Yesterday

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

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.

In the Name of Love

I was doing a bit of reading last night, in an attempt to fill insomnia time with something that makes it seem less like insomnia and more like productivity or entertainment.  The book is one I am almost ashamed to be reading, because its pages are covered with philosophies of giving = getting, and those philosophies almost always include a measure of victim-blaming and exclude concepts of systemic or institutional factors and their influence upon one’s current situation.  So, I usually get annoyed with such philosophies quite quickly, and sometimes I even get really angry with these types of books—yelling at no person in particular about the ways that my bed was not made alone, so no, I don’t have to “lie in it” unless those who victimized me have to lie in a bed far worse. (The number of times I have been told that I made my own bed, and should now lie in it makes me shudder.)

What I gave to the universe was NOT equal to what I received.  Innocence and autonomy lost at a young age cannot be blamed on the innocent who do not choose their victimization.  Did I make some unsavory choices in my lifetime?  Absolutely.  But did I make them without any influence of childhood trauma?  No, I did not.

I gave the universe love and empathy and kindness and creativity and beauty.  It gave me a lot of terrible crap in return.

But, I kept reading the book with the really messed up philosophy of giving = getting, because the thing it kept saying I needed to give and receive was love.  And as I read, it occurred to me that at certain points and in particular situations, I have stopped giving love.  The reason I stopped giving it, was likely because I wasn’t seeing a return on my investment, and because I have complex PTSD and suffer from chronic pain and am an addict and have all these reasons that the world became a place that hurts you, and not one that loves in return.  So, my choice to be mistrusting and build walls and shove my earbuds in my ears and blast Kesha instead of listening to my seatmate on the bus is a valid one, considering all the aforementioned reasons.  But, it isn’t getting me what I want.  And, let’s face it, what I want is what every being on the planet wants:  LOVE.

The challenge for someone who has been so deeply wounded that the scars will never heal is to continue to offer love and trust and vulnerability, even after doing so created the conditions for your wounding to happen.  When you offer someone your trust, and they betray it, or when you offer your vulnerable self, and someone takes advantage of that and uses your openness to harm you, it makes it really difficult to keep offering up your heart and mind and body to another—hoping that by some miracle this time is different and that this offering of your heart doesn’t add brokenness upon brokenness.

In some ways, we should never expect victims to trust again.  In many situations, the one who has been wronged should never give pardon and should never offer another the chance to wrong them in a similar manner.  Why should they?

The answer, again, is love.

Love is the reason I give pardon for past offenses.  But, that hasn’t put me, in some automatic fashion, back into a space where I can receive love with ease.  Because I try very hard to protect myself from further injury.  And that protection requires shutting people out and keeping people at a distance and creating walls and not opening up too quickly.

A friend once told me that I was not vulnerable.   And I was shocked by that statement, because I have been candid about my struggles for many years.  I feel like I share readily with people.  And I do share my story, but I do not share myself.  I don’t put my heart where it can be harmed.  My story doesn’t need to tell about the ways I feel vulnerable today.  I can offer a history without opening myself to others.  And that was the distinction that my friend was seeking to make.  He wanted me to understand that I couldn’t be known and loved if I had an alligator-filled moat around my heart.

I’ve improved a bit at letting people into that space.  The drawbridge goes down for my dad, and for my friend Luke, and for my daughter.  But, as time passes and I read books with terrible philosophies that tell me I get what I give, I realize that there is a tiny crumb of truth to the chapter that tells me I am not receiving what I am not giving.  Because I cannot expect love and trust and vulnerability from another if I won’t offer it to them as well.  And maybe one of the challenges to opening up is that I want the other to do it first, but their wounded parts want me to open up first—we do a dance of waiting and hoping and not receiving because neither of us wants to open up a space where a sword strike might land.  We all wait to remove our armor until the other has removed theirs.  And that gets none of us any closer to the love and trust and vulnerability that is required to further the relationship (be that a friendship or a familial tie or a marriage or whatever).

Yesterday, I was talking with my dad and said that my website seemed aptly named when I started posting online.  I really thought that I was learning to be whole.  But now I am realizing that I instead need to accept that I am broken, and that I might continue to break, so I ought to have chosen a website named “accepting that I am broken”.  He and I both, as though it had been practiced, said at once “Maybe, accepting the broken is how you learn to be whole.”  And I believe that may be the crux of the matter.  I need to accept breaking as a part of offering love.  And I need to acknowledge that offering love first is the best and fastest way to connect to others and to receive love in return.

I will get a few jabs from the protections (or even weapons) of others in the process.  I may increase my scars.  But, I will also be in a position to encourage others to let down their defenses if I have already dropped mine.

So, “Vulnerability” goes on the list of things I am working to improve.  And the shameful book of giving love to get more of it will probably be read to completion in a first attempt at finding the vulnerable self hidden deep beneath my strength and intellect and independence and lack of eye contact and background noise-removing earbuds.  I won’t paint a target on my chest.  But I will try to lower my sword, at the very least.  And hopefully, that won’t injure too much, and I can move on to removing one more bit of protection and psychological isolation.

