Accidentally

My dad left only about two hours ago, and already I have realized that I accidentally left my handicapped parking placard in his vehicle.  I suppose this is one accident less than the two from his visit just weeks before, when he accidentally took my spare keys and accidentally left his air mattress and pump.  Regardless, it seems there is always something left or taken without us having meant for it to be so.

 

While he was here I accidentally got him a parking ticket.  I meant to move the car from one street to another, since one is free at night and another is permitted parking only at night.  I was late in my duty and saw the ticket writer moving along the street as I went out to move the car. Too late. The ticket was already written and he wouldn’t take it back and offer a warning instead.

 

A few hours later we were off to lunch in the backseat of the vehicle of my friend and his husband.  It was snowing out, and we were all pleased that the “snow” function on the new Range Rover worked exceptionally and kept us from sliding into the intersection where the road was slick from precipitation.  Unfortunately, the vehicle behind us was not a Range Rover with a snow function to choose, and we were struck from behind. Nobody was hurt, thankfully. (Though I have had a headache since and am inclined to claim that being jostled has thrown my vertebrae off center–but know that my physical therapist can just push those babies back into place next session and likely fix the problem, so I’m not ready to file an injury suit just yet.)  But it took some time to exchange information, and our friends needed to go to the police station after lunch and file reports for the collision, and will need to take the car in for repair.

 

Accidents happen often.  

 

And not just the collision kind, but the kind where you aren’t paying attention to your things or your words or your actions with enough focus to make certain that you aren’t saying or doing something that is potentially harmful.

 

My dad and I also discussed, at length, the type of accident where people’s words are accidentally stupid or hurtful.  Because people don’t seem to pay close enough attention to their surroundings to understand that they are leaving something out.  And generally the thing left out is compassion for a person’s situation–empathy.

 

There are so many statements that have come across our paths that are unintentionally hurtful.  

 

I understand how you feel.  You must be lonely. When are you going to find a new partner?  You should [insert obvious medical advice we have already tried].  Your partner/parent/child is in a better place. You’re young, so you you’ll find someone new.  

 

All of these things are meant to be kind, but they accidentally cause even more wounds.  They aren’t helpful. And what would be helpful is simply to not try to identify or give advice, but to say that you don’t understand, but that you are ready and able to listen, to perform household tasks, and to help in practical ways that give a person time to rest, heal, and grieve in the ways they need to do so.  

 

As a chronically ill individual, I have a whole set of ways that people accidentally offend, atop the normal process of grief and singleness.  I have people who tell me to get well soon–which I won’t. I have the constant onslaught of home remedies and stories of “my [loosely connected acquaintance or distant relative] who did thing X and was healed of their illness, which are unsolicited and annoying, because I have a team of 13 specialists who oversee my care and some raw honey is not going to be the thing that all of them missed as a magic cure.  The other night my cousin said, “If they keep looking around the doctors are going to find things wrong.” Later my dad laughed at me as I recounted that statement and how badly I wanted to reply that medicine doesn’t work that way, and I am not a used car. Things must actually be wrong for them to diagnose me with an illness. They don’t make up illnesses so they can bill you for a new pancreas! It was another accidentally, really weirdly, delivered comment that made me feel like my situation isn’t one that others take seriously or treat with validity and respect.  

 

I am not saying at all that my cousin, or others, don’t take me seriously or treat me as valid and respected.  Quite the contrary! But somehow, when it comes to these statements, their care for me and their understanding of and care for my situation don’t align.  They accidentally get it wrong.

 

So, how do we change that?

 

I wish I had a clearer answer.  Because I can shout empathy, listening, and validation from the rooftops all day long, and people will say, “I’m a great listener and your feelings are totally valid.”  But the disconnect remains. I think there is a big difference between hearing what a person says and feeling what a person says.

 

My dad is of the mind that until you go through grief of this depth, you can’t understand and will continue to view things in a way that is incomplete–and, therefore, will continue to say the wrong things.  

