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.

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.

Same

There is this way of speaking that has taken over much of the communication between me and my daughter, and some of my friends as well, I suppose.  We shorten things.   It just seems like a whole lot of flourish and extra syllables isn’t necessary or important.  And while, as a writer, I am a huge fan of the flourish and the big words, in life they aren’t always helpful.

So, when we are thinking, “I completely agree and have a very similar perspective on this issue”, we instead say, “Same”.

I’m in the mood for pizza.

Same.

I can’t believe the state of the world and am grieving deeply over the pain and wounding that is overwhelming millions.

Same.

I wish that I could be in La Jolla right now.

Same.

I’m overcome with grief and don’t know how to express anything clearly, but everything hurts.

Same.

Yesterday I received news of the death of a good friend of my parents.  And all day I was feeling the weight of grief.  I was feeling it not just over the loss of her life, which is definitely significant and important, but also I was mourning the loss of my own mom.  And I was drawing all sorts of parallels between the lives of these two couples and feeling for those going through what I and my family went through a year ago.

All day I wanted to reach out to the daughter of the deceased wife and mother.  But there were not words.  There weren’t words when my own mother died either.  And the platitudes and “she is with Jesus now” assurances helped not one bit.  In some cases, they did more harm than good.

So, in the evening, I finally realized that what to say was that there was nothing to say—that nothing makes that pain lessened and nothing changes the complex feelings and nothing brings back the mother that you long for now more than you ever did when she was alive.  And I reached out with exactly that: an assertion that nothing would help and that I wouldn’t pretend it might.  I offered my love.  I offered my listening ear.  And I offered my sympathies.

And she shared a huge piece of her heart in reply.

As she expressed her feelings and her struggles and her joys and her surprise and her pain, I realized that all of these long years, we have been living a parallel life.  As she spoke of her many-faceted emotional state and the journey that she had been on as her mother became sick, her father became a care-taker of sorts, and her mother passed, I could have replied with that often used, “Same”.

We were sharing a history, but doing so apart from one another.

When we were kids we played together when our parents got together.  And it wasn’t as though we didn’t enjoy hanging out, but over time, as we became old enough to not be dragged along to our parents’ social events, we stopped spending time together.  And there were times when we connected over the years—running into one another at Christmas or a special event when we were all present once more.  But those little interactions became cordial and socially acceptable, instead of times when we played with abandon or shared secrets or did all those things that come easy when you are young, but cease to be so as you grow up.

Peter Pan had the right of things, in many ways.  Growing up steals much of the honesty and joy and many of the dreams which childhood allows, and even encourages.

What was stolen from this woman and myself was the opportunity to share our similar journeys.  Until last night, we had not had the opportunity to bond over shared experience, or to support one another.  It took the death of both of our mothers to recognize one another on a path we had been walking together for years.

I’ve been thinking much today about this sameness, and this similarity, and this shared experience.  I’ve been thinking that we all felt the weight of struggles alone, and all of this time we could have been bearing them together.  I have had other childhood friends express feelings that I have struggled with: I’m not enough, I’m not good enough, I cannot compare with person X, I don’t fit in, I can’t do anything “right”, I didn’t want to treat person Y like that but wasn’t brave enough to put an end to it and went along with the crowd.   All of this time, we were all young women (and a few men) who felt alone in our struggle.  We were not alone.

We are not alone.  We are united in this struggle.

The organizer in me wants to shout from the rooftops that we need to come together and fight against our common enemy.  But the pastor in me knows that such a strategy isn’t necessarily the right approach here.  What might be helpful is for me to express continually my struggle, and to allow others the safe space to express their struggle.  Because SO MANY TIMES I find that we are coping with the same feelings, and have so much in common, and could be bearing burdens together.

I’ve said before, and will say again, that I label myself as “spiritual but not religious” because organized religion has left bad tastes in my mouth time and again.  I believe in the Divine.  I don’t name it in terms of a triune god, but I believe.  But one of the things that many religions teach, and that I think is a divine directive, is that we share in one another’s burdens—we carry the heavy shit together to make it lighter.  And for some reason the place where I grew up chants the religion like a name at a boxing match, but also chastises individuals and tosses burdens onto their backs while they whisper behind their hands at the failures of those individuals to carry the load.

