Done

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And we are slowly dying of survival.

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

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

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

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

So, where does that leave me?

Done.  But not done.

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

I don’t know.

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

And that sucks.

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

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

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

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

For now, I fight on.

Up Again

It’s been difficult to write.

That’s not entirely true.

It’s been difficult to write something that doesn’t sound like suicidal ideation blended with complaint and condemnation and a little bit of protein powder to make an “I fucking hate everything and everyone and can’t remember why I keep trying at life smoothie”.

And I am relatively certain that nobody wants to read that.  Or taste that.  Or whatever.

On the bright side, I’m not literally suicidal.  And all sorts of pop songs are cycling through my brain—not death metal—so, all is not lost.  Though I did tell my dad yesterday that things were going to get very Dantesque around here if I don’t get a ruling in my case soon.  “Abandon all hope, ye who enter here”.

But for the moment, I am only a depressing mess in written word, not in other facets of my life.

Today I have been wondering about that a bit.  And I am wondering if there is an element of true self and false self, or of seen and hidden, or of private and public, that is expressed through the writing and being.  Is there a tie that binds my writing with my deepest feelings, and keeps it honest?  Or is the best of me brought out in person, leaving the struggle for the page?  Is there some way that my craft expresses only one bit of me and not another?

I don’t know how to answer that.

And now I am tired.  Tired beyond all telling or explaining.

Just considering one or two questions exhausted me.  And my splint just hit buttons without my consent and tried to send my document over the internet for translation?  What the fuck, splint? Why are you acting out?  I know why the dog and cat and offspring are cranky—not enough play time, no fresh litter liner, and no access to cigarettes or boyfriend, respectively.

And I am cranky because everything and everyone else needs and wants my attention and affection and compassion and concern.  But I don’t even have enough of that for me.  I can’t give what I don’t have.  But I keep on trying.  I’m a fucking bleeding turnip.  I’m a fucking bleeding stone.

So, while the dog is fed and the cat is sleeping in the window and the temperature is below 80 degrees and the daughter is out, I’m going to stop trying to express my thoughts and start taking a nap.

Because the one thing I know for certain is that no matter how many times I fall, I’ve always gotten up again, and I think that is the truth for all of us in this household—whether I hold us up, or whether the others lift me up, or whether we all take turns dragging one another from the depths.  And lying down this afternoon gives me an opportunity to wake in an hour or two, and get back up again.  Rested a bit, I hope.  Ready to fight—in the good and righteous way where we make it through life no matter what challenges are thrown our way.  And the longer I have fought, the more I have learned that you stop the monsters by throwing back love and kindness and good.  So, I need to regroup and give myself the attention, affection, compassion, and concern—the care and love and kindness—so I can keep putting it out into the world and overcoming the challenges.  That’s right: We fight with care and love and kindness.  It’s the only way to win.  It’s the only way to get back up again.

 

Food Chain

I’ve watched this progression happening inside my home over the past month or so.  The container garden in my sun porch at some point brought little flying bugs into the environment.  Whether they came from the soil or from the great outdoors is unclear, but they arrived, nonetheless.  And I have tried several remedies that promise to remove the microcosmic infestation in the front window, to no avail.

But the progressive part is that as the population of the tiny insects increased, so did the incidence of spotting arachnids.  Spiders.  I hate them.  I have an irrational fear of the spiders.  I’m the Ron Weasley of the real world—freezing, crying, losing the ability to speak, and basically freaking out when a spider comes calling.

For the most part, the arachnids have been tiny, in correlation to the tiny bugs, I suppose.  So, I am coping with relative sanity.

Next have come the “creepy bugs”.  Someone once told me not to kill them, because they consume spiders, so they are apparently a friend to the arachnophobe.  But they are no friend to me, because I consider them creepy.  They look downright scary.  They are some sort of centipede, I suppose, but they have legs jutting out the bottom en masse, and they have a symmetrical wealth of leg-like protrusions on the top of their bodies.  I’m getting a shiver up my spine just imagining them for long enough to describe them.

I remember a time with my friends Nic and Adam had a snake in their second floor apartment.  We lived in the same apartment complex, and when the snake showed up in their environment, I immediately jumped into anti-snake mode.  That meant a concerted effort to trap and kill any and all mice or rats that could be present in or around my apartment.  I’m not sure how you snake-proof a home, but the concern I addressed was the food supply for snakes, not the snakes themselves.

I never had a snake in my apartment.  I did catch some mice.  And the mice were present because some lady in another building on the complex had made it her personal mission to capture and send to shelters the cats that lived around the apartments.  Had she left them be, the cats would be eating the mice, and the snakes wouldn’t move in because they would have no food supply and a potential predator in the cats.