 

I’m not of that mind.  I’m not of that mind because I know people who suffer physical pain and still don’t have empathy for my physical pain.  And I’m not of that mind because I have a few friends who are deeply aware of what I am feeling, even when I am doing what I believe is a good job at hiding my true feelings–they see through my act.  I’m not of that mind because people who have suffered similar experiences to mine can shut down in ways that I cannot, and can ignore the past in ways that I cannot, leaving no room for empathy, even though they know exactly how it feels to experience that pain.  

 

Instead, I think that we all have the capacity for empathy, but very few of us have the strength of will and the courage to open ourselves in that manner.  Because doing so means deliberately seeking to feel the pain of others. It means to share in their sorrows–not just on some surface level where you offer the accidentally insensitive platitudes, but truly feeling that sorrow.  And why in the world would we want to add sorrow to our lives??!!

 

But the thing that is important about sharing in sorrows is that you also get to share in joys.  When you share in the sorrows in deep and meaningful ways, you also share in joys in deep and meaningful ways.  So, letting in the suffering means letting in the celebration. Letting in some darkness means flooding the space with light!  Who would want to miss out on that??!!

 

The people who see me in my darkest moments also are invited to share in my brightest and most glorious moments.  And those are really fabulous! I pour so much love into the people who love me truly that it is almost ridiculous.  I’ve probably loved some people so well that it has frightened them away, because they were not accustomed to such unfettered, unconditional love and it felt awkward or foreign.  But those people also dealt with me in the depths of my despair, which was extremely difficult, I know. And the reward isn’t likely to be equal to the expense, but that is just the way that life works out, I think.  

 

The risk in life is often greater than the reward.  But that does not mean that it isn’t worth it. That doesn’t mean the experiences and the people and the adventures are not worth it.  Because the idea that we shouldn’t move forward unless the reward is greater than the risk is one that was manufactured by the modern man, not one that has always been a part of humanity.  It is an accident of our economy that we weigh the risks and decide that the safe bet is to not open up. We keep closed our bank accounts, our doors, and our hearts because the risk seems to outweigh the reward.  But in doing so, we have made a grave error. Because life happens in the accidents, more often than not. We cannot plan for every outcome. We cannot keep “safe” by keeping distant. And keeping ourselves closed off from everything and everyone just makes us more susceptible to being left alone in our tragedies, should they arrive accidentally.  

 

We need to open up and find that empathy and feel for others and with others.  We need to share sorrows and joys. We need to stop weighing what we think will be the consequences and throw the risk/benefit analysis out the fucking window.  Life isn’t a series of rewards assessments. Life is often a challenge. But it is often an adventure!

 

So go out there and make your accidents be ones that aren’t based on selfish, closed-hearted living that causes offense to those who are suffering.  Make your accidents be the kind that are derived from throwing caution to the wind and running headlong into feelings and actions that let you know the deep lows and the exhilarating highs that life has to offer us as human beings.  Because that is amazing and wonderful, and, I believe, what we were designed to experience.

 

Use that empathy.  Feel deeply. And experience a full life.

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.”

 

 

 

 

When The Pain is All That Is

When I was younger I used to write late at night often.  I was a single mother, trying to raise a child and finish college and figure out life all at once.  The late nights and the early mornings were the times I could write without taking time away from my little girl.  Early mornings were usually reserved for assignment completion, since my brain was fresh and unencumbered by the thoughts of the day to distract me.  But at night, the emotions were what flowed onto the page.

I used to write with ink pen and notebook … I suppose most of us did.  But for me it was an emotional expression that needed the feeling, the movement, the flow.  And you could tell whether I was feeling nostalgic or angry or confused by the way the letters formed and the speed with which they formed and the strength with which I pressed the pen to paper.  I wouldn’t have made it through those years without pouring thoughts on paper.

Now I rarely stay up past ten at night and can’t use a pen or pencil for more than a few minutes at a time, so that pouring out has largely disappeared.

