Next

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

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

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

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

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

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

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

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

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

25 days.

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

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

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

The paralegal said I do nothing.

Nothing.

Next I do nothing.

Oh. My. Fucking. God.

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

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

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

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

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

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

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

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

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

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

But they aren’t succeeding in any significant way.

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

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

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

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

I don’t know how to do nothing.

I am terrified of what comes next.

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

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

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

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

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

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

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

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

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

I still don’t know what comes next.

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

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

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

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

The two parts sit together and discover what is next.

Wide Awake

I woke to a crash at 5:00 this morning.  My daughter’s cat has finally managed to do what I have been anticipating for some weeks now—she broke some shit.

I investigated the crash and found that the beautiful orchid that was thoughtfully gifted to me after my recent hip surgery was currently lying on the living room floor, surrounded by chunks of clay that now resembled an exhibit in a museum rather than a pot.

Thankfully, the orchid itself was mostly intact.  Though, being a living thing, it has the opportunity, as do all living things, to experience shock, so we shall see if the trauma of being knocked to the ground has a negative effect in the coming days.  (Fingers crossed that it stays beautiful and blooming for a long time.)

I swept up the bits of pottery and a bit of dirt.  I put the orchid into another pot and placed it back onto the television stand where it resides.  And then I tried to return to the warmth and comfort of my bed to sleep again.  But the cat had started a chain reaction.  Because I was awake, the dog assumed it was time to be up and about, so he continually nudged me and licked at my hands until I gave in to his demands and took him outside.  And then, because we had begun the morning routine, he decided he should also have food.

While feeding him, I realized that he was out of water, so I filled that.  Then the idea of water alerted me to the extreme dehydration that was causing my tongue to stick to the roof of my mouth.  I drank two glasses of water and, when that didn’t seem like enough hydration, I downed a Gatorade.  And then, after using the bathroom, I went back to my bed once more.

But sleep would not come.  I was now wide awake.

As is customary, I began to think about all sorts of things while I laid there hoping for sleep.   I have medications that help me sleep at night.  I take the first at 7:00 pm, and take the last at 9:30.  There is a complex system of getting my brain and my body into a sleep state.  Sleep doesn’t come easy for me because of a few illnesses that I cope with, but I have developed a great system over time, and most nights sleep comes with relative ease.

Morning is another story.

Once I had begun the routine of the morning, I couldn’t get back to sleep.  And, while my brain wasn’t as functional as I would have liked—I sent a text to my daughter that said “don’t gorget” when I meant to remind her “Don’t forget to ask about time off for xmas”—I decided that if sleep would not find me, I would simply get up and do things.

The words “wide awake” kept returning to my mind in the semi-dazed moments when I was still struggling to sleep.  And while I can understand the connection in the literal sense—my inability to sleep—there was something beyond that use of the phrase that kept coming into my consciousness.  I couldn’t help but think about what being wide awake means in a more proverbial sense.  I couldn’t help but think of how I became the person that I am today, and how that person is one whom I consider “wide awake”.

People often use the word “enlightened’ as an insult when they respond to what I post on my blog or my Facebook page.  Many seem to take offense when I express my views, and they react by making sarcastic and rude comments.  A fair amount of those comments includes mocking my “enlightened” state.  This past week, I had multiple people slinging verbal attacks at my blog comment section.  And those attacks included that term “enlightened”, used as a pejorative and not a compliment.

But as I laid in bed, and remained wide awake, I had the overwhelming feeling that enlightened is exactly the correct statement to describe me.  I am wide awake.

Let me elaborate.

I have been through transformation after transformation.  And some of those transitions were not easy or came at great personal cost, but life doesn’t easily become other.  We like to stay in our little bubbles of safety and familiarity and commonly held understanding.  We don’t like change.  We certainly don’t like change that takes deep thought, definitive action, and amazing strength.

I never had the luxury of a bubble.  The place that is safe and familiar and commonly held never existed.  And that safety and familiarity will likely never come to fruition.  Mostly because the amygdala doesn’t heal after long-term exposure to abuse, fear, stress, and captivity in developmental stages.  You just keep on being in fight or flight or freeze mode for what seems like eternity, but is actually a lifetime.  Some people might comment here about how devastating and sad and sorrowful that mode is, and how it needs to be fixed.  But they would be wrong.

Here is why:

I’m always afraid, but that fear has made me capable of enlightenment—not in the pejorative sense, but in the literal sense.  I have been given this strange and difficult story to live out.  But because it is strange and difficult, it offers me reflection and recognition that many do not experience.

I’m wide awake.

When you see things in the light which I have seen things, you need to change the way you think.  You cannot come into contact with new ideas and different experiences and come out the other side with the same thinking you had before those things happened.  You cannot see what I see and know what I know and not change the way you participate in life.

I’m an addict.  And many people I know would say that this is a choice—a moral failure on my part.  But those people are not addicts.  Addicts know better.  We know that there is no amount of choice and will power that can keep you clean or sober in an environment where drink and drugs are present.  We know that this is a chemical imbalance in the brain, and a weird reaction in our pleasure center hastily throws us into the rock bottom of substance abuse.  We can manage this disease.  We cannot cure this disease.

I’m a divorced, single parent.  And many people would say that this, also, is a moral failure on my part.  But those people weren’t living in my household, with my abusive partner, and experiencing the terror of never being able to control what happened to me.  Domestic violence survivors know that you cannot go back and start over.  We know that the violence escalates, and it doesn’t reset at the beginning when you reach a terrible end and decide to “try again”.  Instead, you pick up where you left off—in a terrible state and creating greater and greater catalysts for further violence.  Sometimes you just need to leave.  Sometimes your life, and the life of your children, depends on you leaving the violence behind.  But that isn’t easy.  Domestic violence survivors know this.  And those still in abusive relationships know this too.  Because when you have been manipulated and conditioned in ways that leave you isolated and without resources, there isn’t a safe place to go or to be.  It is much harder to start life over with nothing than it is to stay and suffer through the abuse, in many cases. We know this.  We cope with this.  We cannot “fix” this.