So, as I watch this little cycle of life in my window sill, I think about where I sit on the food chain.  And by this I do not mean that I am concerned with who or what might consider me meat.  By this I mean, what threats and resources are affecting my life, and why.

I’m not high on the list as far as human hierarchy goes.  I’m a disabled, impoverished, woman.  So that is at least three strikes against me.  I’m also white and educated, so I am offered some privilege.  I suppose if we were to consider the hierarchy of my society (and several others) a food chain, I might be the spider. (Ironic, since I am petrified of them.)

I might be the one who had a few being “below” and a few “above”.  I am not in the worst position, but I am not in the best.  I assist others, but I also need assistance.  I live in this middle space, clinging to a rung halfway up the ladder.  And it gives me, I believe, an interesting perspective.  I can relate to those with more and those with less.  I can relate with the “haves” and I can relate with the “have nots”.  But there are days that I cannot relate with either—or I don’t want to.

There are days when I want to leave this underserved, loud, dirty, potentially dangerous area.  I get tired of the noise—the sirens, the yelling, the gunfire.  I get tired of the long commute to anything and everything.  I get tired of not fitting in or looking right or getting stopped by the cops because of my white skin.  I get tired of being followed by dudes yelling “damn” at my ass.  I get tired of trying to explain away how or why I live here without outing myself as poor.  And I get tired of all the other people who seize stereotypes and make assumptions about this place I am tired of being in, because despite its faults, this is my home, and there is much beauty and strength in this place.

There are days when I want to be a person with greater means.  There are times that I feel jealous of the friends with cars and homes and second homes.  There are times I want the “American Dream”.

There are more days, however, when I want to scream at the people who have all of this, and to tell them what selfish, self-serving, privileged bullshit they participate in, without even knowing.  I get tired of people who are wealthy pretending they are poor.  I get tired of people whining about the inconveniences of their gigantic remodel.  I get tired of people saying they are broke and then going out to dinner every night.  I get tired of being associated with this type of upper-middle class person just because I am white and educated.  I get tired of people assuming that I belong with the “them” while I feel like an “us”.

Frankly, it is exhausting to be in this middle space, between two worlds, because I feel like I must constantly critique and defend one to the other.  I want everyone in my neighborhood to know that there are some generous and kind, rich, white people.  I want everyone who would not desire to set foot in my neighborhood to know that it is filled with intelligent, hard-working, kind people.  I need to constantly justify all the things to all the people.

And then there is the added stress of my own situation needing to be constantly justified.  I need money.  I need help.  I need time.  I need energy.  I need surgery.  I need to make it sound acceptable to have all of these needs, or people refuse to take seriously or meet those needs.

The middle is an impossible place to live.  You can almost touch the better things, but if you reach up you risk falling back down into a worse space.  So you stay, clinging to the little that you have.  Hustling and hoping.  Wanting more but not able to live through less.  Clinging to the place where you have barely enough to survive.

If that sounds depressing, it is.

There are no questions as to why my antidepressant medication dose keeps increasing.  This rung is a depressing one.  This middle of the food chain feels like a constant threat, but also like a huge blessing.  I’m not at my worst.  But I am also not at my best.

And here we arrive at the statement “ignorance is bliss”.  Because if I didn’t know the best, or the worst, I wouldn’t feel trapped in this middle, fearful of losing my grip and too paralyzed to attempt upward mobility.  The people around me hope with an unyielding strength I have never seen before.  They keep believing in the more, in the higher rungs, and in a new and better day.  I know that the new and better day is not what it appears to be.  I know that there is just a dollar or two between rungs.  I know that there is prejudice at the top that keeps those with enough dollars to move up tumbling back down.  I know that there is abundance and that it isn’t being offered to the people on the lower rungs.  I know that if the people above would just share, the whole fucking ladder could turn on its side, leaving us with equity, and even footing, and no need to compete at the climbing.  I know that those people don’t share unless it is in their self-interest, and their dollars come with strings attached.  I know because I am in the middle.  I know because I am the spider.  I know because I have one foot in poverty and one foot in opportunity.

The proverbial food chain allows for ignorance at the bottom and ignorance at the top.  But the middle is the space filled with knowledge—frustrating, hope-stealing, anger inducing, devastating knowledge.

I know poverty and possibility.  And I am not better off for it.  I am tortured by it.

The wealth of the top is achieved upon the backs of the ones at the bottom.  We are the macrocosm of the microcosmic activity in my window sill.  We consume one and escape the other.

And I can’t stop thinking that this is wrong.  I can’t stop thinking that humanity should be behaving with a more evolved and more educated system than the insects.  I can’t stop feeling that we are very far from what we were intended to be, and that the ladder and the food chain and the striving and the inequity are all distractions from where our attention ought to be placed.  I can’t stop believing that we should be placing our attention and energy on justice—on ending the ladder.