But tonight is a different story.

Tonight I am letting it flow, in lots of ways.

The past few days have been an ongoing assault for me.  Early December reminds me of death, and death reminds me of my mother’s death, and my mother’s death reminds me of all the other deaths, and so it goes with grief.  The more loss you have experienced the more deeply each loss is felt, because they tie themselves to one another in some strange cosmic or cognitive way that none of us fully understands.  But I don’t need to understand it to feel it—deeply.

So, I am in the middle of this grief spurt, of sorts, where feeling anything seems difficult and feeling something means feeling loss and pain.  And of course, that is when I jump on the bandwagon of organizers everywhere and comment about the social problem that plagues my country now: gun control.  (I actually could have chosen from any number of social problems.  I wish that would have been a self-evident choice, but there are too many issues here to not name it specifically.)

And then the judges rule.

And by judges I mean people that are not at all qualified as judges or to make any particular judgments about the issue.  Some of them put out a string of falsehoods.  Some of them accuse me of “name-calling” because I use “stupid/classist/racist” as reasons one might think more guns would be better while simultaneously commenting on the number of shootings in Chicago.  None of them do, or have ever to my knowledge, lived in Chicago, mind you.  I do. In an area where gun violence is a constant. So, I am well aware and educated regarding what may or may not be helpful in ending this violence.  And when I tried to fight back and stand up for my views, I was called a bully and treated like I am being a terrible person, or morally corrupt, or some other form of bad.  Except those things arose after multiple people basically said a whole bunch of stuff about how wrong I am and how dumb my ideas are, and I responded with reasoned arguments and strings of facts.  The idea that I am being mean, or bullying others by stating facts and reasoned arguments is ridiculous. The idea that a bunch of people ganging up on me to say how wrong and dumb and morally bankrupt I am, for expressing factual information about gun violence, seems a lot more like bullying than anything I have EVER done, in my entire existence.

I am, by the way, the opposite of a bully.  I learned how to behave politely in the midst of great struggle and to pretend that my world wasn’t spinning out of control from a young age.  I was the one who was bullied, repeatedly and viciously, by others.  I was crying myself to sleep by age 9 and suicidal by the time I was 18.  I’m not the oppressor, but the oppressed.  I always have been.

I remember a time when my daughter was struggling with asserting herself, and in therapy this was something she was working on.  One day, on the playground, she called a boy a name and told him to leave her alone. That boy had been bullying her for months on end, and she finally stood up to him, and she was sent to the principal and I was called to come get her because she refused to follow a teacher’s instruction to apologize.  When I picked her up, I got angry with the principal, and said she most certainly would not be apologizing, and that we had been working all year to get her to voice her frustration and stand up to this bully.  This was a moment of triumph, not a moment of failure, for a timid girl who always ended up under the sole of someone else’s boot.

She learned that by watching me.

There are things you don’t mean to teach your children.  They are a part of you, so they become a part of them.  I always bent to the will of others.  I always hid the secrets.  I always played the part.  I tried and tried and tried to be the perfect daughter, and I failed.  Because perfection isn’t actually a thing. Nobody is perfect, we say, but then we try to force people to be exactly that, and we strive for exactly that. It makes no sense.  I taught my daughter to play the part too, and to not ruffle too many feathers and to not rock the boat, and I didn’t intend to, but she was subject to the same consequences I had been—being abused and manipulated and taken advantage of by others.

So, here is how I know I am not the bully.  I can’t be that.  I never learned how, and I am still trying to learn how.  Every week in therapy we talk about how I deserve to be happy and I don’t need to care what others think and I don’t have to live up to any expectations and I get to choose whom I wish to be.  Every week.  I don’t know how to be a bully.  But I am learning to voice my opinion and not back down and say things without sugar-coating every single word.  And that is met with all sorts of opposition.