I am disabled.  People constantly misunderstand or deny that fact.  “Get well soon”, is an offensive statement.  Because I know what it is to be in pain every hour of every day and night.  I know what it is to have to mourn the life you planned and worked for and ran toward.  I know what it feels like to always be unable and to always feel insufficient and to constantly be in need.  It doesn’t feel good.  And the people who say “get well soon” and who suggest I edit my life or my lifestyle in particular ways do not know that feeling.  They don’t have to mourn the loss and feel the pain.  So, their “solutions” are not only impossible to carry out, but they are reinforcing the idea that I am faulty, not good enough, and not accepted as I am.  I understand this disability in ways that most never will.  (And thank the Divine for that, because I don’t wish this experience on anyone.)  I manage this disability.  I work to be my healthiest self.  I cannot get rid of the disability.  I can’t “change it”.

I am pro-choice.  This is one of the things that makes so many people use the term enlightened in sarcasm and mockery.  This makes so many people think I am a moral failure.  But I live in spaces where choice is essential.  I live in a space of poverty.  I live in a space of fear, of scarcity, of abandonment, and of desperation.  And I should never be forced to bring a child into that space.  I was molested, assaulted, and raped.  I know what it is to not have agency in your life.  I know what it is to not have agency over your own body.  I know what it feels like to be used and owned and threatened and left alone in shock and disillusionment, because other people didn’t listen when I cried out for help.  So, I know what it is to need control over your own body and your own life and your own choices.  Because I cannot let another determine what happens to me.  That cannot happen again.  I cannot have someone else control me—not after all that I have endured.

I’m wide awake.

I understand why people reject my ideas.  I understand that they cannot see from my perspective.  I get why they don’t want to hear and accept and work through the things that I say or write.  It is hard work to change the way you think and behave.  It is hard work for me too.  But I know that I need to keep living my life with eyes wide open, and accepting even the most difficult and dangerous of facts and stories.

I didn’t get where I am today without struggle.  Struggle was often the catalyst for change, because I was shoving myself forward in ways that meant I met many others on my path, and I encountered facts and stories that I couldn’t have encountered if I hadn’t been on that path.  And my path is a rare path.  Not many travel through all the levels of hell that I have walked through.  So many have not had the terrible blessing of a hard life with life-altering experience.  It is awful and wonderful.

There is a quote that I think might be helpful to increase understanding here: “It was the possibility of darkness that made the day seem so bright.” ― Stephen King

For those of you who prefer religious text to horror and suspense novelists, there is also this passage from Ephesians 5: “but everything exposed by the light becomes visible, for everything that becomes visible is light.  Therefore, it says: ‘Awake, O sleeper, and arise from the dead, and Christ will give you light’.”

I am wide awake.

Many people look at the darkness that is expressed in my posts.  They think that these supposed “moral failures” and the challenges that I face are evidences of evil, and of a need for change.  And maybe I got to this place because of darkness, in some sense, but that darkness made the light possible.  I shine out all the brighter because of the dark.  Darkness isn’t necessarily a thing on its own, technically speaking.  It is the absence of light—or of light perceptible by the human eye, at least.   Light shows up, and then we can see clearly, because of the reflective and refractive rays that show up as colors and shapes that we could not discern in the darkness.

Everything that becomes visible is light.  And light is what makes everything visible.  Yes, I know that is circular reasoning.  It is also true.

Here’s the crux of the matter:  I believe that my life is full of light.

I’m wide awake, and the sun is shining down upon me.  It took a while for it to get here, and I watched it rise over the city this morning, but it is now shining down upon me.  And the light shines out all the brighter because of the contrast against the darkness.  Was it devastating and sad and terrible to be harmed in my history?  Yes.  Was it difficult to find my way beyond the pro-life stance that I adopted to fit in with my friends and neighbors and to step into the truth that science and experience offered, becoming pro-choice?  Yes.  Was there much that seemed dark and damaging and defeating in my life? Yes.

But there was also light.

There was love, support, grace, the voice of the Divine, strength, fortitude, passion, and purpose.  There still is.  It just looks a bit different than I had imagined it would.

I’m wide awake, because I let the light of truth transform me, over and over again.  Each time I encounter something that doesn’t make sense, or challenges my current belief system, or shakes me out of dissociative states and requires I be present and thoughtful, or offers a story that has new perspective, I let the light shine upon it.  And that light transforms my ideas, my actions, and my person in many ways.

Last week there were people who called me names in my blog comments, and made all sorts of assumptions about who I am and how I think and what I do.  But today that doesn’t bother me.  Because this morning I was wide awake, and saw clearly (with help from some insights borrowed from a friend) that the upsetting thing about these interactions was not that I am morally bankrupt or doing life wrong, but the upsetting thing is that these people are not letting light shine in darkness.  They are not stepping into truth and letting it transform them.  They are not listening to my story, even though they may be reading my words. And they are not doing so, because it is very hard to do.

Darkness gave me what others lack:  the opportunity to distinguish the dark from the light.  Darkness pushed me toward the path of the light of truth.  Escaping the suffering meant moving toward a new way of thinking and being.  And that way of thinking and being is better than the way of my past.  Truth and light shine in my present and my future.

I’m wide awake.

I understand my situation, and I know my value, and I feel my emotions, and I acknowledge my weakness alongside my strength.  I live in the light, and I seek truth.  If you believe that you can know better, and understand more about my life and my history and my current situation or actions, feel free to make your suggestions, but please do not be angry when I tell you that I don’t need your input right now.  Because I am walking the path of light, shining out in the midst of the darkness, and I don’t necessarily believe that your comments are contributing light.