It is a sick practice, really.  It is wholly other than the divine imperatives to care for and love and welcome and heal and help everyone—like literally everyone.  All of those imperatives tell us to help carry the load, not toss it on the back of another.

I broke under the weight.

So many people I know broke under the weight.

And still the weight is piled.  My daughter experienced that weight when we moved back to that area.  And I left, rather than have her live in that place and in that way where you never feel like enough and people are constantly trying to hide their brokenness by breaking the person next to them.

Today I see that we can fix this.  Today I see that we were fighting the same war, but we were all at different battle sites.  If we could have been honest then, in our adolescence, and shared how we were struggling, we could have become a powerful force for change.  We could have swept that town of gossip and lies and shaming that keep the focus off of the problems of one, only to shatter the life of another.  We could have united to bear one another’s burdens.  We could have lifted the weight and held one another up and shared a journey.

We didn’t.

But I am committed to doing so now.

The past doesn’t change when we change in the future, but it can transform in some ways.  It has the benefit of perspective, and new perspective can shed light on events, even though the events themselves do not change.  And I am ready to look at this childhood in this place with these people in a new light, and with new honesty and connection and trust.  I believe that looking at it in this way will transform not just the past, but will transform us as women and men who thought for all these years that we were alone in our struggles.  Knowing we were in it together and talking about it together in this later stage of life empowers us.  It lets us acknowledge and release the bad and lets us acknowledge and embrace the good.

And that doesn’t happen overnight.  And some events you don’t get over completely—or at least there are some I don’t think I will recover from completely.  But knowing that the burden is shared, and that I am not the only one carrying the weight of those events puts me well on the way to recovery.

So, here I am, people of my youth (and any other time period, really).  I’m standing open to receive and to offer with honesty, with trust, with grace, and with understanding the journeys—mine and yours and ours—and the events and the feelings and the burdens.  I’m here, committed to change, committed to new life, committed to carrying the weight together.

Let’s all try to open up.  Let’s try to do it before any more of our parents die.  Let’s know that the circumstances of our childhood don’t define us.  Let’s know that molds were made to be shattered in order to exhume the beauty within.  Let’s know that we don’t need “thicker skin” or to keep our business private or to hide or to hurt.  We are allowed to be—in all of our ways of being we should feel comfortable and free and alive.  Let’s stoop under the weights of our friends and neighbors and partners and brace ourselves underneath, helping to lighten the load a bit.  And when enough of us are willing to stoop down and take some of that weight, we all find relief.

Community.  I’ve studied it for a long time.  And I keep coming back to this idea, that burdens are borne together, or we are crushed.  So, in order to survive, we need to start looking at the plights of those around us and responding with the short and effective communication that my daughter and I have come to use so frequently.  Same.

There is a quote I use often, and love from Lilla Watson.  “If you have come to help me, you are wasting your time; but if you are here because your liberation is bound up with mine, then let us work together.”

It is time for us to work together.  In my childhood community, in my current community, in my social circles, in my city, in my country, in my world, and in my universe it is time for us to work together.

It is time for us to understand that the liberation of one is bound to the liberation of all.

We can only be free when we are free together.  We can only bear burdens with all of us carrying the weight.  We overcome only because we do so together.  And we do so together because in many ways we are all on the same journey—not just in the specifics of events or feelings, but in the sense that we are all evolving and developing into a better version of humanity (or we should be, at least).

We are meant to look to the person next to us, to see their experience and their perspective and the events that shape them and to declare, “Same”.  And if we cannot do that, we will be crushed under weights we didn’t imagine would ever be placed upon our shoulders.

I think we see that in the news every day of late.

We join in sorrow over things that were caused by a refusal to bear burdens of another.  Discrimination doesn’t hurt us personally—that is the burden of the gay or the black or the Muslim—so we don’t enter the fray.  And we are seeing the results of that failure to stoop and lift with our fellow human beings.  When we don’t bear the weight together, people break.  But there are consequences felt throughout the entire community when those individuals break.  You can’t escape the aftershock of the seismic events.  So, why refuse to help hold the weight that might prevent those events?  Ignoring the problems of others doesn’t work.