There is this line spoken by Daenerys Targaryen, a character in J.R.R. Martin’s Song of Ice and Fire Series, that mimics the sentiment that I often put forth.  After the many powerful houses of the era are named and called spokes on a wheel, she says with great conviction, “I’m not going to stop the wheel, I’m going to break the wheel.”

In saying this, she expresses that she will not simply be the newest in the line of leaders that overtake the current system.  She is, instead, going to destroy that system.  She is going to make a new way of being possible by taking apart the system of injustice currently in place.

I’m going to break the wheel.  I’m going to break the ladder.

I’m going to create a new system, and not allow the once unjust and oppressive way of being to survive.  I’m not going to tolerate the present and hope for a better future, but I am going to smash through the present to create a new present.

What if we stopped being a glorified food chain and broke the ladder?  What if we let go of the ideas of “earned” and “deserved” things and status?  What would Daenerys do today?

WWDD: What Would Dany Do?

How do we break the wheel in our own society?  How do I stop being the spider and consuming the fly?  How do I keep the creepy bugs from chasing me?  How do we create a system that doesn’t look like the unevolved and inhumane clamoring for power and money and resources, and instead looks like cooperative and compassionate co-existence?

I’m tired of being in the middle, but I am more tired of the idea of the middle.  I’m tired of caste systems and hierarchies and patriarchy and all the other systems of oppression and power that make us predators or make us lunch, depending on the situation.

It is time to function on a higher plane.  It is time to break the wheel.  It is time to end this system and find a new one.   It is time for human beings to step outside of the food chain, and use our enlightenment for good and not for evil.

It is time to stop treating one another like meat.

 

 

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.

Plans

Yesterday I received a rude message.  It made accusations against me, because I had posted on Facebook both an update to my fundraiser, requesting donations to pay bills in May, and a request for pictures of items my mother had painted, to utilize at my tattoo consultation.  In the mind of the one offering the rude message, these two things were linked, and I was asking for money to pay for “luxuries” like tattoos.  This is untrue.

And I could probably create an entire book about how paternalistic judgments of how the poor are “allowed” to spend their very limited resources are completely unnecessary and unwarranted and unwanted.  Trust me. The poor have a far greater understanding of thrift and priority and hard work and collaboration and kindness and care than most people.  Until you can hold a single $5 bill in your wallet for two months without spending it on anything, or furnish a household using only the items others discard, or own a wardrobe where every article of clothing was purchased on clearance or secondhand, don’t tell someone with limited resources how to use their money.  They know far more about money and value than you could imagine.

But I won’t focus on the aforementioned paternalistic judgments today, because what I have been pondering more fully is the idea of making plans.

The tattoo artist I met with last evening is booking appointments for January right now.  If I choose to have him do this tattoo (which will be an amazing commingling of what I had imagined as 2 tattoos), that honors my mother and my daughter and covers most of my right arm, I will need to wait until next year before any inked needle pierces my skin.  So, last night we talked about design and created a plan.  I spent no money.  And I used the Facebook comments as a forum for explaining that I had spent no money, nor would I spend fundraising money for tattoos, or any other personal entertainment or luxury items.

But later I was thinking about how great it is that I am even making plans for next year.

When you have as much disease plaguing you as I do, and when you have so few resources that you aren’t sure how you will make it to next week, you could posit that plans are something superfluous, and that the present moment is the only time and place where the focus should lie.

I think that would be a sad position to hold.

Please don’t misunderstand. I work very hard to live in the present moment—to put the past behind and to reduce anxiety or worry that comes from looking forward.  I love the present, and being present in each moment.  Mindful living, where you fully embrace and enjoy each moment as it is, without judgments or adjustments, is living that I am working toward every day.  I meditate, and color mandalas, and do yoga, and work to taste my food rather than devour it, and allow all sorts of sensations and emotions to arise and coexist and leave without trying to change them.  Being mindful in the present is extremely important.

But the future, and living toward it, is also a beautiful thing.  I sometimes wonder if my life will go on for many years, or if my days are short in number.  Especially lately, in the face of testing for early onset Alzheimer’s disease, I think about what my end might look like.  And while I am not worrying over it, and will accept my end with as much grace and compassion as I am able, no matter what happens, I love the idea that I am still planning a future.

I am planning a wonderful future!

