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

Advertisements

Too Much

Yesterday was too much.

In fact, the too much started the day before, and I didn’t do a good job of mitigating it at the outset.  But who is great at mitigating, really?

On Thursday, when I took the bus to the doctor, there was so much chaos.  There was a woman who insisted her daughter, who looked to be about 10, was 6, so she didn’t need to pay fare for the girl.  And she kept arguing with the driver long after she go to her seat (not having paid, and seemingly having gotten what she wanted).  She would yell some angry assertion about his dumbness and him minding his business, which I am relatively certain he wanted to do, but she kept yelling out offending shit, and it is really hard to mind your business when someone is shouting theirs at you through the bus.

Not long after, a man got on the bus without paying.  We waited several minutes while the driver tried to get the man to leave or pay, to no avail.  So, finally, and with much frustration, the driver went on with the route.  I was running late by this point, and getting internally frustrated by that lateness.  And then the lady with the very-old-looking-probably-not-6-year-old started up again.  She was now angry that the driver let the other man get by without paying.  Even though she had gotten by with not paying fare for the child.  It became a mess of people yelling out random shit about the offenses against them, when the only person who could rightfully be upset, in my opinion, was the driver of the bus.

It got to be too much.  I quickly snagged a seat that let me curl up toward the window and cranked the volume on my headset.  But too late.  Tears started forming, for one reason or another in the corners of my eyes.  Was it fear? Frustration?  Stress?  Anxiety?

Whatever it was, it threatened to pour down my cheeks, which would not have been a great thing and would have added to my emotional upheaval.  So I pushed it back.

There is and has been a place to push things since my childhood.  I know it well.  So many things were too much for my small psyche, and I could not deal—not just would not, but literally was incapable—with that excess.  So, it got pushed into the place.

Obviously, the place isn’t a physical space, as far as we know.  There are multiple synapses that stop firing or misfire or disconnect in the dissociative brain.  It would be much easier if there was one spot that held all the excess. Maybe then we could zap that space into connection, or cut it out altogether, or some other frighteningly macabre way of coping.

As It happens, there isn’t an easy solution, macabre or no.

Once I got off that bus, onto another, and eventually to my appointment, the overwhelmed feeling should have dissipated.  But it didn’t.

That question.  The question.  “When did you first become aware that your speaking was different?”

I was meeting with a vocal specialist.  The troubles with my voice have kept me from living life in the way I would otherwise choose.  I long for my singing voice.   It is definitely time to address the situation.  But, maybe somewhere in the back of my mind, or shoved into the place, there was the fear of this question.

I didn’t notice.  Tony noticed.  Tony mocked me, mimicked me, publicly shamed me.  He told me, in the most hateful and terrible ways, that my voice was different—a strange way of clearing my throat, or making a guttural sound where there ought not be one for an English speaker, or the way that my words have a bit of a sing-song ending at times.  He used that vocal abnormality to hurt me.

And when she asked the question, and I tried to respond, I cried.

The thing is that the place sometimes overflows.  No amount of strength or determination can keep all the too much things from spilling over at times—usually at very inopportune times.  And the place overflowed onto my face and neck in the voice doctor’s exam room.

She was kind.  She was understanding.  And she let me get through that little moment when the place door creeped open a sliver and stuff spilled out, and then she got on with our work.  She showed me the inside of my throat while I was speaking and singing.  She referred me for voice therapy, changed up my meds, and referred me to neurology.  Seeing my throat and my tongue and my voice box in action made the moment when I cried seem miles away.  There are reasons.  They can be addressed.  And that brought all sorts of relief, and shoved Tony’s asinine behaviors back into the place.  Those behaviors might come out in next week’s therapy session, but for now they are not overwhelming anymore.

You might think that is the end of the story.  I faced the overwhelming events and got on with my life, yes?

No.

The feeling didn’t lift.  I watched Netflix.  I worked on crafts.  I took a shower.  I took a nap.  I went for a swim.  I got a haircut.  I took a walk.  I wrote.  I entertained the dog.  I texted with friends.  And through all of the really good coping strategies, the feeling still stuck.  It wouldn’t leave.

