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.

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Flow

I read an article today that posited that financial blocks are indicative of creative blocks.  So, I thought it probably wouldn’t hurt to try to write a bit—maybe suddenly money will arrive if I put my creative mind to some creative writing.

But moments later, I realized that where my creative blocks are might not be here on this page.  Putting pen to paper (or fingers to keyboard, more aptly expressed) has never been hard for me.  I’m pretty sure that I wanted to be a writer from around 2nd grade.  I didn’t fully know that writing was my passion just a few years after, and it took me about 35 more years to get back to that passion, but I did want it at a young age.  I won’t go into the upsetting details about why I lost that focus, because even I am tired of hearing about the wounds of my history.  What I will say, is that at some point in my development—or maybe many small, important moments in my development—I had that passion pushed out of my mind.  I lost that knowing.

Understand that some of that loss was due to trauma.  You forget who you were before the trauma, they say.  I suppose I believe them.  I formed very little of my personality before I forgot it, so I didn’t have all that much to grasp at and hold onto.  But I know that I loved to do things that were artistic and creative.

I remember dancing.  Always dancing.  I remember singing.  Always singing.  I remember writing stories and poems and making picture books.  I remember sitting in the art room during recess on any occasion I was allowed to do so, and working on a painting or some clay dish.

Unfortunately, I also remember being judged.  And I remember coming up short.

Competition is a thing I hate.  Ask my brother-in-law, the lover of board games, and he will tell you that I am no fun because I never want to play.  That isn’t entirely true.  There are cooperative games that I really like to play, and there are particular groups of people with whom I like to play such games.  What I don’t like, is the measuring stick and the terms “winner” and “loser”.  There are a lot of people who won’t understand that I hate these things.  They might say I am a sore loser, or that I am just not as good a player, or that I identify too closely with the millennials who all get trophies and don’t know how to lose.

None of those are true.

I don’t like the way that certain people judge others, and I don’t like the way the worst comes out in people when competition is put into play.  Hehe.  Pun.

Seriously though…

I remember not having the best picture book in whatever grade that competition took place.  I remember not having the best art piece on any of the occasions.  I remember that my words weren’t honored and placed on walls with gold stars or blue ribbons.  And it isn’t that I am upset that I didn’t win—although as a child that may have been partly the case.  What bothers me about this system of measurement that was constantly reinforced, is that I was really, exceptionally gifted in all sorts of creative arts, but I never won the contests, so I thought that I was bad at what I loved most in life—to paint, and to sing, and to dance, and to write.

Around my junior and senior year of high school, I finally started to understand that the games and the contests weren’t the true measure of skill.  And at that point, I wanted to invest my time and my energy into learning to hone those skills that I somehow, inherently, had in the creative arts.  I said that I wanted to take a photography course, but I wasn’t allowed, because I hadn’t taken Art I and Art II and whatever other requisite courses one needed to pursue an art course.  But I didn’t want to paint fruit on platters, or learn how to shade well in my pencil sketches.  I wanted to take photos.  I wanted to be a photographer.  I found beauty in spaces where many could not, and I feel that I would have been skilled at photographing that beauty, and showing it to the world.  I wasn’t allowed.

I started to dance when I made the dance team in my first year of college.  I don’t know why I believed during this period that I could do things I was never allowed the chance to do when I was younger.  But I tried out, and I made it.  I was ecstatic, and it was amazing.  But the following year, the team that danced at half-time wasn’t a thing, and instead there would be a series of showcases.  The ballet jumps and the spotting during turns wasn’t something that anyone ever taught me.  I never had access to lessons.  I fell in front of all the people trying out, and I felt like the previous year—when I did an amazing job dancing my heart out in front of people—didn’t even exist anymore.  I wasn’t a real dancer.  I didn’t make the cut.

All of these moments—these competitive moments, when I was meant to prove my salt and come out on top—instead turned into a huge lie and a core belief that I held for many, many years.  I wasn’t an artist.  I wasn’t good enough to be on stage acting.  I didn’t even make the annual theater performance program when my own father directed the show.  He said he couldn’t cast both his children, or it would seem like favoritism, and it was The Music Man, so he needed my brother more than me in the cast—boys who love to dance and sing on stage weren’t quite so popular and accepted thirty years ago in small-town, rural America, I suppose.  But, even if he did wish to cast me, he didn’t.  Which made me feel like all those other girls were the talented and pretty and deserving girls.  Which meant that I was not.

