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.

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.

Stagnant

It is one of those days.  It is one of those times.  It is one of those periods where I go through this stagnant water sort of existence.  The time goes by and the life moves on around me, but I am just standing still, staying the same, and slipping away from my own life and self.

It isn’t deliberate, of course.  It is all wrapped up in my psychology and my physiology in ways that I can sort of explain but cannot fully understand, even with my genius-type brain and self-aware spirit.  I avoid.  I isolate.  I turn my back on the world because I want to turn away from feeling, I guess.  Or from my memories.  Or from my current situation.  Who knows which?  Maybe all at once.

I change playlists on Spotify.  I can’t write about this sadness while listening to happy music.  Bon Iver might work.  Let’s try that.

Better.

But it isn’t really sadness I feel.  It is more like distance that I feel.  The otherness of being me, and the knowledge that I am really other right now, keeps me hiding in some ways.  I don’t feel safe around people.  I feel like my pain will fall out unexpectedly, and pain scares people away.  I guess they are afraid it might rub off on them—it is contagious in some way.  Or maybe they feel like I do.
Maybe they feel tired of feeling.  Maybe they have too much to feel also.  Too much to think about.  Too much to fix.  Too much to deal with.  Maybe they can’t let my pain near because their own pain is too much to handle. Carrying a bit of mine would break them, perhaps.

But I don’t think it works that way.  I think that the burdens of others can be light to me.  Solidarity.  Understanding.  Release.  All that happens when we carry for one another.  And I find it easy to carry the burdens of another.  I’d rather carry theirs than my own.

I turn the music louder.  I’m drowning out the voices in the street, and in my head.

There is some chaos happening on the block.  Guys repeatedly opening and shutting their trunk and hollering back and forth to one another as they trade places … one by the trunk and the other in the car, then the reverse.  Why they don’t just both stand by the trunk and resolve the issue and then return to the car is beyond my comprehension.  Ah…they have just taken that thought from my brain and made it reality.  They are both behind the car now. Whatever work they are doing, it seems meticulous and complex.  I wonder if it actually is meticulous and complex.  Or maybe they just aren’t terribly skilled in whatever task they seek to accomplish.

And again I sit here thinking outside myself.  Thinking of nothing of import.  Watching the world happen—watching life happen.  I am not life right now.  Not today.  I am stagnant.  I am avoiding.  I am isolating.  Because I can’t cope with life right now.  And I’m not even sure what part of life is challenging me.  I just know that it is.  That I don’t want to deal with it—that my psyche cannot deal with it … whatever “it” may be.

I stare out at the yellowing leaves gently swaying before run down houses.  It is both beauty and blight. That thought helps.  The admission that the life outside of me—the world outside of me—is also beauty and blight. I take them both as truth. I hold both.  I walk in both.

Maybe that is what I need do with myself.

Accept both beauty and blight.

Accept that this stagnant living is a part of the process toward wholeness, and just ride it out.  Know that Monday I get to tell my therapist how I feel, and that I pay her more than enough to carry my pain.  Know that the brilliance and beauty of my being will once again shine out in bright color above the run down shell of my history and my current struggles.  Or that maybe, just maybe, others already see the beauty I am challenged to acknowledge.  Just as I see a beauty outside my window that many cannot acknowledge.

So, I will sit in my little corner of the world and watch the living happen outside my window, and see the beauty and the blight—the beauty in the blight, perhaps.  And, one day soon, I will venture out into it.  I will eventually embrace living again.  I know this to be true.  I will become life and movement and flow.  Maybe not today, but soon.

I see the man across the street quickly look away as I look up and survey the block once more.  He is watching me, in my isolation, from his front stoop.  Maybe I am closer to life than I know, as he pulls me into his by watching me write up here in my box of brick and glass.  Maybe I move more than I know.  Stagnant water can give birth to life.  All sorts of things grow from it.  Even though I don’t feel like I am actively living, life may be happening because of me.

I think I will hold that close.

Even when life doesn’t seem to flow freely from me, there is still life all around and in me, in some sense.  And I will hold on to the beauty of that life, until I am able to let the beauty of my own be freely acknowledged and felt.