It occurs to me tonight, after enduring days of negative comments about me and my thoughts and my action and my words and my ideas and probably the size of my ass, when you get right down to all the comments I have heard in the past week or so, that maybe those other people—the ones making me out to be the bully–are actually the bullies themselves.  Maybe they are so accustomed to people telling them what they want to hear, and to me being polite and diplomatic, that they lash out the moment that is taken from them.  Or, perhaps the converse is true, and those people are the ones being abused by others, and my insistence on maintaining my views without any pandering or trying to be perfect opens up a view to their own insecurities.  I’ll probably never know (especially because I unfriended most of them on Facebook, and I don’t think they have any other way to contact me).

It doesn’t really matter why they reacted in the way they did.  It doesn’t even matter if how I was speaking made them think I might be a bully.  Because the thing I can see, even in the midst of much pain and loss, is that I am not the kind of person they described, even at my worst.  Anyone who knows me well knows this to be true.  My good friends have watched me in the darkest and worst moments, and they know that I am love to the core, and that frustration only comes with pain, hunger, exhaustion, or injustice.  It doesn’t live in my core, but it assaults me from without.  I have the best of intentions, and the kindness of a saint, and love enough to pass it on to even the most desperate and marginalized among us.  Hugging homeless prostitutes isn’t something that you do when you are a bully, or morally corrupt, or without character.  That depth of love and understanding and that level of acceptance is a rare gift, and I am one of those blessed with that rare gift.  And I don’t need someone else to tell me this.  I know who I am.

Even though pain is all I feel and struggle is all I can seem to find these days, I know who I am.  I am not what those people who haven’t seen me for the last 7 to 20 years believe me to be.

Even when the pain is all I feel, I am still looking inside for my value and my worth, not to the outside.  I am finding the voice within and letting it out.  I am the girl on the playground who is fighting back with her words against an onslaught of injustice and being called to the principal’s office for doing so.  And that is fabulous and amazing and good.  That is a triumph!

I know that few to none of my friends throughout the years struggle from C-PTSD, so I understand that they don’t get how important it is to find value in yourself and to let go of the expectations of another and to stand on your own, even if the other doesn’t appreciate you doing so.  But it is extremely important.  Earth-shatteringly important.

The PTSD mind is a mind divided, and often accompanied by a confusion or a lack of knowing the self.  You can’t always—or maybe ever, in the beginning—trust what you feel to be yours and to be true.  Those core beliefs that you have held for your whole life are false, and it takes so much work to root them out, recognize them, and respond in ways that help to break those down.  To find your worth and to let go of shame and to release anger and to love yourself are nearly impossible.

I’m doing those things.  In the face of all sorts of criticism, I am holding on to me, and letting myself feel what I feel and believe what I believe and stand up for both.

When the pain is all you feel, it is really hard to have breakthrough moments like this, or to find your footing at all.  Today I am stomping with confidence, not just finding my footing.  And if other people felt on the bottom of my boot sole, I suppose that saddens me a bit, but not enough to let up right now.  Because I didn’t actually do any intentional harm to anyone, but others did do intentional harm to me.

Earlier this evening I posted that you cannot offer violence and expect peace in return.  This is how I feel about my whole life, not just the past couple of days of comments.  I was offered year upon year upon year of violence, and it is a wonder and a joy to know that I was not so damaged by that to deliberately harm others, or to deliberately harm myself, or to end my life, or to lose my mind completely.  I was repeatedly offered violence, and ninety-nine of a hundred times, I respond with peace.  That is a lot of peace, under the circumstances.

I am not a bully.  Even when the pain is all that is.

So, I end the night and begin the morning having peace within once more.  The assault of depression might linger for some time, or it might lift in a matter of days or weeks.  Eventually I will find ways to feel joy again.  I know, because I do it time and again.  I always will.  But, I rest in the knowledge that my strength is being found and held and kept against that which would seek to define me against my will.  I am still me, even when me is a pile of grief and loss.  And I will keep on being such, no matter who opposes me.

And it is a triumph.

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).