I don’t know why competition is a thing.  I don’t know where it started.  I don’t think it ever ends.  But I do know that constantly falling just short of the cut, and not winning the praise and validation, made me stop working in the fields that I loved.  I stopped singing.  I stopped dancing.  I stopped playing the piano.  I stopped drawing.  I stopped painting.

Or, at least, I stopped doing them in public, or anywhere that other people got to judge my work and my skill in any way.  I couldn’t stop doing them altogether.  They are part of who I was meant to be.  I was always, as my little girl self felt, a writer.  I was always an artist.

And shame on each and every person who made me believe that couldn’t be true.  I had a love of the arts.  That alone was enough to qualify me and to give me permission to pursue a life and a career in the arts.

The blocks—the places where my creative energy doesn’t flow—are the doors that I closed on the dancer, the painter, the photographer, the writer, the poet.  The blocks come each time I feel like dancing, but don’t.  The blocks come when I am passionately pounding out a deep and layered piece on the piano, and I hear the garage door next to the music room open, so I quickly stop, put things in order, and rush upstairs so that nobody will know that I was playing—usually weeping as I do, because the piano has a language that can express my despair, my pain, my joy, and there is no other language I know that can do the same.  The blocks come when I look at something I have created, and deem it unsatisfactory, honing in on every possible perceived flaw, even while others are gushing awe and praise for that creation.

The blocks are there because I stopped believing I could be an artist, somewhere between the 2nd grade and today.

I don’t know if letting my creative expression flow will make my bank account attract the funds to pay the electric bill and get me some groceries.  But I do know that letting it flow will do other things that are good and necessary for me now.  I need to trust in my abilities.  I need to believe that what I love matters.  I need to know that no matter what anyone else thinks of my expression, it is valid, and it deserves to have a space in my life and in the world.  My creative side isn’t here to make certain I have scrapbooking group opportunities where I can find respite from caring for the kids.  (Though that is totally a worthy cause, people!  Scrapbook away! No judgment.  I suck at scrapbooking.  Which is kinda ironic, since most of my art is collage work of some sort, so I should be awesome at layering paper.)  I digress.  The point is that we love things because we need them and they need us.  My creative side is here to flow—to pour out upon the earth and to exist there.  And maybe your creativity is in the solving of difficult equations or positing really awesome stuff to prove and disprove using science or setting an amazing buffet before a crowd of people.  It doesn’t need to mean “the arts” for all of us.  But it should be recognized and validated and praised for all of us.

It is hard to put your heart out into the world and have people step on it.  And I don’t think that needs to happen.  Maybe everybody doesn’t get a trophy every time, so the kids still learn that life has ups and downs, and we don’t always get what we want.  But maybe everybody can be recognized, encouraged, and praised for showing up and trying, or for improving, or even for quitting!  When my daughter quit basketball or piano or French class or school, I praised her for knowing what she loved and what she didn’t love, and I praised her for trying, even if it wasn’t the right fit and the thing she wanted to continue to pursue.  And I helped her find the right fit, whenever possible.  (I still owe her a violin, by the way, because that was the right fit, but I couldn’t afford that fit and promised she would get one “someday”.)

I think that letting what naturally flows out from our hearts is usually beautiful.  Even when it is messy and complicated and not perfect, I still think what flows naturally is beautiful.  I’m in the minority with this view, I know.  Most of the people I know consider humanity flawed or cursed or sinful, and we just keep striving to be not that or better than that for a lifetime.  I don’t see it that way.  I think that humanity is stifled and broken and cut off from the beauty that naturally flows by competitions and bigotries and selfish motives that we learn over time.

Think about what you wanted to be when you were a child.  A fireman?  Superman?  A doctor? A mom?  Not many of us would have said “a ruthless investment banker who works himself or herself to death”.  But some of us turn out to be just that.

So, what if our earliest notions of self are actually the purest, but society convinces us that they are not, by pitting us against one another, and telling us that some of us win and some of us lose?

That thinking is very evident in recent weeks.  I’ve literally had people say to me that I am the loser in the game of healthcare. And what I lose is my health and possibly my life.  (Can I at least get a fucking participation trophy before I die, asshole?!)  The idea that some of us win and some of us lose, and that we don’t need to change that because it is the natural order, is one that devastates many, and allows us to harm others without conscience.  That is a terrible idea to foster and encourage!

So why can’t we do that opposite?

What is the worst that could happen, if we encouraged all the kids to dance?  What is the worst that could happen if the world had 80 million firefighters?  What is the worst that could happen if all the 2nd graders were acknowledged for something they loved?

Today, I’m thinking that we should all just let our creativity flow—whatever that means for us.  I would love to see rivers of creating in the streets, and not rivers of blood caused by all sorts of violence.  I would also love money to be attracted to me, and have cash flow mimic that creative flow, but that is a secondary goal.