We lift together, or we are crushed.  All of us.  The whole of humanity.  The entire planet.

And saying it that way makes it seem an enormous task.  But it really just starts with us listening and bearing the weight of the feelings and experience of another.  A world full of people caring about the person next to them is a world that resembles what most would see as a heaven or a paradise.

That heaven, that paradise, is achievable in the here and now.

It can happen if you open up and share your journey, and listen well to join in the journey of another.  It will happen if we simply love one another, care for one another, and bear one another’s burdens.  It will happen when we hear the struggle or joy of another and can respond with a genuine agreement.

“Same.”

 

 

 

 

Bravery

I was thinking a lot the past few days about what it is to be brave.  I had a friend tell me that I am brave, and the next morning I was engaged in a guided meditation to help me be less afraid.  I am always afraid, in a sense.  PTSD keeps your system in a state commonly referred to as “hypervigilance”.  Basically, you are always assessing for threats, even in environments where there is little or no danger.  And your body and your mind and your spirit are always feeling threatened by everything.

And all of that is totally justified by some form of trauma, but it makes being brave a difficult thing, while also making simply stepping out your door a step toward bravery.

There are lots of conflicting, dichotomous, and counterintuitive things about this illness, so the whole scared/brave thing is just one, but it often gets me thinking.

I remember a day when a friend labelled links to other friends’ blogs with one word descriptors, and mine was Brave.  I think I cried when I read that.  I never feel brave.  I always feel chaos and fear and indecision and doubt and whatever other anxiety-ridden thing you can think of.  Every moment.  Every day.

And it isn’t a fixable thing, really.  You cope, but your brain chemistry was altered at a critical time in your development, so there isn’t really any fixing the problem.  You live alongside it, and you delve into it, and you learn skills to combat it, and you find ways to rationalize it.  You never end it.

Yesterday, I went to the geneticist and then to the lab.  For the next month I will wait to find out if I carry the gene that likely caused my mother’s dementia, and find out if I might also have indicators of other dementia.  That was the act that was considered brave, but somehow it was the easiest thing I did.  And maybe that is because the other things I did had elements or consequences that I might have some control over.

I have no control over my genetic makeup.  That ship sailed over forty years ago.  And if I have the gene, I have Alzheimer’s to plan for and work against, so there are things I can control after the fact, but I can’t control the result of this test.  There isn’t a way to mess it up.  It either is there, or it isn’t there.  And knowing has consequences, I suppose, but not knowing has them too.

The other things I did yesterday, like going on a first date and going to a new pool and finding my way when I got lost in familiar surroundings, seemed harder.  I felt less brave when I walked in the door to that gym, or stopped to open up my map application to find my way, or met a new man who may or may not be a good man, or got on the bus, or let that man drive me home, or stepped out my door, or started a conversation with the other naked girl next to my gym locker, or did anything that day.  And maybe that is simply because my genetic makeup is like my PTSD.

It isn’t a fixable thing.

And I can learn to cope with it, but I can’t stop my genes from being my genes any more than I can stop my brain chemistry from being my brain chemistry.

In my mind, I’m not brave.

I’m honest, and I’m practical, and I’m self-aware. And maybe those things masquerade as bravery, but they aren’t.  I face what I must because I must, not because I am stronger or better or braver than the people around me.  If I had a choice, I wouldn’t face half of what I have faced in my lifetime.  But I didn’t have a choice.

So, I guess if the definition of bravery is facing what you must, I could be considered brave, but it isn’t a state that I see myself in.  It isn’t how I would characterize myself.

I am a survivor.

I fight my way through life, and I don’t back down from the challenges that come my way.  But what I feel—what is deepest and most prevalent during those moments—is not bravery, but fear.

There was a moment in my history where I stood over a man, with a sword at his throat, and demanded freedom and justice and an end to his tyranny.  That sounds like an epic tale of a brave knight, but I was terrified in that moment, and after, when I was safely away from the situation, I cried and shook violently as the adrenaline of the moment left and the terrified aspect came to the surface.  My demands had been met, yes.  But the way I felt in and after that moment was indescribably bad.  I didn’t talk about it until years later, and even then I had to have another clarify that the moment was real—that I didn’t dream it.  Afterward, I dissociated from the event, because I was that frightened.