I know what I am doing.  I know when what I am doing is helpful and when it is not.  I can own the times that it is not helpful.  But I have an awareness regarding my life and my situation that you do not share.

I was recently reading a book from the Song of Ice and Fire or Game of Thrones series.  I was talking with my physical therapist about watching the show versus reading the books, and I told her what I have told others:  I like reading the books, even though I know from the show what is going to happen, because the books offer you internal monologue that the television series cannot portray.

I think that this applies to my life too.  Others can share my experience to a degree, but they are not allowed the privilege of being inside my head, and feeling and knowing and understanding the depth and breadth of who I am and what I believe and why.  You are missing the monologue that shapes the story in important ways.  You are reading from your perspective and not from mine.  And if you do not seek my perspective when you read my words, then you are not practicing the empathy that is required for change and connection.

My perspective is important.  And yours may be too.  But insisting that I do not know my own situation or life experience or whatever else pertains to me, and that you know a better way of being me, simply because you say so (with no facts to back that up whatsoever), is not only uninformed, but it is offensive.  It is offensive because I am an aware, educated, experienced, adult.

There’s more to me than people know.

And I am wide awake—shining light on my life and my surroundings to continually seek truth.

Whatever I am, and whatever I do, I do it wide awake.

And now, I think it is time for a nap. 😉

More Than I Can Handle

 

There is this common statement among those who choose a Christian religious base for their belief system.  I hear it often.  I hate it more every time it is said.

“God won’t give you more than you can handle.”

I call bullshit.

I am dealing with more than I can handle.  I’ve been dealing with more than I can handle since childhood. And every day I wait for the moment when pretending at control is overcome by the chaos of being overwhelmed.

So, here is the thing I need to say:  either the Divine absolutely gives out more than one can handle, or the Divine isn’t a part of the equation at all.

Please do not misunderstand and read that as “God doesn’t exist”, because I won’t challenge anyone on that point.  I believe in divine intervention and live a spiritual, but not religious, life.  The existence of some Divine source is a part of my belief system.  And it does not need to be yours.  If you are not religious, I suppose you could ignore this post altogether.  (But I hope you don’t.)

The statement that the Divine will not let you be overwhelmed, however, is bullshit.  I’m overwhelmed right now.  I was overwhelmed two days ago.  I was overwhelmed last week.  I am consistently given more than I can handle.  And if the Divine exists, and I am overwhelmed, then god does give you more than you can handle.  If the Divine does not exist, then the statement is just bullshit from the very first word.

I’ll try to elaborate without getting into a weird rant or too many details.  When I was a child, I was sexually assaulted repeatedly.  I couldn’t cope with that.  It was too much.  And while my actions were often a cry for help, they went unheard or were misunderstood, so I was marinating in more than I could handle.  I was feeling so much pain and shame and confusion that my brain literally stopped knowing about the sexual molestation.  I had a complete dissociation from the events.  My brain shut those events and any and all memories of those events down.  They were tucked away in a place I didn’t have full access to, and they didn’t become known to me in a conscious way until my first year of college.  And when I became aware of those events once more, it was more than I could handle again.  I became depressed, suicidal, and easily enraged.  I was a mess.  I dropped out of college, moved away, dropped out of another college, harbored a runaway, became a drug addict, and got married.  All of these events were too much to handle.

My husband was violently physically and psychologically abusive.  I got pregnant, got divorced, had my baby, went on a blind date, and started a relationship with a man who influenced my return to drug use and eventually became physically abusive, as my ex-husband had been.

Too much.

And then, it would seem, I “got it together”.  I worked hard, cared for my daughter, went back to college, got a master’s degree or two, and ended up working in Chicago.  While these years seemed like the most excellent years of my life to the onlooking outsider, inside of me there was just as much struggle as there had been in years past.  I smoked a lot.  I ran often.  I did everything asked of me, until I could not do it anymore.  What most don’t know about those years is that my kitchen was a mass of dirty dishes half of the time, I was drinking too much, I was fired as a teacher’s assistant because I didn’t have enough time to read and grade papers. I failed a few classes. My daughter resented me for leaving her with others and not hearing her needs often or well.  I was struggling to keep it together, and looked fabulous on the outside, while the inside was being ripped and torn into ugly, bloodied chunks of flesh.

I had become a master of pretending at a very early age.  It took a lot for me to fall apart in front of people.

But behind closed doors, nightmares and weeping and screaming and praying and begging for the pain to end kept on happening.  They didn’t stop as I grew up and developed and became a “responsible adult”.  They just got pushed under layers and layers of façade.

Around 2010 was when things stop staying hidden.  I couldn’t control it anymore.  Tears would come at the most inopportune time.  The lack of sleep from nightmares and insomnia was causing my body to suffer.  I started experiencing chronic illness, and I started to look and sound like a person without hope—crazed with the desperate state of my psyche and the onset of more and more symptoms of illness.  I was breaking down in front of people, instead of doing it behind closed doors.  And people ran away rather than be sucked into my despair.

It’s hard for people who are not given more than they can handle to watch you crumble under the too much.  They don’t understand it.  And it is frightening.  But what I think is the hardest thing for those people to come to terms with is that the platitude they have believed is not true.  Some of us are given way more than we can handle.

Because some of us are given more than we can handle, we need help.  Help, need, care, and the like are not things that most want to offer, so they cling to the lie and insist that god won’t give me more than I can handle.  But I know that is just an excuse not to get involved in the pain of others.

Empathy hurts.

Walking into the center of another person’s trauma is painful.  Feeling what they feel is terrible, because it is completely and utterly too much.  And nobody wants to feel what I feel.