So, tonight, despite my aching joints and without having the results of my lumbar spine MRI to diagnose a reason not to, I am going to dance.  And should a piano find a way up my stairs, I might pound on that passionately, even if my family members could hear.  And I will likely put my newly cleaned studio to use one day soon and layer some non-scrapbook related paper together to create some art.

Because writing this has definitely helped—even if my bank balance stays the same.  It has helped me to see and understand those blocks, and to begin on a path that removes them.  It has helped me to once again claim the title.  I am an artist!

The Song that Never Ends

I feel like shit.

I could probably end there, and just let that be my post for the day.

But I keep putting “write” on the schedule that I don’t follow.  I’d kind of like to cross that off my list.

So, I feel like shit.

And that isn’t a new thing at all.  Which is why the song that never ends seemed appropriate as a title for this post.  I say this all the time, because I feel this all the time.

Last week I was diagnosed with bronchitis.  It is a blow to the body and to the psyche to have bronchitis.  I’m getting to the point where I think that living in a bubble might be preferable to being exposed to the outside world.  And by outside world, I don’t just mean dirty places or contagious people, but literally all of the world outside my apartment.

Environmental allergies.

Dust and mold, for starters.

I’ve been treated every which way—including the much debated and often frowned upon NAET treatments that a person desperate to stop being sick will try–because that person would try almost anything to stop reacting to things and becoming violently ill.

And bronchitis is violent.

My whole body aches from the depth of the cough, which makes the muscles that you never think about or concern yourself with spasm and become pained and fatigued.  There are times that I end up on the floor after a particularly brutal coughing fit.  I double over, hoping that somehow that will reduce the struggle and help me find air.  I’m not sure that it helps.  But I am sure that it seems like the only action one can take to combat the effects of the onslaught.  Double over and gasp for air—it seems the only natural resistance.

I don’t intend to whine about my situation here.  It comes out that way at times.  And some days I do wish for the slightest validation of my suffering, because it deserves to be recognized.  I deserve to be recognized.  But today is not one of those days.

Today is simply the day that I keep saying what I am always saying—that I feel like shit.

If you know me well, you have been around that feeling for a long time now.  If you don’t know me well, you still have easy access to the information.  It is obvious from what I say and do and write that I am suffering more often than I am not.

And I think that it must get really boring and annoying and redundant and frustrating to hear me complain time after time that I feel like shit.  It must be tiring.  It must suck.

It is a really stupid thing to feel, but I feel guilty for being sick.  I feel guilty for burdening others.  I feel guilty for not showing up and not participating.  I feel guilty for going along and placing limits on what we can or cannot do while we are out.  I feel guilty for offering the truth of my situation as a part of our conversation.  I feel guilty for having nothing more fabulous and exciting to discuss.  I feel guilty as I see the eyes of those across the table shift from attentive to numb and indifferent while I explain my newest challenge, or offer details of my situation.

I get it.

It is the song that never ends.

I always talk about sickness and disability and poverty and medical care and socio-economic patterns and the evils of capitalism and the failures of our systems.  And most of that is hard to hear, and even harder to want to engage with any sort of energy.  Because it sucks.

There are not a lot of people I know who feel that they are in a place where they will always remain.  I don’t mean a physical space, necessarily, but a situation that they will never have an opportunity to change.

Most of us—most of you—get to change at will.  Change careers.  Change partners.  Change clothes.  Change perspective.  Change schedules.  Change environments.

And that change might not always be easy, but it is possible.

My never-ending song/story is such because the possibility of change at will has been stripped away.

You want to believe that isn’t the case.  You want to argue that I can still make choices.  And I can still make choices; but I never get to make a choice that isn’t influenced by my disabilities.  Everything revolves around that illness.  Each step that I take considers that, first and foremost.  It dictates all the things, all the time.

I feel like shit.  And that determines everything else about my day, my week, my month, and my life.  A bad day can quickly avalanche its way into a bad year.  It is even determining the words that I type right now.  I keep thinking that I am no longer making sense, and that I have lost the point that I was seeking to make.  I don’t feel well enough to concentrate.  My chest hurts.  I can’t breathe.  My hands are shaking.  I’m queasy and light-headed.  My stomach has that flu-like feeling that can only be described as “yucky”.  My toes are suffering what feels like being stabbed.  My head feels full of cotton and not brain matter.

And I am not going to stop feeling like this.

I will stop feeling it for a while.  It won’t always be this bad.  But it will always be.