I anticipate that this process will take years.  I’m heavily guarded.  But, it is a step in the right direction, I am sure, so I am committed to heading down that path.

I know that honesty begets honesty.  I know that trust begets trust.  I know that openness begets openness.  I even wrote a paper on such connections in an undergraduate communications course.  But, for some reason (or for many valid and obvious reasons) I stopped believing that love begets love.  It does.  It doesn’t always and instantaneously, but it will eventually bring you love in return.

So, here is a start at being open:   I don’t have enough love in my life.  I’m deeply wounded, in ways I am afraid to express, because many people in my past have shut me out rather than deal with the depth and breadth of my pain.  All the times I have allowed that pain to surface and become evident, people rejected me, avoided me, or insinuated I was some form of “crazy”.  But, I am trying very hard not to let the response of those people be shaped in my mind as the normative response to pain.  I am trying very hard not to let others shame me for expressing my suffering.  I am cutting out of my life the people that are gangrenous and make my wounds deeper and more affecting.  But, to the rest of you, I am going to try to open myself up and let down defenses.

This blog might get uglier before it becomes more beautiful as a result.

No amount of good grammar can make what ails me seem like entertaining prose.  Some of it—much of it—is a horror story.  But, I’m going to start letting it be such, and not sugar-coating struggle in ways that I believed protected me from harm.  I can’t be protected from what was.  But I can look with hope at what is yet to come.  And I refuse to believe that my story is a tragedy.  There will be a happy ending, but before that happy end, I need to find my way to vulnerability, and unceasing love … an epic goal, so maybe my life is an epic tale.  I like that idea.  I think I shall embrace my life as an epic story, with a glorious end yet to be written.  In the end, as with most epic tales, the main character finds love and peace and good, so I will embrace those, and perhaps emulating them will actually bring them nearer.

I hope I haven’t just agreed to the terrible philosophies of giving = getting.  But, I will at least admit to believing that proximity to good brings about more good.  In the moments when all seems lost, there is a good guide, or a good friend to carry you forward, or some good to fight for after a rallying, inspiring speech.  I need to start finding ways to trust in the good.  I need to find ways to start believing in love, once more.  And one way to believe in it, is to give it.

So, here I stand, ready to give more love.  I’ll let you know what I get in return.

 

Into the Wild

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.

Blank Space

 

I spend a lot of my life looking at blank space these days.  The empty bed where my dad slept the last few days when he visited.  The gap left in my rear molar when the rest of it decided to suddenly crunch its way out of my face.  The empty lot where a neighborhood house was recently demolished.  A whole lot of other space that just seems to need filling.

But the space that frustrates me most is the blank whiteness of my screen/page when I write two or three paragraphs and then cannot write more.

I’m not sure why this space is so oppressing and so frustrating, but it is so. Perhaps it is because the page mimics my life.  I’m not sure what comes next, and I look out into this blankness, unable to discern a clear path to the next line, or paragraph, or page, or chapter in my book (both literally and proverbially).  I’m faced with the blank space where once there was a whole list of opportunities not to be missed.

When my dad was visiting last week he talked about how it didn’t make sense for people to wait for “someday” to do the things they dream of, and he keeps encouraging people to have their adventures and follow those dreams now.  This idea wraps around him now, adding regret to his grief.  I know that my parents kept putting away money for someday, and someday didn’t come. Sickness and death came instead.  Returning to the Netherlands, vacationing in warm places, going to the grandkids’ music programs and graduations and possibly even weddings—all these are lost to my mother, and many of them don’t carry the same joy they once did for my father, since they dreamed such dreams together and now if he does adventure, he does so without her at his side.  I trust he will adventure, but it will always be bittersweet.

As Dad was saying all of this about not waiting and seizing the moment, I realized that many of my saved-for-someday moments were already unreachable.  They have already escaped my grasp.

Chronic illness and chronic pain steal so many moments.

I already know I may never be able to afford a house, a trip outside the U.S. (much less leaving the continent), or the travel and adventure I imagined in my youth.  And I also look at the possibility of finding a partner and the possibility of fulfilling work with doubt and concern, where once I wore the rose-colored glass of a healthy woman—sure that all the good things would come in time and I would one day have my dreams come true.

Now I just look forward and see that blank white space.  I don’t dare dream for things that will always be out of reach.  I don’t know what I might be able to accomplish in this day, much less in the rest of my lifetime.  And I don’t see the possibility as much as I see the pain.  The pain is hard to deny.  The loss is difficult to deny also, but the pain…it fills every moment.  Blank space and pain.

In recent weeks I have tried very hard to find the positives in my life, and to seek out ways to add positives.  I joined a gym with a pool.  I worked on my writing course a bit.  I deleted negative voices filled with doubt, judgment, and general toxicity from my sphere (aka, my Facebook page).  I colored mandalas.  I started a new art project.  I rearranged some things in my home to create a small “sanctuary” space where I can meditate and do yoga or stretching with ease.  I did all the good things.