Nobody wants constant physical and emotional suffering.  Nobody wants to face fears and be struck down and struggle through depression and suicidal thinking and destroy relationships through mistrust and sob with such intensity that you need to sleep for three hours to recover the ability to stand.  And, on one hand, I don’t blame you for not wanting to experience what I experience.  On the other hand, leaving me to suffer alone and offering me platitudes that I know are lies makes me despise you for not standing in solidarity.

Because if you cannot handle what is coming at you every day, and if you are overwhelmed, you need others to help carry the weight.  I have approximately six people who help carry the weight in a consistent and generous and loving way.  One of them I pay, because she is my therapist.

I understand more than anyone how heavy and exhausting and painful carrying the load of my life is, but I don’t have the option to step out from under that weight.  I have to cope, shift, manage, and try not to be crushed forever by that weight.

There is another saying—less religious and more true—that I sometimes use.  “Many hands make light work.”

A heavy burden becomes light when there are twelve people lifting, and not just one. I would love for us to acknowledge our avoidance of the burdens in the lives of those around us.  I would love for us to accept that the only way to make things better is to add our hands and help carry the burdens of others.  I would love for us to admit that there is a lot that is overwhelming, and that it won’t go away because we pretend that god makes life easy enough for us (or hard enough for us, depending on your perspective) in relation to our ability to be weighed down.

You don’t keep placing items in a grocery bag until it breaks.  You open and fill a second bag.  You disperse the weight, balancing things out and making certain that there isn’t too much pressure in one spot.

(Yes, I just unintentionally made a grocery bag analogy to suffering.  But I can’t really think of a better analogy right now, so it stands.)

So, we are given more than we can handle.  Which is why we need others supporting us.  All of us need others to carry a bit of the weight at times.  That looks different at different times and in different spaces.  But none of us is immune to being overwhelmed.

My life has had too much to handle for a really long time.  I get better at handling it through coping strategies.  But I still haven’t worked through all the burdens or had the weight lifted.  I still make valiant attempts at handling it all.  I still pretend I am well while I am carrying immense pain just under the surface.  But I fail all the time.  I hurt all of the time.  I feel too much.  I need too much.  I falter too much.

And my only hope is that others might find their way toward helping, and that hands would be added, and that my burden may become light.  Help me Obi Wan Community, you are my only hope!

I hope that empathy might become something that we embrace, despite the hurts, because it also brings shared joys.  I hope that generosity rules the day.  I hope that we start to dissect the lies that the platitudes reinforce, and come to understand that we need one another to survive.  I hope that we find the strength to share, to respect, to dignify, and to accept.  I hope we leave behind individualism, judgment, marginalizing, and rejecting.

I don’t know that this is an eloquent post.  It is a needed expression.  Mostly, I need to say it, because it is boring a hole through my mind.  But I also hope that it is heard and accepted.  Because I have always known that the Divine isn’t giving me any number of things to handle or not handle.  The Divine gives me an assist when all the things are too much.  The Divine doesn’t give anyone burdens for the fun of watching us struggle.  And the Divine doesn’t give burdens to prepare us for assisting others in their burdens.  The Divine is the opposite of burden.  The Divine is love.  And whatever is burdensome is what we need to fight against, not for.

When racism tears apart a community, we fight against that.  When illness strikes a body, we fight against that.  When fear creates divisions, we fight against that.  When poverty leaves people in the streets, we fight against that.  When little children are violated, we fight against that.  When women are not given a voice, we fight against that.  When gun violence steals lives every day, we fight against that.

And we fight together, in solidarity, and as one entity.  Because there is more in each of those situations than we can handle, and ridding our society of these evils requires our many hands, working together, to unburden the most vulnerable.

I happen to be one of the most vulnerable, because life tossed all sorts of challenges at me, and so my plea for justice—the unburdening of the most vulnerable—ends up being a plea for my welfare also.  I beg for hands to help on a regular basis through my fundraising site.  But I want, today, to express that there are so many more burdens than mine.  And there are so many who do not have hands helping at all, where I have a few.  So, I’m not just advocating for myself.  I’m advocating for all the poor, disabled, homeless, captive, imprisoned, endangered, devastated, depressed, and unsupported victims of all the ills within our society.

Lend them a hand.  Live in solidarity.  Challenge your assumptions and preconceptions.  Dig deep into your heart and your mind, and figure out why you let burdens continue without intervention.  Smash those excuses that keep you from moving toward empathy and solidarity and understanding and care.  Do things that change lives.  Do things that save lives.

And stop saying that god doesn’t give us more than we can handle.  Stop spreading that lie.  Start spreading love.

 

Dances with Dragons

It is no secret that I love the HBO hit series Game of Thrones.  George R.R. Martin is genius in so many ways, and the show follows suit.  And for many reasons, I wonder how Martin connects in the ways that he does to the plight of the marginalized in his medieval and magical imagined society.

One of the ways that I identify with the characters in this series has to do with the plight of the woman.  Not one woman in particular, but a great variety of women in a great variety of situations.  Raped, owned, captive, forced to do and be what another bids you to be—all are ways that women in the stories suffer due to their perceived weakness and their lack of agency.  But we don’t stop there.  We go on to tales of power and strength and cunning and a capacity for greatness in the lives of these fictional women.

I sometimes feel like a fictional woman.

That might sound strange.  I’m not bipolar or schizophrenic and manifesting with delusions that I am a character.  I simply bear burdens that I rarely hear about in true tales.  My life is an epic tale already, and I assume that I am still only about half way through my life, barring the development of fatal disease or the collision with a truck that might end it a bit early.

I’ve gone through so many things in my life that it is difficult to believe that they all truly happened.  I wonder how I survived.  I wonder if I have some cosmic draw upon the evils of our society.  I wonder whether the story has a glorious end, or whether the bad things will keep coming indefinitely for the rest of my life.