I will always be at risk, afraid of the environment and its effects on me, feel guilt about the social implications of my illness, suffer the pain and frustration and challenge of my disability, struggle to find the words to express my life story without making it sound pathetic and desperate and sad, and waiting for the next time I feel like shit.

Yes, this song doesn’t end.  Yes, I will always be talking about my physical and mental health.  Yes, I will always have bad days.  Yes, I will always share my experience with honesty, and show the bad alongside the good.

Today there isn’t a whole lot of good.  Today is mostly bad.

But to be in my life, you need to be okay with a life that is mostly bad.  You need to let this song be sung, and maybe even sing along.  You need to accept my disability and disease as a part of who I am and what I am and where I am.  And you need to know that will never change.  If you can’t handle that, then you don’t belong in my life.

That sounds harsh, I know.  But my life is harsh.  And I need to be honest about that.

I’ve recently said that I will no longer keep the secrets of others, to my detriment.  And part of letting those secrets be freed is accepting that there is a lot of pain and suffering that will also be unleashed.  So, the bad days might increase.

I’ve opened the box, Pandora.  And the chaos that comes out isn’t something that can be controlled.  I can’t plan for the ways that affects my person, my situation, my family, my friends, or my life.  I can only wade through the waters, not stop the flood.

“Will I lose my dignity? Will someone care?  Will I wake tomorrow, from this nightmare?”

A line from a song in the musical RENT seems to echo what I am currently feeling.  But the last question has already been answered for me, and for the characters in the show.  We won’t wake from the nightmare.  The bad stuff—the feeling like shit—is still going to be here tomorrow and the next day, and the next.

But the question of my dignity and the question of the others who may or may not care remain.

Can you love a person who is always “deficient” in some way?  Can you care about someone who has no foreseeable economic gains?  Can you respect someone who doesn’t have a “normal”, professional career?  Can you accept a friend or partner who has obvious limitations?  Can you live in the space where the never-ending song plays on?

I must live in that space.  I don’t have an option.  I can’t leave my limits and challenges behind.  They come on the journey.  They stay packed in my baggage and carried along.  They are a part of my life—a part of me.  So, when the never-ending statement, “I feel like shit”, comes along, how will you address it?  How can you best interact with it?  How can you cope?

You can do as I do.  You can honor and validate and give heed to the struggle.  And by so doing, you offer grace and peace and confidence and trust and understanding that transforms.  The song will still be the same, but it is made more beautiful by the harmonies of a choir.

Joining in the honest acknowledgment of my limitations, and knowing that they are not the whole of me, but a valid and important part changes the score.

It transforms pain into beauty.

It makes beautiful music.

 

Sleepwalker

I once, according to my dad’s telling of the tale, came downstairs from my room, obtained a jar of jam from the refrigerator, took a spoon from the silverware drawer, and started to eat jam directly from the jar.  When Dad questioned me, and asked what I was doing, I became defensive.  Whatever was happening in my head, it was determined that jam eating in the wee hours was normal and not an offense of any kind.

And that is a fun little anecdote regarding the sleepwalking of my childhood.

There are many.

My dad also tells tales of other sorts of sleep disorder, however—sleep terrors and nightmares.

Sleepwalking is rare.  Estimates place the percentage of the population that completes complex action while asleep around 1 to 15.  The phenomenon is a sleep disorder, and it is usually associated with either sleep deprivation, stress, or both.  The combination of this disorder with those of nightmares and terrors is even more rare.  It is hard to say how many people might suffer from all three, because the one experiencing the events often has no recall of the events.

In the past few years, I started to sleepwalk again.  While I have no recall of the events, I have evidences of the events.  One morning, bread was laid out on the kitchen island, as though I were preparing to make a sandwich.  Another morning, I woke to toasted bread, still sitting in the toaster but stale and cold.  On yet another occasion, I woke to near-freezing temperatures and realized that I had turned the thermostat all the way down as I slept.

It wasn’t until I mentioned these events to my sleep specialist that I started to understand the presence of sleep disorders is directly related to stress.   And in my case, that stress is related to a loss of bodily autonomy through chronic sexual abuse and medical testing and treatment for bladder and kidney issues.  Usually adult sleepwalking is tied to and triggered by childhood stressors.  My sleepwalking (along with incontinence and suicidal thoughts) returned shortly after a visit from my brother, and repeated arguments that took place during that time.  The insistence that I do as he believed I should, and the lack of respect for me and my autonomy that such insistence belied, threw me right back into that childhood self with symptoms of extreme stress.