Fear motivates many of the things I do or have done.  I’ve been divorced for 19 years not because I was brave enough to leave my abusive husband, but because I was afraid enough to run for my life.  I’ve raised a daughter on my own, not because I am a brave woman, but because I was afraid of what might happen to that daughter in the care of another.  I’ve survived homelessness, and sexual violence, and physical violence, and living in impoverished areas, and going back to school as a non-traditional student, and working in stressful environments, and physical and mental illnesses because I have two choices.  Survive or don’t survive.  Live or die.  Make it through or don’t make it through.  And I wish that I believed it was more nuanced than that—that I contained within my being some strength that others cannot draw upon, or that I had many options but chose the best ones to get me to today.  But I don’t think it was.

Most of my life has been lived in a state of laser-focused survival instinct.  Most of my life there were the two choices.  Leave or stay.  Fight or flee.  Live or die.

Over and over and over and over, I just choose to live.

So, yes, I went and faced the fears of the genetic testing and the unfamiliar gym and the first date, but I wasn’t necessarily brave during any of those parts of my day.  I just had to choose to live, like always.

And we are all meant to survive.  The instinct is so ingrained in us that even those who choose to die, struggle in the act of doing so.  Their bodies and their minds seek to stop that death from happening.  We are designed to keep fighting, keep reproducing, keep eating, keep drinking, keep breathing, keep going.  So, either we are all brave, or none of us is brave, from an evolutionary perspective.

I just do what I was designed to do, and I keep going.

There was a day several weeks ago where I didn’t want to keep going, but I did.  I kept saying aloud, “I can’t do this anymore.”  But, it turns out that I could do it, that I could persevere, that I could keep working and keep trying and keep fighting.  My instinct to survive took over, and I did what needed to be done to keep living, even when I didn’t want to and didn’t believe that I could.

I’m not brave.  I just follow my instinct to survive.

Sometimes I hear people comment that bravery is not the lack of fear, it is moving forward in spite of your fear.  And, to some extent, I can allow that by this definition I might be brave.  I keep moving forward in spite of my fears, but I don’t think I do it consciously, and with purpose, and in ways that I find noble or exceptional.  I just don’t know how to live in a state other than fear, so I have to push through it or I have to stop living.

That might sound strange to anyone who isn’t hypervigilant and trying to reintegrate disparate parts of the brain inside their head, but to me it makes all the sense.  To me, living is being afraid.  The absence of fear is death, and overcoming fear is an impossibility.  It will always be there.  And I might be able to use mindfulness and mandalas and yoga and CBT and all sorts of other things to cope with that fear, but it will never go away entirely.  And I have two choices: live in fear, or stop living.

I go on.  I always go on.

A month or two will pass, and I might have huge relief that I may not become like my grandfather and my mother, slowly slipping away until I am a shell staring into nothing, or I might have the knowledge that I will absolutely become like them, and work to put in place safeguards that give me and my daughter the best chances at choosing the way we deal with becoming like them, and choosing whether or not to risk creating another generation of those long, slow ends.  And I might have no conclusive evidence of risk or not risk, and simply have to wait and see if I lose my mind when I am old, like everyone else.  But none of those options include a caveat that says I might not go on.  Because I haven’t survived all of these things and gone on and on and on to give up on my survival instinct now.  I will go on.

And I don’t believe that makes me brave.  I think it makes me human. I think that when it comes down to it, and we are faced with survival or death, we all do what it takes to survive.  The actual doing may be harder for some than it is for others, but we all choose living over dying by default.  And I would rather live in hypervigilant fear, going out into the world and chancing whatever it offers me, than not live at all.

So, tomorrow, I will face another day, with new fears and new challenges or old fears and old challenges, but I will face it.  And though I don’t believe I am braver than the rest, I know that my commitment to facing what comes is strong and resolute.  I will go on as long as I am able, and in the best way possible.  Even if that time and that way are both filled with all sorts of reservations and anxieties and fears.