I sometimes feel like a fictional woman, because I have never met another who can relate to all of the things with which I relate.    I feel like this life is impossible, not plausible, and maybe a bit crazy—this life of struggle after struggle and story after story.

The marginalization, lack of agency, and captivity that the women of Westeros experience feel like real things for me.  There are moments it is too real for me—when I have my hand clamped over my mouth in shock and my stomach feels as though it has dropped out of my body, leaving an empty, sickly cavern in its place.  Being owned, being abused, being captive: these are things that I know intimately.  And most women don’t have that intimacy of knowledge and connection with all of the bad things you might imagine.  Most women have experienced some marginalization or lack of agency, but not with all the forms of marginalization and lack of agency you can imagine wrapped up into one package.

So, who imagined my story?  How did it become this epic tale that recounts the plight of each and every woman who crosses the pages of Martin’s imagination?  When did I become the poster-child for trauma and trial?

I think the answer is staring me in the face.  And I don’t want to name it—I don’t want to name him, because that will make me feel the unwarranted guilt of calling out the wrongs of those who made my story go so “wrong”.  Because somewhere, deep in my psyche, I still feel responsible, and I still feel shame, and I still feel confused, and I still feel like I need to protect those who harmed me.  That is crazy, and more than just a bit so.  That is a lot crazy.

The startling thing here is not my responses to trauma and trials, but that my responses are considered less acceptable than the actions that brought about those responses.  Molesting your family member, or sex without consent, or smacking around a non-compliant partner, or treating a woman like property are all less offensive to many than my psyche and my ways of coping with the traumas of my life thus far.  Even more startling is the fact that my depression and disability, which are directly related to those traumas, are seen as the marks of a dirty, lazy, crazy, messed up, burdensome, whining, free-loading, fuck-up.  My disabled status is more criticized than the ones whose actions caused my disabled status.  I am attacked for having been attacked, and not just being fine with that.  I am attacked for having been wounded and not just putting a Band-Aid on that shit and going ahead with life unaffected.

The ways I relate to the women in the imagination of Martin, and their portrayal by the producers of Game of Thrones, are ways that express the greatest possible struggles in life.  But I also relate to the women becoming something stronger and more powerful and more able with each passing event.  Hard things make strong people.  And I hate sentiments similar to that statement, in some sense.  I don’t believe that the divine offers us challenges to strengthen us or prepare us or make us useful in the lives of others.  I don’t believe that triumph follows trials, necessarily.  I don’t believe that what doesn’t kill us makes us stronger.  There are plenty of things that didn’t kill me that made me broken and weak and wishing that death had been offered instead.  But, I cannot deny that some of my strength was forged in the fire of evil attacks upon my person and my psyche.

I don’t want to say that I am better because I was treated worse than most.  That simply is not true.  I am far worse off because of the poor treatment I was subjected to in the past.  But I have also developed some great skill in coping and in fighting for justice and in being a beacon for those still caught in a cycle of dark, dangerous mistreatment and marginalization.

One doesn’t negate the other.

I’m a fucking mess who learned lessons in being amazing.  They exist in tandem—the broken and the brave.

And you don’t want to process that last statement.  It fights against the dichotomous thinking that we have been programmed toward for centuries.  Either/or thinking is rarely the best line of thought.  Both/and is the way that the world actually offers itself.  I am both broken and brave, at once.

The women of Westeros are broken and brave.  They are overcomers.  They fight to gain their freedom, their justice, their right to be whom they choose and not the ones they are told to be by others.  But the knowledge of trauma and its effects upon its victims lets me know, with certainty, that these women are also irreparably broken.  There are some things that you never forget.  There are some things that never stop having a hold.  And that hold doesn’t need to propel us toward evil and revenge and perpetual suffering.  Sometimes those things that have a hold are the inciting motivation for our desire to find justice and agency and bravery.  But they still have a hold—they still take a toll.

The thing that I need to keep remembering and reinforcing in my own life is that it is alright for those things to have a hold and take a toll.  It is okay to suffer the effects, and it is okay to fight for freedom from those effects.  And those two things can happen simultaneously.  I can allow both the bravery and the brokenness to exist and to be honored and to be experienced and to be felt deeply.

I am allowed to be both/and.

Sometimes my ability to press forward toward a goal of peace and justice and healing is inspirational.  Sometimes my inability to cope and overcome and heal is just as inspiring.  And it is so and should be so because I am both/and.  I am both a woman of strength and a woman who copes with weakness.  I am both a victim and a victor.  I am both broken and brave.

Learning to celebrate the difficult parts of your life and your person is not easy.  I’m certainly not to the point where I do so with consistency.  But I am closer to celebration today than I have been in a long time.

The challenges are difficult for the women of Westeros.  The moments of champion are many for these same women.  One doesn’t negate the other.  One informs the other.

In the same way, my challenges inform who I become and how I live in this world.  The bad things are not negated by the good.  The lessons don’t erase the loss.  The struggle remains real, even when it seems like I am overcoming, because there are those things that hold on—the things I can’t forget. And those things are a part of who I am, not just a part of who I once was.

Allowing yourself to be both/and, and accepting the brave and the broken equally, is not simple in its execution.  It is ridiculously hard.  It is something that I want to do, but that I am constantly told by my society that I should not do.

“Get over it.”.  “Let it go.”  “Just forgive and forget.” “Look at the bright side.” “At least you haven’t experienced [thing that one deems more crappy than your experiences].”  “There are children starving in Africa.”  “Focus on the future.”   All are well-meaning sentiments, and all are telling me to stop being the person that I was shaped and developed into, and to ignore and subordinate the majority of the things I have experienced.  And I think that desire to ignore and subordinate the broken and the bad things is a conditioned response.  I think that our society tells us that value is tied to good things, and those who experience bad things are people of little worth, or of poor character.