Getting along with my brother is an impossible task.  He wounded me in ways that can possibly (I hope) be forgiven, but can never be forgotten.  He created a vacuum in my life that sucked in all sorts of damage, abuse, and pain.  And while some would argue that the “victim card” isn’t a thing that I get to “play”, the fact is that I am a victim of horrible abuse that does not stop affecting me.  And having a perpetrator of abuses in my physical space, and having that perpetrator tell me what to do, is an impossible to ignore affront, whether it is meant to be or not.

People talk about “finding their inner child”, like it is a fun and freeing thing.  But my inner child is terrified, wounded, confused, and under mind-altering levels of stress.  I don’t want to find that—ever.  But I don’t get a choice, because that child finds me on a regular basis.  She returned in a blink of an eye after that visit with my brother.  And she didn’t leave.

I began sleepwalking again because that child started running the show while I slept—the early expression of my post-traumatic stress coming back into my experience.  This is often the case with sleepwalkers.  If we do it as adults, we likely also did it as children.

I don’t know that I eat jam from the jar in my sleep anymore.  But I am definitely exhibiting the stress that I did in childhood within the circadian patterns that I currently experience.

The nightmares I can make go away.

I didn’t know that was possible until a few years ago, when the nightmares were increasing, and the trauma of the past was leaching from me and leaving a trail of symptoms across my life.  It was at that point that I was finally properly diagnosed with C-PTSD.  And that diagnosis brought the beloved off-label use of blood pressure medication which stops the nightmares.  Or, to be more succinct, it stops me from engaging with the nightmares or remembering the nightmares.

Minipress, or prazosin, as a treatment for PTSD, was discovered incidentally by a Dr. Simon Kung at the Mayo Clinic in Rochester, MN.  The medication had been around for decades, but it was not noted as an effective treatment for nightmares due to PTSD until 2012.  Thankfully, I receive medical care at a teaching hospital that uses cutting-edge treatments, and I started on prazosin mere weeks after my diagnosis. My brain can still engage with flashbacks and nightmares, but my body is prevented from interacting with that engagement, and I remain asleep and unaffected by the subconscious terror.  It still amazes me that this is possible, after having interacted with this terror for over 30 years.  I am in awe that we can simply shut off that terror during the night.  And I am extremely grateful for Dr. Simon Kung’s work to find, study, and disseminate the knowledge that I, and many others who suffer PTSD symptoms, can experience peaceful sleep.

While the medication doesn’t prevent me from sleepwalking, it makes my sleep much more consistent and much less traumatizing.  Having sleep, the restorative and balancing action your body requires, become a source of fear is a terrible thing.  And being able to participate in and enjoy sleep is nothing short of miraculous for my beleaguered and exhausted self.

I feel like this turned into a term paper, and not a blog post.  But it is important, apparently, for me to recognize and report about the challenge of suffering symptoms of stress and trauma during the night … and to present alternatives.

Because, as someone recently told me, people need to hear my stories.  And I am committed to the telling not just because I think it might assist others, but because speaking truth is freeing.  Expressing the challenge and the need and the struggle and the fight and the overcoming of obstacles and the strength and joy and relief of that overcoming is important.  It is such because my voice is my only chance at regaining the autonomy lost as a child.  My voice is the only thing that can offer that child some peace and restoration.  That young self, and my triggered adult self, both need to know and feel and trust that there is a path to good, and that we can walk that path and find that end.

I might make sandwiches or eat jam from the jar in the night for the rest of my life.  I might, just as easily, find the release of stress that I need to stop that sleepwalking from happening any longer.  And it is necessary for others to see this hidden-by-the-dark experience, and to validate that experience.

Because while I don’t fault those in my life for not knowing that I was expressing in my quirky sleepwalking moments the grave burdens of an abused child.  The science wasn’t there.  The advocacy wasn’t there.  The skilled psychiatric specialists were not there.  The only thing that my dad could see was a girl doing weird things—expressing the inexpressible in the ways that my subconscious self could.  And it couldn’t express it well enough, or loudly enough, or clearly enough to spare me the trauma … but at least I tried to express it in some way.

I can express it now.  I’m determined to express it now.

I’m determined to give that child a voice that can be heard, understood, and validated.  I’m determined to let her speak, to cry, to scream out the things that her jam-eating, sleepwalking, nightmare-having self couldn’t quite manage to express.

That little girl experienced chronic, escalating, sexual abuse.  That little girl also had doctors and nurses poking around in her most sensitive and sacred parts without any sort of trauma-informed care.  That little girl was lost in a sea of pain, and she nearly drowned in those deep and dark waters, as the waves beat her and threw her against the rocks.  That little girl needed to say that she was dying from the weight of trauma and shame and conflict and fear and confusion laid upon her tiny chest—crushing her ribs, puncturing her lungs, and making it impossible to breathe.