And yesterday, after writing and swimming and leaving my house and getting some sun and having a massage and creating and doing all the good, I couldn’t move.  Don’t misunderstand and think that I did all the good in one great motion, and that I overexerted myself into pain.  That is not the case.  Instead, I did all the things that are good for me, in moderation and over some length of time.  I did all the things that should, according to the experts, be helpful and good.  And I ended up in tears and debating a trip to the emergency department in the night.

And then, in a painkiller plus muscle relaxer plus anti-inflammatory plus alcohol state of acceptance (which allowed me to stop considering the emergency room), I realized that I was being foolish in the sense that I was seeking to win a fight with my illness.  It isn’t uncommon for people to call themselves “warriors” or “fighters” in the sense that they fight their symptoms and their illness.  I think it makes us feel better to believe that we can win.  But my chronic illness can’t be beaten to death without beating me to death, I suppose.  And that doesn’t seem like a good end to my story.

I think that my story should end with good and gratitude and love and joy and peace.  That is what I want to fill that blank space.  I don’t want to fill it with tales of fighting and losing and fighting and losing and fighting and losing and then dying.  I want to fill it with laughter and hugs and a full heart and mind and spirit.  And deep down, I know that means accepting pain and living with it, not fighting against it.  The warrior mentality isn’t one that I can easily rid myself of….Wonder Woman covers my desk and my walls and my coffee mugs.  And some of that warrior is still needed to accomplish life—to get out of bed and to stretch and to swim and to eat greens and to figure out a way to lower the cable bill while still accessing the next season of Game of Thrones on HBO, even when those things feel impossible. But, some of that warring needs to cease.  Fighting to write more or write faster, fighting to open that roasted red pepper jar that my hand isn’t strong enough to twist loose, fighting to hold onto any “American Dream” that still assaults me every time I see a realty advertisement, fighting to find love instead of letting it alight upon my life with beauty and grace—these wars need to end.

The thing about that blank space that we all need to recognize and embrace, is that it is blank.  It isn’t filled with our fears and doubts or our dreams and successes until we put them there.  Too often I let other people write my narrative, or I accept the narrative I think “should” be mine according to the socialization and assimilation that surrounds me.  What would happen if I embraced that white space on today’s page, and I accepted that whatever is written is mine to write?  At the end of the day, I write my own narrative.  My story is mine.  And I don’t need to be the warrior who overcomes her pain to run that marathon she wanted to run 20 years ago.  I can be the lover and the peacemaker and the best-selling author and the philosopher just as easily, and with just as much success and greatness.  Fighting has sort of been glorified for us, in American society (and others), as though the story need be one of overcoming the obstacles and working against all odds in order to be good and inspiring, but I am beginning to see my story more as one of accepting that the mountain in front of us needn’t always be there to be climbed.  It can be there to look at and enjoy, and then we can hop in the car and drive around that mountain.  We don’t need to kill ourselves trying to do what society calls success.  We can rename success.  We can begin to accept or deny challenges, based on what we want to accomplish and love and seek to add to our story.

I won’t be running any marathon.  I will hopefully continue to swim until 10 laps doesn’t hurt me anymore, but I won’t fight to get in all 10 every time I swim.  I can accept 4 laps for today.  And I can accept 4 laps forever and call that success if I recognize at some point that my body will never make 10.  Goals can change.  I don’t need to fight for something that hurts me.  I can just change my expectations and accept my limitations.  I may still buy a house someday.  I may still marry a lovely person and share life with him or her.  I might not.  But that won’t mean that my story is one of failure, because I am beginning to recognize that I write the ending, and if I believe that love and joy are the end goal, then there are a million roads I can take and still be the heroine of my story.  The blank space doesn’t need to frighten and frustrate and oppress, because it doesn’t need to be filled with fighting a losing battle.

I’m going to fill my space with wins.  I’m going to fill my space with choosing acceptance.  I’m going to fill my space with the knowledge that my disease affects me, but doesn’t own me.  I’m going to fill my space with loving others.  I’m going to fill my space with loving myself.  I’m going to fill myself with reorganizing the way I think of success and failure.  I’m going to fill my space with things I enjoy, whenever possible.  I’m going to fill it with beauty and grace and love and peace as often as I can.  I’m going to write my story as an adventure story with a happy ending, no matter that much of society would consider a woman who spends her days in pain and doesn’t overcome that pain a crappy story.  It isn’t theirs to write.  It is mine.

Don’t fear the blank space.  Embrace it.  Fill it and mold it and shape it and create it any way you choose.  It is yours.  And whatever your story may become, I know that I would love to hear it, and to share mine with you.  (I guess this post already begins to share mine with you.)  Let’s write our own narratives and share them with one another and with the world.  Let’s create a space where, no matter the circumstances of your life, your story is validated and appreciated.  Wouldn’t that be the most beautiful of endings?  Wouldn’t that be the best possible use of blank space?