And to all the people who are thinking today that you can’t go on, it isn’t true.  You can go on.  You were designed to go on.  Whether you are brave or afraid, you will still go on.

 

Birthday

I  started bawling while I typed out a text to my daughter.  She turns nineteen today.  I can’t even wrap my head around that.  That tiny seven pound bundle of smiles and tears that was placed in my arms all those years ago changed everything about life and love.  And I know that lots of people will say things like, “I didn’t know what love was until I became a parent”.  I don’t really subscribe to that.  What I will say is that I had never felt love so deep and so full and so beautiful until I held that gorgeous bundle in my arms.

I think this is the worst part about human development—that we forget that moment when our parent first held us and looked into our tiny face and beamed love toward us.  All the late night feedings, and lullabies, and peek-a-boos, and looks of love and joy are left engrained in the mind of a parent, but lost for the child.  And by the time we start remembering our parents’ actions and interactions with us there is discipline and disappointment and distraction between parent and child that wasn’t there in those early days when all we could possibly show our babies was unadulterated and unconditional love.

I realize today, in ways I never have before, that my own mother looked at me that way once.

It was hard, listening to my siblings express their views of my mother and who she was to the funeral director as we sat planning for her funeral.  They knew a different woman than I did.  That was painful, and illuminating.  They received and remembered love and generosity and selflessness.  I remembered a harsh and argumentative history of always feeling not good enough and being a constant disappointment to my mother.  I loved my mother dearly.  I couldn’t figure out how to like her for most of my life, but I loved her.

But once, she looked in my face like I looked into my baby girl’s face and she felt only love and joy and possibility.  I wish I had the ability to remember that moment.  I wish I knew that look and that feeling more fully.

My mother was the first person to hold my daughter at her birth.  I was divorcing by the time I gave birth, so my husband wasn’t present for the birth. (That was probably good, because his attendance might have led to me being charged with murder, or assault at the least.) My mother took his place at my side, and neither of us could have anticipated that she would be at my side for 40 full hours of labor, but she was.  And at the end of the two day ordeal, I was too exhausted to hold my own child.  So, the pictures of my baby meeting her grandma precede the pictures of her meeting me.  I was thinking on that long ordeal yesterday, and what it took to get this beautiful nineteen year old woman into the world, and how my mom was there for every moment.  And I remember, exhausted as I was, seeing my mother look at that baby in that moment, with more love than I knew she was able to give.  With more wonder than I thought possible, and with more grace and generosity and selflessness than I knew she had within her.

I didn’t understand in the moment of preparing for my mother’s funeral that the way my mother looked at her first granddaughter was also the way she viewed me.  But she did.

When I texted my daughter this morning I told her all the things I wish that I had heard my mother say to me when I was nineteen.  And I didn’t do it on purpose.  I simply realized, after offering all the love and encouragement and pride that I could muster in a text message, that I wished my mother had been able to tell me those things when I was that age.  She didn’t, or couldn’t, or didn’t know how.  And that was why I knew a different woman than my siblings—because I couldn’t remember that love from when I was so little that the discipline and disappointment and distraction became primary ways of interacting, and when I was old enough to know my mother well, we were divided by so many differences of opinion and a similar stubborn will that we couldn’t express well the love that had been there at the beginning.

It was there at the end.

The end for me was years before her death, but the first year that she began to forget my face, when she clung to me as we said goodbye after a visit and cried and repeated over and over and over that she loved me.  She was trying to make up for lost time and opportunity, I think.  To say it enough that it would sink in—be remembered.

It is remembered, and so is the moment when they placed my daughter in her arms and I saw my mother’s face turn to pure love and the fullest joy.

My daughter is one of the best people I have ever known.  And she brings me all that love and all that joy every day.  She is intelligent, compassionate, caring, kind, generous, selfless, strong, loving, loyal, talented, and exquisitely beautiful.  She follows her dreams.  She calls out the bad and promotes the good.  She gives her last dollar to someone who asks, just because she can’t bear to see people in need or in pain.  Since her childhood she has offered her all for others, climbing up on the counter to reach foods and bring them outside to passing homeless men and women from the age of seven, at least.