And it became more and more pronounced.  It became more anxious, more desperate, more affecting.  Until last night when the place sort of exploded into the forefront of my brain.

Here’s the thing.  The place scares some people, but some people take it in stride.  I’m forced to take it in stride, whether I want to or no.  And I know that the preference for others is to not take it in stride.  There are only a few people in my life who can and will and do stick around when the place shows its face.

Last night, it unleashed itself in full force upon the “bae of the day”.  (I call him that not because he is expendable or will be replaced tomorrow, but because I’m not going to use his actual name here—too early for that.  Plus, it rhymes, and who doesn’t love that?)

I think that I was a bit shocked when all the overwhelming feelings channeled into me having crazy anxiety over what and how and why we were connecting with one another.  I am experienced enough to know that it is best to let things play out in new relationship of any kind, and not to force it.  But the place doesn’t know that as well as I do.  The place might be in my head, but it doesn’t usually communicate with the other areas in the brain, so it doesn’t act with reason.  And this irrational fear that I was misreading all the signs and that I wasn’t important and that I was secretly being played came flying out of the place.  And bae of the day has NOTHING to do with all that shit that escaped the place.  He has in no way acted in a manner that would make the place’s emotional outburst reasonable.  But, again, the place doesn’t act with reason.

But here is the beautiful part of the story.  He met the place with unflinching care, kindness, and understanding.  He engaged the place with honesty and respect.  He accepted the place, and he honored it, and in doing so he accepted and honored me in ways that I don’t even fully understand.  Nobody has ever met the place with as much grace as bae of the day met it.  And because he did, he immediately shut it down.

He shut it down not in a way that made me force my feelings and overwhelmed state back into the place.  He shut it down in a way that let me leave it out.  He shut it down in a way that allowed me to let it be, let it show, and potentially let it go.

And this morning I was thinking about it, as I woke in peace and felt lighter than I have in many days, and I wondered what life might be like if all the people met my place in like manner.  I’ve spent about 35 years managing and monitoring the place.  I’ve been trying to stuff more and more into that place as more and more things turned out bad and wrong and painful.  And I can count on one hand the number of people I trust to meet the place with the grace, kindness, and understanding that is required to process, and to make the place a bit smaller.  But what if there were more than a handful of people who allowed the place and its secrets and its struggles to come out into the light?

That would be earth-shattering.  That would change everything.  That would be a total life-altering experience.  And that would heal so much that is broken.  The place is filled with brokenness.  That is its hallmark.  That is its purpose.  That is its truth.  It is filled with every shard that ever broke away from my heart and my spirit.  It is filled with every hurt I cannot bear.

But when someone else bore the hurt with me, everything changed.  That hurt couldn’t hurt me quite as much anymore.

I’ve learned over a lifetime of keeping the place stocked with secret pain that people don’t like to bear the hurt with me.  I’ve seen the little cracks that open up end relationships, create dangerous situations, and bring shame and judgment upon me.  And I cannot imagine EVER opening the door to let everything out at once.  That might be downright lethal.

But I have more hope today than I did yesterday.  I have more hope that there are people out there like bae of the day.  I have more hope that the place could potentially be emptied bit by bit, shard by shard.  I have more hope that there is healing, and that my whole life doesn’t need to be defined by this PTSD label (though some of it will always be there—my brain scans will attest to that).

And if you are a person who has quit me or threatened me or judged me over the place, I forgive you and I understand that.  I have days like yesterday, when I cannot even cope with what lives inside of that place, so I certainly have no hard feelings toward others who cannot cope with it.

If you are a person who understands this post, and feels the weight of the place in your own spirit, know that there is help out there, and you need not be ashamed or afraid—but you are also totally allowed to feel ashamed or afraid, you are entitled to those feelings.

And if you are a person who has faced the place and stayed in my life, you are fucking amazing.  And I will cling to your responses, continually holding on to the hope that the place might empty, and my heart might heal.  I love you like crazy.

There are these challenges to living with a dissociative disorder.  There are these struggles with managing the rage and the depression and the isolation that such disorders cause.  There are these outcomes of loss and further pain that accompany the misunderstandings about and the actions precipitated by such disorders.  But there are also these people who understand, and who love, and who respect, and who assist, and who offer chances and graces and changes.