That little girl also needed others to hear her and to offer validation and to acknowledge the injustice and offer hope and comfort and help.  She still needs that.

I try to offer it to her.  But it is hard to trust just one voice (especially when so many deceptions have been spoken in your experience).  It is hard to assure her that she deserved safety and autonomy and privacy and justice and good.

It is hard to assure my adult self—this grown-up version of that girl—that she deserves safety and autonomy and privacy and justice and good.  It is hard to believe that my voice can make a difference.  It is hard to believe that I am heard.  It is hard to find validation.  It is hard to find hope and peace.

But that little girl fought hard to survive.

And I am going to keep fighting her fight.

This Is About That

The other night, I was watching the latest episode of How to Get Away with Murder.  And I won’t let loose any spoilers, because only asshats let loose spoilers from the best and most intense cliff-hanging shows.  (I’m looking at you, people on the train loudly discussing plots and outcomes that we financially challenged people cannot have experienced yet, because the movie hasn’t come out in the more accessible VUDU app format.)

But, spoilers and asshats aside, a character on the show the other night pointed out that childhood trauma was responsible for her pain and her questionable behavior.  And I cheered aloud and then began to cry.  Because Shonda Rhimes had brought me the validation that is so often missing from the recovery process when one is harmed as a child.  She brought me the truth that today is still about yesterday for those of us stuck in trauma.  She brought that truth to a huge viewing audience.

This is about that.

There are lots of people who misunderstand that way that trauma affects us.  And much of the misunderstanding is due to the fact that we want to avoid trauma like the plague.  We don’t like to feel it, or see it, or cope with it.  We just don’t like the messy and unsolvable and uncontrolled parts of life, and trauma, especially childhood trauma, is the epitome of unsolvable, uncontrolled mess.

I don’t have the luxury of avoiding that mess.  That mess is a part of my brain, and not just in the way that a habit is ingrained, but in the sense that my brain was physiologically and chemically affected by childhood trauma, resulting in post-traumatic stress disorder.  And PTSD throws that trauma in your face constantly.  It isn’t a matter of “letting go”, or “getting over it”.  It is a matter of brain formation and function that is far outside my control.

So, when Ms. Keating offered the idea that her present was infiltrated by her past trauma, I related with that.  I related with that HARD.

And then I was disappointed with the next character’s reply.  Even though I know that his reaction is a common one, it seemed to invalidate the pain of the present being tied to the past.  But it is.  It absolutely is.

This is about that.

I would guess that the number of people who have told me that my choices are responsible for the situation I am in (regardless of what that situation was or what choices I had made) is in the hundreds.  And the number of people who likely think but do not say that my choices are responsible for the situation I am in is probably in the thousands.

Those people are wrong.

This is the point where I would like to add that you should READ TO THE END BEFORE POSTING RAGE-INDUCED COMMENTS.

Those people are wrong because my present challenges are not simply a product of my choices, and because trauma has informed my situation for almost forty years.  And it still does.

Here’s the thing:  Your past informs your present.  It simply does.  There are numerous things outside of your control that may have shaped your life to date.  You were born in a particular place, and in a particular time.  Your parents, or lack thereof, shaped the way you viewed the world in your early years.  Your access to education determined much.  Your family finances determined much.  Your skin color, and the resulting prejudice or privilege, determined much.  And trying to pretend or argue away that influence is a futile thing—because we might not be tabula rasa, but we are definitely affected by the things that make up our early years, and we carry some of that with us always.

Now, having pointed to the ways that we all carry our past, I would like to return our attention to my own situation.  My situation is not the result of my choices alone.  My situation is the sum of many parts, but the most influential parts were the traumatic parts.  And my choices—the way that I interacted with the world—were influenced by that trauma.  This is about that. My present is informed by my past.  And every decision has been one made under duress, because of that lingering trauma.

Trauma, untreated, compounds and builds and becomes more and more traumatic.  Imagine you fall, and in doing so break a rib.  It hurts, but you don’t go in to the doctor for treatment, because you don’t see an external injury.  You walk about for a few days, with that pain still lingering, and then one day, while lifting something heavy, that broken bone shifts and punctures your lung.  Untreated trauma, even in a strictly physical sense, can lead to greater trauma.