That is a terrible, incorrect, and damaging view—that struggles are the result of poor choices by lesser beings.  That is the root of every “ism” that we experience in our society—racism, classism, sexism, ableism, ageism, and more and more.

Instead of feeding the fallacy that my challenges are evidence of my personal failures, I would love to see a society that can live in the both/and.  I would love to feel that my challenges are just as valued as my moments of champion.  I would love to be treated as a whole—a woman who has trauma and trials and triumphs.  I would love to be accepted as I am, without judgments that minimize the effects of my past experience or tell me to cover up wounds for the comfort of others.

The thing is, I cannot cover up those wounds.  I am covered in wounds and scars, and those don’t disappear.  They might heal a bit, or stop openly bleeding, or be less pronounced over time.  But they never disappear altogether.

I have a scar across my lower abdomen from a childhood surgery.  It used to be a big, hip to hip, thick, red scar.  Now it is lower and thinner and just a touch lighter than the skin around it.  It seems to have shrunk quite a bit, as my body grew, I aged, and time passed; but that scar is still present and always will be.  And that is a part of my whole.  That scar is a moment in time etched on my body for life.  That scar is tied to psychological effects and physical limits and family dynamics and the response of my community.  That scar says all sorts of things about who I am and where I have been and where I am traveling now.  Because it says all of those things, it is important.  It is as important as this moment or any moment to come.  It shaped me and created a way of being and a way of reacting and a way of living that I would not have without it.  So, it needs to be honored and held and accepted and loved as an important part of me.

Identifying with women who overcome the worst challenges and become champions is something that most of us can do on some level.  But it takes a lot of deep consideration to understand the ways that the trial and trauma shaped the triumph.  It takes a lot of understanding to see that the victories are often bittersweet, because of the place where the moment happened, the change came, and the suffering informed the future actions that brought us to the victory.  That understanding is so needed.

Accepting my past is imperative to being in my life today.  Honoring my struggle and refusing to hide or ignore what is difficult to cope with is necessary for me to survive, to thrive, and to continue working toward moments of victory.  Being a champion doesn’t mean you are not still the oppressed and challenged and broken woman in some ways.  And acknowledging both the brave and the broken in me is so important.

Because none of us are only our triumphs.  All of us are both/and.  We are all light and dark, commingling in a storied history.  And it is time to begin celebrating that storied history.  It is time to sing and dance and toast to the storied history that includes both trials and triumph.  It is time to see the characters before us—both fictional and not—as both/and.  It is time to honor the whole person, and end the practice of trying to bleach the dark bits in our histories and our hearts.

I am working hard to love all of the parts of my life and myself.  That work is made harder by those who insist that the hard times and bad times and horrors that have been and are being endured should be hidden behind false smiles and kept behind closed doors.  I need for those around me to be willing and able to accept all of me, and to look at the hard times and bad times and horrors without recoiling in shock and disgust.

There is a moment when a character in Game of Thrones, Sansa Stark, is named by her challenges.  Her name—her title—is questioned because she was forced into marriages against her will.  The power and influence she might have is called into question because she is no longer a woman who holds her family name.  She replies by claiming that she is and always has been a Stark.  She did what she needed to do to survive, but that didn’t make her into someone other.  She has changed, but she is also the same.  Her history and her present are both tied into one.  She is twice married, but she is still a Stark in her heart.  She is both/and.

I think that it would serve each of us (and likely the whole of the universe) well to respond to and respect the both/and in the lives and personas and stories around us.  I believe that the acceptance of the light and the dark, the trial and the triumph, the challenge and the champion, allows us to celebrate who we are without the question of worth, value, purity, influence, or power.  Being who we are, wholly and completely and without shame, is only possible if we accept both/and.  I cannot celebrate and dance and play and love and live in the ways I want and hope to while others force me to question whether my value has been reduced as a result of the history I carry with me into today.  None of us can truly accept ourselves or others until we acknowledge that the dark and the light commingling is a part of our humanity, and that, regardless of what we are currently experiencing, we are still valued and loved.

We need to become a society that does not place value on one and not on another.  We need to be able to face what seems like it must be fiction due to the enormity of the challenge, and still smile and offer kindness and show love.  We need to be people who celebrate the whole.  We need to accept that the same character who is sold/married to solidify an alliance is also the Mother of Dragons.  And we need to celebrate her in both of those moments—the terrifying and terrible wedding night, and climbing atop a great beast and flying to the rescue—in a way that does not deny part of the story.  We need to find a way to accept that all have value, in each and every moment.

I identify with these characters, because I am forged in burning flames.  I have a storied past, and those moments shape this moment and the moments to come.  And I am determined to figure out the way to both dance in the darkness and dance with dragons.  They are equal parts of me.  They do not disappear, and they cannot be hidden.  They are parts of a whole, and should be honored as such.

Join me on this journey.  Let us learn to dance in darkness.  Let us dance with dragons.  Let us be both/and.

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.

Pills

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This morning I asked the dog, “Wouldn’t my mother be proud of me, swallowing up to 11 pills at once?”

Shockingly, he responded by turning his head to one side and looking at me with cuteness and confusion, wondering if I were asking him something he wanted to hear … he hasn’t mastered English language just yet.

Why, you may wonder, would that impress my mother or be a source of pride?  Swallowing isn’t usually a thing to be praised.  (My mind hit the gutter there … and now yours did, since I mentioned it, right? Apologies.)

Swallowing pills isn’t usually a thing to be praised.  (Better?)