I am so grateful for the people who support me in any and all ways.  But I am most grateful for those who let the place be a part of me, and don’t shy away, and let me work my way through it and toward an integrated brain and a more balanced life.  Too much suddenly becomes a tolerable amount when you find those who would bear the weight alongside you.

I’ve found another who will help me bear the weight of the place. I’m grateful I have the opportunity to know him.  I’m grateful for what he carries.

Today is a tolerable amount.

Letting Go

When you have been hurt by people in the past, it can be really hard to trust people in the now.  And it isn’t the fault of whomever you are with now if someone before hurt you, but it is also not easy to keep the two experiences separate in your mind and heart.  As a result, we often try to control things in new relationship and new situations—to keep things safe and metered and carefully mapped.

But things like love and care don’t flourish in an environment where things are safe and metered and carefully mapped.  Passion can’t exist there.  Trust can’t exist there.  So, by trying to prevent hurt from happening we create a place where the happiest and most healing relating is also prevented.

I’m certainly not proposing that we let any and all experience happen to us, without setting boundaries or ensuring our health and safety.  We definitely need to be safe and have boundaries.  But there is only so far we can take those boundaries and that safety before they transform into something else—something more sinister and potentially damaging.  If we are not cognizant of what we are doing with those boundaries and that safety, they can become control.  They can become an inability to let go.

The other night I had a date.  It was an amazing date.  We had an early dinner and drinks, and there was not a moment of dead air between us.  We talked about all sorts of things, and then we dropped my leftover food off at his apartment on our way to a karaoke bar.  We had tons of fun.  We drank, he sang, we made “friends” with a group of Guns and Roses fans on one side of the bar, and a beautiful mother and her daughters celebrating a milestone birthday on the other.  He held the room captive as he sang, and every single person clapped and sang along with him.  He loved being on that stage, and his excitement was contagious.

Eventually we ate again, because we had been out for so many hours and had so many beers.  We took a cab to another bar, and once more he brought everyone into his state of excitement and his love of song.  And I watched him with pride.  Because between songs he was talking to me.

He was more than talking to me.  He was holding every word, and passionately engaged in conversation, and geeking out on my fandoms as hard as I do—maybe harder.  He was wrapping his arm around me.  He was holding me close.  He was kissing my lips.  And I felt honored to have him there doing so.  I felt blessed by his presence, and I felt privileged to be his chosen companion.  I was certain that he could choose lots of other women, but he was choosing me.

And I still refused to let go.

I didn’t sing on stage.  Which makes no sense, because from childhood I have been desiring the stage, and loving every moment I was allowed and able to sing upon it.  And while I am a bit self-conscious about my voice today, with hoarseness and the breaks of a pubescent boy often plaguing my vocal chords without warning.  But that wasn’t why I didn’t sing.  There were plenty of singers worse than I who took the stage.  And I sang loudly from our little table in the corner, with him at my side.  I didn’t go up because I was pretending I didn’t want to.

I wasn’t pretending for him.  I was pretending for me.

I was pretending I had too much humility or shyness or reservation to perform on stage.  I was making excuses for myself and to myself.  Because being up there meant being vulnerable.  Being up there meant I had no control over the outcome.  Being up there meant opening up and letting loose and letting go.  And I wouldn’t do it.

Later that night, back at his apartment, when I took off my shoes and my sweater and my scarf to be more comfortable and cool, the tattoo on my left arm was in full view.  After having hugged and kissed me a bit, he ran a finger over that tattoo, which boldly declares, “Enough”, and he said, “I assume this is about taking your life back.”  Taking my life back is how I described myself on the media platform where we first came into contact with one another.

He had the right of it.  That tattoo is part of fighting back, and saying I have had enough—that I won’t take any of the bullshit I do not want and that I create my experience from now on.

But that tattoo is also about reminding myself that I am “Enough”, just as I am and without any comment or consideration or care of another.  I am not almost good enough.  I am not lacking.  I am not without value or merit or reasons for pride.  I am, wholly and completely, enough.

And in that moment I started to cry.