My childhood trauma informed how I saw the world, how I saw myself, how I viewed trust and love and care and communication.  And that information was skewed in such devastating ways, that every interaction, for the rest of my life was affected by that trauma.  My drug use, my chronic illness, my romantic partners, my earning potential, my friends, my jail time, my parenting style, my sleep cycles—all directly related to the trauma that I suffered in childhood.  And each resulting “mistake” or misstep based on that history created another skewed belief about myself and the world around me.

It still happens today.  Even with proper diagnosis, medication, and weekly therapy sessions, I still make choices based on that trauma all the time.  Because you can’t just wiggle your nose and create a new narrative.  It takes long, hard, painful work to even face the narrative that is mine, much less to create a new one in its place.

Today is about yesterday.  This is about that.  Trauma compounded makes my life a series of traumas, and that is absolutely not my fault.

Yep.  I’m saying it.  NOT MY FAULT.

My choices didn’t put me here, because they were based on a bullshit narrative.  The narrative started with the trauma.  It is the foundation of my entire life.  Annalise Keating, the character who expressed the truth on the show, and I share this foundation.  This is about that.  When your life is built upon a foundation of pain and confusion and denial and abandonment and fear, you cannot make all the “right” choices.  When your life is built upon love and trust and needs that are met, you can make decisions in a different manner than Annalise and I can.  But we don’t have that to build upon.  And building a life of love and trust and “enough” upon the foundation of pain and confusion and denial and abandonment and fear is an almost impossible task.

I’ve found that digging deep into my history and rooting out the beliefs that a small girl formed based on trauma is a strategy that works to help me move forward in healthier and better ways.  But that process takes many years, and much effort.  There are days when I jump in the ring and fight for my own narrative and my agency and my autonomy—building a more positive framework for my future by addressing that negative framework of my past.  There are days when I cannot find enough energy to fight, and days when parts of my brain take over and make decisions for me and follow rote patterns while I dissociate from pain or fear or some other thing that I don’t want to feel.  There are days when I make informed decisions based in new systems of belief.  There are days when I still believe all the core statements that a broken little girl formed in the midst of a shit experience.

Regardless of the way I connect and interact and act on each of these days, there is always the lingering trauma.  Either I am working at coping with it, or I am being overtaken and ruled by it, but the trauma is always informing my day, my choice, my life.

This is about that.

It has always been about that.  It may always be about that.  I don’t know if the work that I am doing to cope will ever stop being such hard work.  I know that I am developing coping strategies, and learning to frame life in more positive ways at times, and seeking to understand and address the disconnect inside my own mind—reintegrating my brain and finding greater wholeness. But I do not know that my altered brain will ever be free of the influence of previous, and especially childhood, trauma.

There is no cure for PTSD.  There is only coping.  And while I keep working toward coping, there are lots of ways that my finances and my health issues and the area I live in and the things I own and the way I approach relationships are already saturated with trauma, and wringing out all of that history and pouring in something better is not going to be possible if there isn’t more hope and more support and more money and more security and more safety at some point.  If there isn’t more good to replace the bad, then I just keep spinning around in a horrible life cycle of trauma repeating and compounding and reinjuring.

So, what is the point of this post?  I’m not entirely certain.  I suppose it is to voice what was voiced and challenged in the television show:  this is about that, and pain, unchecked and without validation and the pursuit of justice, brings more pain and more pain and more pain.

What can solve this problem?  Validation and the pursuit of justice.  Those are the only things that start to wring out the trauma and fill up the broken with hope and love and trust.  Believing, addressing, listening, validating, and seeking to end the pain for another, instead of running from trauma like you are being chased by a wildcat can solve the problem.  Offering peace to replace pain, offering loyalty to replace betrayal, offering encouragement to replace harsh words, offering truth to replace lies, offering things and funds to replace need and poverty, and offering support to replace abandonment can solve the problem.  They can’t solve it immediately, or easily, or even without any new or recurring trauma, but they can add to the work that the victim of trauma is doing, and help to create a better narrative, new core beliefs, and a perspective of blessing and kindness and good.  And that is a significant contribution.

This is about that.

I didn’t make my bed and need to lie in it.  The place where I lie, or stand, or sit, or walk, was made by a series of traumatic experiences that were not my fault, and I don’t need to remain there.  With the help of others, instead of the flippant judgments and imagined superiority that are often the normative response to those who experience trauma, I might be able to find a better place to lie, and make a bed that is comfortable, warm, and filled with love and kindness, instead of the one that I was thrown into by the actions of others.

Because this is about that.  My present struggles have been caused by the trauma of my past.  And admitting that, appreciating that, and addressing that with actions that change the narrative and offer a positive perspective are necessary for my situation to change.