And while I find her utterly fabulous, we also have differences of opinion and similar stubborn wills that make it difficult for us to see eye to eye at times.  But, unlike in my relationship with my mother, I have learned to let go of some of my stubbornness, and to let my daughter hold her own perspective and pursue what matters to her.  My mom couldn’t let go of that control—the desire to shape me into what she believed I ought to be, instead of let me be the person I was.  For my daughter’s sake, I am trying to let go of that control.  Sometimes I fail, but I apologize when I realize I have done so.  I look back to those moments of late night feedings and peek-a-boos and lullabies and I hold onto that picture of love and joy, and at the humility I felt—so undeserving of such a beautiful light in my life, of a being who offered me so much and stole nothing.  And I seek to let her be that light today, without my interventions.

It can be hard to let go, as the birthdays pass by.  It can be hard to remember that moment of love, looking into a newborn face.  But I encourage you to hold onto that moment.  Remember it when your child colors on the walls, or when they pee on the living room floor, or when they break your favorite vase playing a sport indoors, or when they bring home that boyfriend with the crazy hair and the smoking habit, or when they hate piano lessons, or when they want their nose pierced, or when they quit their job, or when they marry an asshole (I mean, some of us do), or when they tell you they hate you and you are stupid and they wish they had some other parent, or when they fail at a subject in school.  Remember the light they were and the love you beamed back at them.  Remember that life is short and goodbyes are difficult and loss is devastating.  Remember that no matter who they become or what they do or how they succeed or fail that they are that bundle, placed in your arms when all there was between the two of you was love.  Hold that love close, and speak of it often, and share it with your child and share it with the world.  Because all of us want to be remembered in the end as the one who is loving and generous and kind.

Let love be the thing that is remembered, from the beginning to the very end.

Dead Leg

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

Dead.

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

Just dead.

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

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

So, maybe there is a sixth stage of grief?

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

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

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

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

It isn’t just the death of my mom.

It is the death of a piece of me.

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

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

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

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

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

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

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

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

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

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

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

Naked As We Came

 

I’m listening to Iron and Wine. It is a little depressing.

It isn’t depressing because of the death aspect. The spreading of ashes around the yard doesn’t frighten me a bit. In fact, I am uncommonly comfortable with the concept of death. Maybe that is in part due to the losses that I have endured already, and the many people that I have “laid to rest”. Maybe that is also due, in part, to the times that I have had to face my own mortality.

It isn’t something everyone faces. Many people don’t sign the pre-operative forms that express that you may not come out of this procedure but are consenting, nonetheless. Many people don’t hear the diagnoses that make you wonder if you will still be around next week or next year or next decade. Many people don’t get the calm, and totally bullshit, speech about how “you needn’t worry because it might be nothing, but we need to make certain”. (If they really believed it was nothing, they wouldn’t need to make certain of anything, obviously. They do think it is something. They don’t refer you to specialists for normalcy.)

So, I’ve stood by as they lowered friends and family into the ground, and I’ve known the threat of death enough times to know that I don’t want to be put in the ground, but scattered to the wind. But the thing that makes me a bit depressed about the Naked As We Came song, is that I haven’t really imagined scattering someone around the yard, or them scattering me. My visions of death are rather sterile, and not at all attached to the presence of persons loved or who love me. I always seem to imagine my end in ways that connect with bright lights and cold metal tables, and not with the loving gestures of saying goodbyes and sending on those whom we have known with grace and beauty—casting them into the universe in their new ashen form, and in doing so, letting them go.

I remember after my friend Charles died, I spent a lot of time around his place and his family. There was something comforting about being near them, and they were just a bunch of good guys, in general. One day Pops, Charles’ dad, blurted out, “Catch!” He tossed me a little box wrapped in brown paper and I caught it.
“That’s him,” he said, almost too matter-of-factly.

But it was very matter of fact. It was a fact that this little box of ash held all the matter that was Charles. Charles + fire = this little six pound box. Holding him in my hands was not really all that significant. It had been significant to hold him before, but now all passion and connection and feeling was lost.