I wasn’t entirely sure why at the time.  Further thought on the subject, however, brought me to the place I stand this morning.  I know now that I cried because I wasn’t acting like enough.  I wasn’t letting go and letting my true self shine.  I was controlling and metered and safe the whole night.  I was in the presence of another for only a few short hours.  But in those hours, I wanted to be what he admired, instead of being all that I am and waiting to see if he might admire me.  I wanted to create an ending where I don’t get hurt more than I wanted to create something real and deep and true.  And the moment I felt that was what I was doing, I wept.

Crying on the first date is usually a terrible idea, as a general rule.

But even then he was fabulous, and walked through that moment and moved forward with me to the next.  And a bit later I reluctantly left, wanting to remain curled up in his arms, but knowing that my poor dog needed my attention more than I needed the attention of this man.

The next day, thinking it all through once more, I felt ashamed.  I felt foolish.  I felt the familiar weight of having pretended instead of having let go to be myself.  And last night my text went unanswered, and all I could think was that I hoped that my pretending did not take the opportunity to be with this man again from me.  I hoped so much that my refusal to be vulnerable and true didn’t take away the joy of that night and leave me always wishing for another.

I still wait in hope.  And I hope that this realization will offer me a chance to step up next time, and to boldly belt out songs from that stage.

While I do want to see this man again, there is more to it now than a connection with a potential partner.  There are all these layers of decision that we must navigate in every single moment.  And in the moment, I denied the truth and didn’t let go.  In the moment I played safe and controlled and let the hurts of the past define me, and not the heart and the soul and the spirit of the present.  I sought approval, instead of seeking joy.

Sometimes, when people ask me about my history and what I might regret, I shock them with my answers.  They think that my bad marriage or the night of binge drinking where I was sexually assaulted before morning or my drug use or any number of “bad” or “sad” or “regrettable” decisions should be what leaves my lips.  But it is not those things that haunt me.  Because during that time, when all that chaos was happening around me, I still held fast to me.  I didn’t feel like that woman needed to hide in the shadows.  That woman took the stage.  That woman built her own fucking stage if there wasn’t one to take.  That woman was brave and powerful and wild in ways that her later incarnation has not been.  I regret leaving her behind.  I regret not being her on Friday night.  I regret that I forgot that I am enough.

I believe that this man will offer me another chance.  I believe that he is kind and caring and understanding, alongside being fun and courageous and cuddly and cute.

And when that chance comes, I need to swallow any hint of reservation, of safety, of control.  I need to jump up and sing out and let vulnerability rule the day.

I need to trust that I am still, and always, Enough.

I need to let my heart love.  I need to let my spirit fly free.  I need to find and hold joy.

I need to let go.

 

Project

Over the last several weeks I have been embarking on a project to increase my wall art.  I’ve lived in this apartment for five years now, and it is about time that I make the walls my own, instead of just putting a few things on existing nails leftover from someone else’s decorating.

It is a bit strange that there are any leftover nails, since the apartment was rehabbed before I moved in, but either there was a laziness about my apartment’s painters, or the nails that stayed were deeply embedded and left after some effort for removal failed.  But regardless of why they remain, I have used them for my own purposes, and put up a few pictures in the places that had some hardware already installed.

When my daughter and I moved in here, I had recently had surgery and couldn’t lift anything, so friends and family loaded my belongings on one end of the move, and nearby family unloaded those belongings and placed the heavy things in the places to which I pointed on the other end.  And while I am very grateful for the help that I received, once we were alone in the apartment that first evening, it still seemed overwhelming.  Unpacking each box and placing everything where it would come to belong was arduous, and more so because I wasn’t supposed to carry heavy things, and I own too many heavy things.  Even the boxes of bedding become heavy if you pack tightly enough—and I packed tightly enough.

So, turning the bare space into home took a long time.  And filling the spaces where we had left items behind also took time.  I’ve always used moving as an opportunity to purge, and I got rid of a lot of things before the packing even took place.  But over time, I had furniture and shelving and décor to make this house a home.  Except the walls.