But for me, it was a huge challenge for years to swallow pills.  I remember vividly my mom trying every possible trick she could for me to get a tiny little tablet into my system the day before procedures.  Putting it on my tongue and then having me drink didn’t work.  Cutting it smaller than its already tiny form didn’t help.  I think that the most effective, and the most disgusting, was the buying me donuts, having me chew up a bit of the donut, and then shoving the pill into the center of the chewed food before I swallowed it.  Donut holes became a semi-regular event in my life from the point when we discovered that trick.

But the thing that struck me this morning was not that my mom spent herself to the point of exhaustion and utter frustration in order to make certain I swallowed the pill and was appropriately prepped for procedures, and not that I have accomplished the task and perfected it in ways that would offer my mother pride, and lets me take only a moment to swallow my medications, but that I remembered vividly the processes of prepping and procedures for medical purposes.

It is strange what the brain holds and what it does not hold.

My mother’s last words to me were, “I really like your hair that way.”  And that was the only full sentence I had heard from her lips in many months.  Why that sentence got through, and nothing else, I cannot explain. Nobody can explain it.  But it is a sentence I appreciate.  It was fitting, since my mother’s approval was something I always strived for and rarely received, and her disapproval was often focused on my hair and its current color or style, that the last thing she said to me was that she approved of my hairstyle.

I don’t know that it was a sign or a message, but it definitely made me smile … after the initial shock of hearing my mom form a sentence and look me in the eye wore off.

What her brain lost and what it held was always a source for surprise and question and analysis and much laughter, but there weren’t really any answers as to the “why”.

What my brain lost and what it held is similar.

I vividly remember the process of getting a pill into my stomach, and I vividly remember almost every single invasive or upsetting or stressful medical procedure I endured as a child, and I always have.  But while I was cataloging every moment of the medical trauma, I was erasing every single moment of sexual trauma.  Why did my mind hold one and erase the other?  Why was one captured and one cast into some recess of the brain and locked there for years?

And my first instinct was to say that one was cause for shame and not the other, but that isn’t accurate.  I wet myself with regularity due to my body’s defect, and I was mocked mercilessly for that.  And after surgery, when I didn’t have those ‘accidents’ anymore, I was mocked in the locker room because of my scars.  There was a lot of shame tied to my medical issues. And maybe there was more shame associated with the sexual trauma, but I don’t think that one was without shame and the other filled with it.  There were aspects of shame tied to both, yet I held one in my conscious mind with great detail, and the other I forced away.

As someone diagnosed with Complex Post-Traumatic Stress Disorder, I am learning that the ways the brain forgets can be really great and amazing.  My brain shut out traumas to protect me.  And since the moment those memories returned I went into several years of meltdown, I know that my little, young self could not have coped with those things.  My 19-year-old self couldn’t cope with those things.  Some days my 41-year-old self cannot cope with those things, though I’m learning more and better skills to cope now than I ever have before.

I am also learning that my brain suffered a division when the trauma happened.  Parts of my brain stopped talking to one another, and they still can’t seem to get those synapses firing all the time.  I dissociate from time to time, blocking out things that are uncomfortable or that remind me of other things, or just breaking myself in two and living in conflict with my own thoughts and ideas.  I’m a big pile of contradiction and incoherence and cognitive dissonance.  And all of that is because my young self held some thoughts and blocked others.  And I had no control of what stayed and what went.

Eventually, both combined into one larger trauma.  Not having control of your body is bad in any sense.  But the cognition of not having control over what happened to my body in the medical sense and the dissociation of not having control over what happened to my body in the sexual abuse sense became tied in ways that I didn’t understand until recently.  And the way that tie became apparent is by wetting myself like I did when I was a child when in the company of my abuser … at age 39.   My brain made my body lose control, and potentially continues to do so.  My pelvic floor dysfunction is possibly psychological and possibly physical, but more than likely a combination of the two.

So, I am back to the start, in a sense.  But this time I am remembering all, and the medical and the sexual are one trauma, melded together in some strange ball of a loss of autonomy.  And now I lose even more, with PTSD and fibromyalgia having effects on my brain and body that I cannot control.  I can only cope.

But at least I can cope, some of the time.

At least I am at a place where I can address all the things, and know when I am dissociating, and see how the disconnects are affecting me, and learn how to start putting myself together once again.  At least I am in a place where the memories of both can be acknowledged, and the path that I took to today can be better understood, and the ways I act today and the things I now believe can be explained.

It is amazing what the brain holds and what it releases.  But even more amazing is that I am learning how I can choose what my brain holds and what it releases.  Meditation and mindfulness are showing me the way to control my reactions to thoughts, and mandalas are helping me integrate my mind, and therapy is letting me voice the feelings tied to events that I was before expected to keep secret, or to accept silently.  I get to hold things.  I get to release things.  I am regaining that lost autonomy.  And I am expressing it … loudly enough to piss a bunch of people off when I won’t comply with social norms and religious expectations.

I am screaming autonomy.

I am choosing, even though I can’t choose what happened or what will happen in my life and experience.  I am choosing how I act and react in the midst of what happened and will happen. I am no longer letting my brain do the filing without my input, and I am making certain to assess what I release and what I hold.

I likely have a 50% chance of ending up like my mom, with my mind slowly deteriorating and losing thoughts and memories and faces and, eventually, life.  And if I do have the gene for Alzheimer’s and I do lose bits of my brain to disease, it will be difficult.  But I don’t worry about that the way I once did, because I currently have better knowledge and control of my thinking than I ever have, and I no longer need to worry and catastrophize and create struggle inside my head.  I can accept and release.  Even this idea that I might lose my autonomy in some ways or someday is not a source of struggle, because I know that such disease won’t define me.

I define me.

And accepting the ways I can’t control my life and my future, instead of struggling against them is what I am trying to choose.  I want that to define me—the idea that I accept myself and my life in the moment, and that I can act and react in positive ways, even in the darkest of experiences.  That is my choice.

