding of the authentic Christy. I hope she is as amazing as I imagine she might be.  I hope when I deconstruct the damaging and false core beliefs, that I appreciate the piece that is left.  I hope that I feel less shattered and broken at the end of this trek into the unknown landscapes of myself.  I hope I don’t get lost in a maze of crazy and never find my way back out.

Wish me luck.  Offer me grace.  Extend kindness and understanding.  Because wherever this road leads, I know that it is going to be bumpy as fuck—and the Christy you thought you knew might not be the one that emerges on the other side.

Hold on.  Here we go.

Into the wild.

The Dread Pirate Booty

/ christyterese / Leave a comment

I’m a little frustrated by all the information out there in the world today concerning the evil of leggings/yoga pants/things that show the curve of a woman’s buttock.  I’m even more frustrated at the way that policing the bodies of women has become so commonplace that others would feel free to do such things as photograph and post (presumably) humiliating pictures of a stranger’s buttocks in nude colored leggings.

Granted, on the pretense of having a slight amount of fashion sense, I have not before worn, nor will I likely ever wear, leggings that resemble my skin tone as a pant.  I just don’t think there should be confusion about whether I am naked or not naked in public.  When I want to be naked in public, you will know without doubt.  So, the nude leggings are not my thing.  But some women choose to wear them out and about, as a pant.

My dictionary’s definition of pants tells me to see “trousers”.  The definition of trousers is: a usually loose-fitting outer garment for the lower part of the body, having individual leg portions that reach typically to the ankle but sometimes to any of various other points from the upper leg down.  So, “usually”, “typically”, “sometimes” and “various other” would express, in my opinion, that having stuff cover some to most of each leg separately is a pant.  We can all note that the recent trend toward the “skinny jean” demonstrates that the loose-fitting designation no longer applies to pants.  So, in effect, leggings are pants as long as you wear them as outer garments.

Whether or not you believe they should be worn as outerwear does not make them pants.  I wear see through/sheer tops rather frequently.  I usually choose to wear an under-layer of a camisole or tank top, but that does not negate the fact that the sheer item is my outerwear. It is being worn on the outside, regardless of whether I put something under it or no.

So, here is a tip for all those who feel the need to police the ways that women (or men, for that matter) choose to cover or not cover their bodies:

STOP DOING IT!!

It isn’t your right or responsibility to shame others for their clothing.  If you find it personally offensive, look away.  Maybe try looking them in the eye and saying a kind hello instead of fixating on the curvature of the buttock?

Women’s butts are not there for you to gawk at, shame, or police in any way.  Women’s butts are there to facilitate things like sitting and walking and squatting and a number of other actions that muscles and tendons and joints in that area support or make possible.  Can we all just look at a butt and see it as a thing people have, because they are useful, and not something to fear or dread or shame or assign some evil or undesirable qualities upon?

In a Facebook comment, I pointed out that I wear leggings with regularity due to a medical condition. One symptom of my syndrome is allodynia, the experience of pain from things that do not normally cause pain.  One thing that causes me pain is the traditionally acceptable buttoned pant.  Waistbands that are not elastic or drawstring can cause me great suffering.  Instead of being supportive or compassionate toward me when I expressed this suffering, I was told it is “fine” for me to wear leggings as long as I cover them with a dress or tunic, to spare children the “indecency” of seeing my butt.

Seriously?!  The issue that is most important here is not letting children be aware of the female buttock, and I receive your permission to minimize my suffering only if I am more aware of your definition of decency than I am of my comfort?  I wonder, would these same people tell a cancer patient that their bald head is fine, as long as they cover it with a wrap or scarf or hat, so their children don’t need be frightened by baldness.  Or, would these people say to a dementia sufferer, it is fine if you lose your brain function, as long as you have the decency to do it in the nursing home where I don’t need to be exposed to you voiding in your Depends and drooling in public?  Is my ass so evil that my own suffering must be subject to your sense of decency?  And maybe you need to seriously assess the development of your sense of decency, if the body of over half of the population of the earth is considered indecent in your definitions.

And, while we are speaking of definitions, “decent” is defined as “conforming with generally accepted standards”.   I find the shaming of the female form indecent.  And I intend to do all that is within my power to change standards, until those which are generally accepted are those that express equality and diversity and autonomy, and not the shaming and oppression of women (or men, or children, or persons not conforming to the gender binary, or anyone else in the universe).

Who’s with me?