I don’t know if it is the habit of moving every year for many years, or my own feelings of not being able to put roots down, or not having the energy to measure and countersink and nail that has kept the walls mostly bare.  I suspect that it has more to do with the feelings, but I can’t always find reasons for what I do with precision.

I do know that I have somehow shifted my thinking, and I want to cover the walls with items and words and pictures that make me feel comfortable and at home.

But, like all the projects around here, this one is about a quarter of the way to completion.

I have the habit of not finishing things.  And it isn’t because I am lazy … though I can claim fatigue and illness keep me from getting things done.  It probably has more to do with boredom.  I start a thing excited about the process of doing and with great expectations for the final product.  But hours or days or months down the road, I don’t find it fun, and I don’t care about it much, and I completely lose interest.

This habit results in all sorts of unfinished projects.  In a corner, there is a bin full of denim and denim strips that is meant to be a braided rug.  On my drafting table lie two unfinished canvases that are meant to be art over my bed.  In another two bins there are piles of fabric that are to be used for quilt making, once I can figure out how it is that I used to sew—clearly it is not a skill that I remember with ease.  There are coasters my mom painted that never got a coat of varnish as her dementia began to affect her art, which are still waiting for that coat of varnish.  I have a ball of yarn still wrapped around knitting needles in a bag, a potential scarf with multiple holes, because I suck at knitting, frankly.  There is a pitch fork setting on the landing where I requested the landlord leave it, so I could plant a row of lavender bushes along the side fence.

I clearly don’t discriminate.  Sewing, paper crafts, photo albums, gardening, and painting all sit unfinished and create disarray in my office/art studio space. I have tried to work out, time and again, why I lose interest in everything and complete almost nothing.  And I have no answer better than “I am an innovator”.

It is true.  I am an innovator.  I have all the ideas and little of the follow-through.  If I could be paid to think of new and interesting ideas, I would never have another financial struggle.  I am extraordinarily gifted in brainstorming, creating, and starting things.  I am really bad at the finishing of those things.

And while I don’t know that innovation is the full reason behind me not completing projects, it does point to some truths about me that should not be ignored.

I lose interest.  I need to be drawn into a thing, and it has to keep revealing itself as new and interesting. And I suspect this applies to all of my life.

The other day I had a second date with someone.  As we talked over our cups of tea, she told me the same story she had told me on date one.  She repeated the same information not just once, but twice, in one date—and the second date.  There should have been new things to talk about on date two!  And, just like that, I was disinterested not only in the repetitive stories, but also in the person telling them.  I wasn’t drawn in.  She didn’t reveal herself in new and interesting ways.  I even wondered if she was dating so many women that she didn’t actually remember to whom she had expressed what stories.  And our own story has likely ended because she told me hers twice.

That might seem harsh to some—especially those who are very accommodating and accustomed to routine.  But it doesn’t seem harsh to me, because that is how I approach all sorts of things.  I need that interest and I need that newness and I need things to change.  The reasons behind that need are vast and complex and numerous, I suspect.   The reasons are also, likely, contradictory—adding to the cognitive dissonance and dichotomy that I am prone to struggle with in life.

I think that I might always want change because I am afraid of stability, and I am afraid of endings, and I am afraid of stasis.  But I am afraid of those things because I want those things.  (Yes, I am aware that makes no sense.)  I would love to end the moving and find security and become a permanent fixture in a space of my own.  But I don’t believe that I am capable of that ending and finding and becoming, based on the events of my past.  I’ve lost faith in the idea that I can be home.

Security was very much lacking in my youth.  And not because I wasn’t offered a loving home or my needs weren’t met, physically.  My parents worked hard to provide for me, and I am ever grateful.  But I also felt captive and wanted to escape my childhood home, my town, my church, my school, and more.  I never felt home and safe and whole in any of those spaces.  I still don’t.  I might never feel home and safe and whole in those spaces.  And because I didn’t feel home and safe and whole, I longed for that.  I looked in all sorts of places for that feeling.  I think a few times I came close to finding that feeling, but something always stepped in the way, and restrained me as I tried to reach out for it.  Every time I thought I had found wholeness and a place to call home, it was torn from me or shattered or inaccessible.  And every time that shattering and tearing happened, I became more convinced that I wasn’t allowed to feel home.  I would never be whole.  I would never stay.

