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.

Too Much

Yesterday was too much.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today is a tolerable amount.

Letting Go

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

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

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

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

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

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

And I still refused to let go.

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

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

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

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

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

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

And in that moment I started to cry.

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

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

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

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

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

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

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

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

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

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

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

I need to let go.