I’m not alone in this.  Millions of people are suffering in the same way—living lives that are informed by and built on the failing foundations of trauma.  And it is time that those of us not fighting against that trauma stopped adding to the weight of that trauma, and started to support those who are working so hard to overcome the past and find better futures. Become part of the solution, and stop compounding the problem.  Believe a survivor.  Support a person in need.  Fight for justice, even when that justice doesn’t serve you personally.  End the stigma.  Ease the pain.

Because this is about that.

Happy New Year

As the New Year rolls in, I am in my party dress, sipping a cocktail, and typing at my desk.

I suppose I knew at the start of the evening that this would be its conclusion, but I always hope for an outcome that isn’t me alone with my keyboard and my liquor.

That hope is frequently disappointed.

But I’m not entirely upset or unhappy about this moment. In fact, I kind of like it. Alone with my thoughts and my memories and my moment, I am really very happy.

This has been one of the most difficult years of my life. And if you know much about my life, that is saying much…much that is not good. I have been delving into my history and rooting out the damaged parts of my psyche and fighting a losing battle for health and for employment that pays actual money. I have been struggling with the letting go process that the verge of empty-nesting offers me. I’m really accustomed to grief, but somehow the thought of losing one’s daughter to the world is a type of loss unlike others. Which I suppose gives me the slightest bit of empathy for my own mother. And I have, speaking of my mother, been watching her decline into Alzheimer’s, and watching my dad mourn her situation and struggle through the days as a result.

I have been beaten and battered by life at many stages and in many ways, but this year has been the most psychologically difficult for me. But, in many ways, I am glad that it has been.

You see, I’m a stubborn and independent sort of soul. I like walking through fire, more often than not. I’m not afraid of life. I fight at it. But this year stopped me in my tracks. This year was too much to bear and too much to fight through. And that was a fabulous thing, because breaking under the weight of life forced me to find better ways of reinforcing the beams of my mind and heart and body. I have always made it through things by sheer force of will. But that is not the healthiest way to make it through.

In my defense, I began learning coping skills before I even managed puberty, so I wasn’t really in a position to assess the healthiest ways to make it through…your mind and body sort of do whatever they must to survive at times. And for that I am eternally grateful. But those early skills, while they saved me as a child, are now really unhelpful—even damaging. So, I needed to break in order to build.

They don’t always tell you up front that the building feels the exact same or worse than the breaking for the first six to seventy-two months, however. And while I still feel pain far more often than I feel joy, I feel something. Something to feel is worth a lot after thirty or more years of dissociating and shutting out and avoiding and denying. Feeling feels like so much progress. Feeling in the true sense, where you don’t just emote, but you know why you feel what you feel and you see how it connects to your life and your pain and your joy and your struggle.

So, in previous years…ones where I was alone with my keyboard or my television or my whatever on New Year’s Eve and felt pain…I didn’t really connect to my pain. And this year I can recognize that I wish I weren’t always at home on celebratory holidays, but that I am perfectly and beautifully content watching a movie at home instead of being out as well. And I know that much of that contentment is due to the skills I am learning to help heal the broken parts and allow me to become whole. The more whole I become the more I love being with myself, and don’t need validation from outside sources. (Also, a little of it is knowledge of how awful it is to be trapped on the train with vomiting drunks on my way home at two in the morning.)

Last week I was in my hometown with my family. And it was shocking how quickly I began to seek their approval or tried to fit in with them in some way. On about the third night I broke down and cried and told my daughter, “They will never stop treating me badly. Not ever.” That admission was freeing for me. That I was seeking to be treated as someone else or someone different than whom they wish to remember me as…the role they wish me to remain in…was telling. And the moment when I stopped hoping they would let me change roles or be myself without question or accusation was also telling. It signaled this new way of being in the world. A way that doesn’t require validation.

I don’t need to be told who I am.

I am, regardless of their desire for me to be other. As long as I stop seeking their design for me and follow my own, I have freedom. The moment I wait for them to pigeon-hole me, is the moment I begin to break. I must hold my wholeness, and that means I must hold the plans for who I am and how I am in this world. Mindfulness practices have definitely helped me see that more clearly, but when you are stuck back in your childhood home with your immediate family, it is surprising how quickly you can forget who you are.

So, tonight, having left that situation and having had that realization, I am very happy being me. Being a woman in a party dress with her computer screen and her vodka has never been so satisfying. Because tonight I choose it. It hasn’t been assigned to me or cast upon me or ascribed to my destiny. This moment is mine. Mine alone. And it is beautiful. And I am happy.

Happy New Year!