So, I keep moving, and I don’t dare to finish the projects and put the things on the wall.  I fear that the moment I claim this space as my home, it will be taken from me.  And that threat looms larger given my financial stress and disabled status.  I don’t trust that this is home.  I don’t trust that there will ever be one for me.  I’ve lost much of the hope that I can own a home, or feel at home, or ever be whole.  And my projects are like my soul—not complete.

I think there is some comfort to be found, however.  And I think that comfort comes in the starting of every new project.  I believe that the constant beginnings mean that I am still fighting toward the idea that home can happen, and that wholeness can be found, and that art installation isn’t necessarily a death sentence for the walls around me.  I trust that the new projects are proofs of the security and ownership and stasis to come.  I believe that one day my longing will be answered with fullness, and all of these projects can be completed—even the project that is my soul.

It might still take some months or years to complete the rug and the quilts and the art pieces for my walls.  And maybe some of those projects will be crossed off the list and the materials discarded or repurposed at some point.  But many of them will one day be finished and added to my home.

I have created a comfortable space here, in my spacious and sunny Westside apartment.  And even if it isn’t my permanent home, I am determined to claim more and more of it, for the time being.  I have finished some projects—building an amazing desk, creating a peaceful and inviting yoga and meditation space, curating the perfect guest room items to make others feel welcome, putting together the bits and pieces that come in the box of pre-drilled furniture items.  I think I can safely say that I will complete more projects over time.  And I think that I can safely say that I will work through the challenges of wholeness and home that present themselves as I work on completing those projects.

Hopefully, at some point, I can find enough peace and wholeness within myself that I don’t feel the need and longing that creates strife for my spirit, and makes me fear the loss and lack that accompany insecurity.  I still work to keep new ideas of a beautiful future at the forefront of my mind.  I work to keep on creating and brainstorming.  I imagine the home of my dreams.  It isn’t extravagant and it isn’t large.  It is just comfortable, bright, and happy.

And there are lots of finished projects on the walls.

Documented

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.

Lovely

You don’t know how lovely you are…

A lyric from a song I love, and a reminder for every day.

I don’t know how lovely I am.  I’ve not been shown that often.  I’ve been shown all of the dark and terrible things over and over.  And the loveliness that did exist got shoved deep below shame and struggle.

Today I spent myself completely on showing up for a person I love.  And I didn’t need to.  She loves me and I love her, regardless of my attendance at her milestones and events.  But I wanted to, because she is lovely.  And beyond that, she is one of the few in my life who is constantly speaking to me and showing up for me in ways that help me know how lovely I am.  And I needed to give that back.

And then I needed painkillers and a long nap.

But it was worth spending myself in this way.

I think that it is difficult for many of us to spend ourselves on others, and to show up and speak in ways that present to others their best selves.  I’m not completely certain why that difficulty exists, but I am guessing it has something to do with broken trust and ended relationships and hurts and headaches and harm that have come from spending all and receiving nothing in return.  But one of us needs to spend in order for another to do so.

I need to love and trust in order to receive love and be considered trustworthy.

And that is a challenge for me, because of the broken trust and ended relationships and hurts and headaches and harm that have come to me from spending all and receiving nothing in return.  But I am starting to see that none of that history gets to dictate my relating from this point forward, and that the lovely things offered can be received or returned or rejected without my offering being less good or true or beautiful or helpful or kind.  It is the one who cannot receive and return who is struggling and suffering, not the one who offers love and trust.  I know it doesn’t always feel that way, but if you think on it for a moment you will recognize it is true.  Deep down you know that love begets love, and the people who can’t show it or accept it are the ones who are most broken.

So, I am going to encourage myself and all of you to spend yourself, show others how lovely they are, and embrace how lovely you are.  And don’t worry about the outcomes.  Just worry about offering the best and most to the world that you can offer.  See what happens.

Will your heart break?  Will someone mistreat you?  Maybe.  But maybe your heart will heal and be filled, and maybe someone will thank you and love you in return.

It is a chance worth taking.  And it will likely make the whole world more lovely.

 

Cancelled

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.