I’m not cold and crass in the ways that that statement might seem to express. I said my goodbyes as he lay dying in the street…crying out to the sky with a voice so pained that it hardly seemed my own. Sometimes you feel pain in ways that make your own pain foreign to you. I have that experience a lot, actually. Probably because my childhood made me an expert at dissociation. I can stuff my pain into hidden places and not find it for ten or fifteen years.

But I digress…

So death is not the struggle—not the thing to fear or fight against. But the not having someone who scatters those ashes is a fear. Or maybe not a fear, per se, but more of an unfulfilled longing.

My dad recently chose to impose a DNR and remove medication from my mother. She is in the later stages of Alzheimer’s and has spent most of this year in a nursing facility. My dad cared for her for the past several years, but she is unable to communicate, and doesn’t always cooperate, so it became impossible for him to keep caring for her at home.

I watch him now (or listen to him, I suppose, since I haven’t seen him in a year) and I see the ways he mourns this loss, slowly and deliberately moving through a grief and a death that doesn’t seem to have an end. Alzheimer’s is brutal that way—it takes so long to bring about the end.

I see him care for her in ways that I couldn’t have imagined ten years ago. It wasn’t that they didn’t love one another. I think they always have on some level. There were worse times and better times in their relationship, for certain, but that is what you sign on for when you vow “for better or for worse”, right? But these last few years, watching him become her caretaker and watching her slip from adult to teenager to toddler in her mindset and capabilities, I have seen something beautiful. I have seen a kind of love that my parents never allowed one another in their younger, more prideful, more strategic periods of living. Because when it all falls apart the need for one another becomes so great that all the other things sort of disintegrate. The need to be right, or to dominate, or have things be fair, or to maintain your autonomy, or any number of things that we insist upon in our relationship, all faded away for them and they became wholly devoted to one another. And some of that devotion was borne out of the reversal of their roles and an ability to show a side of themselves that was previously held in check or deterred in some way. My mom was always a control freak, until she lost control of her own mind. And my dad was always dependent by default because of that. And this period in their lives has flipped that relatedness on its head. My dad is the one in control and my mom is dependent upon him for all things. It allowed parts of them to be brought to life and strengthened their relationship, even while it slowly brings an end to their relating to one another.

And, while I don’t wish a slow, debilitating death upon anyone, least of all myself, I find myself envious of their experience in some ways. The romanticism of giving up everything for the one you love. The commitment to keep fighting and keep loving someone else through the thick and thin of life and relationship. The beauty of a history that can be passed on and can create legacy where once there were just a couple of lives. These things are the things that my life still hasn’t held.

And it isn’t that I am desperate for those things now. I’m not. I’m rather resistant to the idea of being tied to someone or not having autonomy or dealing with the complicatedness of joining lives. But there is something about having those things in my old age, in the spreading of my ashes around the yard, that seems very desirable, and the knowledge that I do not have that is what seems depressing, at present.

Of course, my beautiful daughter would scatter me to the wind with love and blessings and grace. I won’t just get dumped in the trash, thankfully. I’m sure that all the goodbyes spoken and felt will be beautiful and loving and good. But, that care and love and building of a home together are still such lovely ideals.

And here we have it again. The life of contradiction. The dichotomous being that I am.

I want to be alone, but I want to build a life with another. And you can’t really do both, I don’t think. I love the “both/and” option, but I don’t know that it is always a possibility. I can’t really avoid relationship and also have an ash scatterer in my life. And that is also depressing. Because it means I need to choose. And choosing means summoning a bravery that I’m not sure I currently have at my disposal. Because both options require what I haven’t yet got. One requires the opening of the self to the risk of being hurt and damaged in new ways. One requires giving up the ideals and the futures that Naked As We Came offers, and letting go of the ash scattering love. Both seem too difficult to accomplish today.

They are too difficult to accomplish today.

And they were actually too difficult for any partners in history to accomplish in a day. I suppose that is a comfort. It took 45 years for my parents to find the place where this transformation happened and I could see their love in this new light, so it might take some time for anyone to develop this idyllic relationship.

Your ash scatterer doesn’t just magically appear, I suppose. They are forged over time.

That seems a bit less depressing. That offers a bit more hope.

Maybe I can still build a home…after I am ready to risk. Certainly not today. But maybe someday. Maybe soon.

Hopefully, before I become ash.