I was browsing in a boutique last night.  And the first thing I said to the sales woman when I walked in was, “I have no budget for clothes right now”, but that wasn’t where we left things.  I also told her that I love every outfit that comes up in that boutique window, and I nearly give myself whiplash as my bus goes by the shop, and that one day when my finances are better I will definitely be in to purchase some clothes.  As the conversation continued, at one point I commented, “I in no way believe that my past or my current situation define what happens in my future.  I absolutely believe that I will have better circumstances in the future than I have today.”  The shop keeper echoed my statements, and we had a lovely philosophical discussion about the practical subjects of our lives.  And that moment was filled with hope.

Later, while I was walking down the avenue, I reflected on that conversation, and on the earlier tattoo consultation.  I decided that plans are a sort of miracle for me, and likely for people with situations similar to mine.

I cancel plans often.  There are many days when my health hijacks everything and leaves me in a state where I cannot do what I had planned to do.  But despite the fact that I cancel often, I keep making plans.  I could sit at home every night rather than disappoint others and upset calendars with rescheduling.  I don’t.  I keep placing meetings and social events and mating rituals into the little boxes that frame my time, even when I know a good percentage of those boxes will later be altered.  I keep living, even when life isn’t easy.

Realizing that I keep living in these little ways brought up thoughts of long-term planning.  And I also noted that I have long-term plans.  I plan on having a home filled with things and people and animals I love.  I plan on growing old.  I plan on getting married, or living in a long-term partnership.  I plan on being near the beach.  I plan on having resources.  I plan on finding a way to create art that funds my existence.  I plan on having enough and not feeling any lack.  I plan on having a full and rewarding and beautiful life.  I plan on being covered in tattoos!

There is so much future hope in the way I live today.  And, interestingly, I find that the more time I spend focused on being present in this moment, the more positive my plans for the future become.  The more meditation and mindfulness exercise and mandala coloring I do, the more full and rewarding and beautiful my future life seems.

A few weeks ago I had a date with a man, and when we eventually got around to setting a second date, he followed up the planning with a “we will see what happens” comment, that sort of felt like it gave him permission to flake out on the second date.  At the point when he began to flake on the second date, saying he was still stuck at work, I abruptly ended my connection with him.  I didn’t do it to dump him first, or because I thought he didn’t like me, but because he seemed to be in this space where “we will see what happens” trumps “we will”.  I didn’t want to be in that space with him.

I want to live in a space where planning for a great future happens, and speed bumps are slowly and carefully overtaken, but that doesn’t make me turn away from the fabulous things I see ahead. I want to live in a space where the best and the most and the loveliest are assumed.  I want to plan for a life that is outrageously good.  And I want to put all sorts of energy into the present, in order to fight for that future.  I don’t want to see what happens.  I want to shape what happens.

This week has been filled with conversations with a lovely woman.  And she and I have been looking for a time and space where we can have a first date.  And while there are no plans set in stone, and no little boxes on the calendar that currently hold her name, we both see only a future where we get to spend time together.  “We will be in touch.”  “[We will] talk soon.”  “We will find a good spot.”  “We will do that another time.”  “I will teach you about that.”  “I will show you when I see you.”  “I’ll tell you that story when we go out.”

A future planned together, even without definitive plans, is far superior to not committing to anything that might sound like a plan for a shared future.  And a future planned with good things and fullness and love is far superior to waiting to see how things transpire and what life hands you.

For many years now, I have been a “we shall see” type of person, who would wait for what life handed her and then cope with the consequences.  But the last couple of years have brought about something new.  They have brought out the “I will” person.  And she plans for the best possible future, even while the present threatens to overwhelm her and the past pulls at her ankles, attempting to drag her underground.  She assumes that better things are coming.  She believes that life will offer her more.  She knows that the divine wishes her survival.  She knows that she is allowed to—meant to—thrive. She makes plans.

I make plans.  And they are not based on what I currently see around me.  They are based on what I know lies within me.  And what lies within offers all beauty and fullness and goodness and grace and love.  That is the future I am planning toward.

So, on a day next year, I will have Joseph add some fabulous ink to my right arm.  And I will pay for it with money I have earned, either through my slow and steady work or through my long and arduous fight for disability payments.  And I will shop in that little boutique, and take some of those coveted clothes from the mannequins in the window and put them on my body.  And I will weigh less and cope with my illness more. I will be more self-compassionate and I will trust and love others more than I do today.  I will have an amazing partner, and get married in a pink dress, and live on the waterfront, and travel to beautiful places and have money in my bank account and on and on and on…

Because I plan to live the best and most treasured life I am capable of living.  And even with over twenty forms of illness to live with, I am confident that I will be capable of living in amazing and wonderful ways.  If at some point those plans need to be cancelled, so be it.  But I’m not going to cancel a beautiful life before I have planned one.

I’m going to plan one, and do my best to see it through, with every little box of time containing something or someone amazing.

With every little box marked “LIVE”.

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.