The thoughts I hold and the thoughts I release are mine. The perspective with which I view things is mine. The ways that I act and react are mine.  The traumas that happen to me, are not mine to hold.  Those belong to the ones that harm, not to the ones harmed by them.  And no amount of victim blaming is tolerated in my space any longer.  That I am letting go.

And I don’t know that being me, in the way that I choose to be, would make my mother proud.  There is probably a lot that she would challenge and dislike, if she were here to do so.  But that doesn’t matter.  Because I am not letting other people define me any longer.  I am not letting the events that happen around me or to me define me.  And having the pride of others, or the acceptance of others, is a bonus, if it happens, but it isn’t my goal anymore.  I no longer strive for anyone’s approval but my own.

And I am very proud of who I am.

 

 

 

 

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.

Dead Leg

Sometimes, when I am explaining my symptoms to a new doctor or physical therapist, I use this expression of “dead leg”.  It isn’t the pins and needles feeling that we commonly associate with numbness.  It is more of a lack of a sensation than a sensation.  It is like that portion of my body is just there, but not feeling anything.

Dead.

And last night I was thinking to myself that my whole self has recently turned into dead leg.  Not feeling, not sensing, not knowing—not present.

Just dead.

The events leading up to “dead self”, interestingly, include death.  And there is this tendency among people in general, and people who know me tangentially, in particular, to assume that the dead self is the denial stage of this thing we call grief.  But an awareness inside of me is confident denial is not the issue.  Something else is the issue.  Numb is the issue.

I’ve questioned whether the dead self is actually depression.  But I am not acting depressed—not isolating or becoming unproductive or changing my eating habits or stopping activity that I enjoy.  All of these are familiar.  None of these are currently happening in significant ways.

So, maybe there is a sixth stage of grief?

Maybe dead self is a thing that psychologists have missed in their explanation of the psyche after a loss.  Or maybe they confused depression and dead self, because they hadn’t experienced depression before they experienced loss, so they couldn’t notice the subtle differences.  I am in the privileged position of knowing depression well, so I feel the difference.

When people ask how I am doing, I don’t know how to answer.  I usually respond with a “pretty well” or “I’m fine” or a “good, all things considered”.  In truth, I have no answer.  And none of the answers I provide are lies, per se, but they are not actually getting to the heart of the matter either.  But the heart of the matter is deadness—the deadness inside of me, and the dead body of my mother encased in her vault under the ground.

And there isn’t a way to explain those things.

There isn’t a way to express the hurt and the longing and the confusion and the devastation and the loss and the struggle and the peace and all else.  And because it cannot be expressed it is held somewhere within, and that place where it is held becomes stagnant and then hardens and then stops feeling.  And that isn’t the same as depression.  It is a thing even more difficult to grasp or to understand or to cope with than depression.  Because it is death.  It is a little death inside of you.  The death of hopes and dreams and promises.  The death of loves and disappointments and arguments and laughing fits.  The death of relating and the death of understanding and the death of miscommunicating and the death of trying to fix the things that we never quite got worked out between us.

It isn’t just the death of my mom.

It is the death of a piece of me.

There is a dead space in my life and in my spirit and in my heart.  A space that will never again be connected.  Without words to express it adequately, we say things like “there is a whole in my heart” or “I am heartbroken”.  But that isn’t the fullness of it.  That space dies.  That connection dies.  And the dead space rests there within you.  Or, maybe in my case, overwhelms you.

There aren’t words deep or grand or expansive enough to describe.

Just dead.  That is all I can think or say.  Dead.

We cling to memories of the connection.  We try to keep that place alive in this way.  And that is good.  That helps.  But the acceptance part of grief isn’t really accepting that the person whom we loved so dearly is dead, but accepting that dead space in our heart as our new normal—as the way we now have to navigate the world, with a little bit of death in our heart.

That doesn’t have to keep us from living beautiful lives.  But it does make us live that beautiful life just a bit differently, always with a taste of loss.

So, maybe the dead self that I feel is just the deepest expression of that loss.  And maybe it will pass as I begin to accept new baselines of feeling.  But, for the moment, I still feel disconnected.

And some of that disconnect, I know, is because the world goes on around me, unaware of the earth shattering experience that I am dealing with.  People eat and drink and laugh and work and walk and talk, as though the seismic shift in the universe is only known by me.  Because it is my shift, and not theirs.  My loss doesn’t move them.  It doesn’t concern them.  It doesn’t matter to them.  They can say, “I’m sorry for your loss” as I pass through their space, but few of them are actually affected by my loss.  They keep on living and I wait for the end of the dying.

And waiting is all I can do.  Waiting for the acceptance of this new way of navigating the world, and hoping that I learn well how to walk and talk and eat and drink and laugh and work in this new way—that the dead space doesn’t grow and cover over the rest of my heart, impeding my ability to have a normal and a beautiful life beyond this event.

But I have a good therapist and a new psychiatrist and a bottle of antidepressant medication already in play.  And I know that the process of grieving takes time.  And I know that acceptance is the end goal.  So, I believe that I will reach that goal…eventually.

And I know that I have adapted to the challenge of living with the dead leg, so I am certain that I can also adapt to living with the piece of dead heart. We all have to at some point.  As long as there has been life, there has been death.  And I don’t think that will change anytime soon.  But survival depends upon adaptability.  And I have proven myself capable of adapting time and again.  So I shall survive this as well.

But for now, I’m attempting to live with dead self, and to nurture said self with compassion and space and time to do what dead self needs to do.  Once that stage is over, another will take its place, and so will another, and then another.  And on we go, living the best way we can, until our own death (may it be far from this time and come as a grace, not a tragedy).