Wednesday, June 19, 2019

Virtue as Vice

Over the past few months - as I have pursued and received a diagnosis of complex post traumatic stress - and over the past few years - as I have initiated and maintained sobriety - I have thought quite a lot about the nature of forgiveness.

Culturally, notably in Christian culture, forgiveness is perceived as a defining virtue. We ask God for His forgiveness for our mortal failings, and we are charged to forgive others who may have harmed us. And in sobriety, we are encouraged to make amends to others - not exactly to ask for forgiveness, but to offer our most sincere apologies and our intentions to change, and to remain changed. 

I can see the value in that. It makes a lot of sense to me to apologize and to actively strive for personal growth and permanent change. And I can see the virtue in believing in a greater force that accepts us for who we are and who encourages us to do better. I suppose I am a big supporter of saying, "I'm sorry."

But I find that I am not so thrilled about the idea of saying, "I forgive."

Perhaps because the latter is so rarely preceded by the former. 

The constant crush of our cultural cruelty has further encoded this seeming necessity for forgiveness. Victims of violent crime, of oppression, of bigotry, are all carrying the burden of our collective values - when we read about the aftermath of crimes we often read words of forgiveness, as if moving forward from tragedy requires a selfless act from the people who have been harmed the most. 

And I can see, if a survivor's well-being rests on their religion, that forgiveness might be a way forward. If one's comfort is one's god, that god sets the terms. I understand that, though I cannot, for myself, believe it.

But I think we do need to talk about things that are unforgivable, and about people who do not deserve the efforts of those who have been irrevocably damaged. A few examples, though there are many more --

Human beings who are crammed into concentration camps at our border should not ever, ever be asked to understand and excuse the depravity of their captors - to make sense out of intolerable behavior, to have compassion, to grant absolution. 

Victims of hate crimes will receive no apologies, no promises to change. People who are marginalized by the majority are granted no dignity, no humanity, no love - why, then, should they give those considerations to the people who hate them?

Survivors of mass shootings have not only lost friends, colleagues, children, parents, but have lost any sense of security that a just society should guarantee. How can they then turn to the (white, cis, het) men - who are so bitter and broken and desperate and pathetic - and offer a way out? 

When we look at what is really happening, right now, in our country, we have to let go of normative notions of social exchange. And then we need to turn that inward and consider if we, too, have forced ourselves to yield to that force, that drive, to make pain look pretty. Virtuous. Holy. 

Looking in at my traumatic memories, I've realized how much I have felt the need to forgive things that will never be corrected, and to have a self-immolating compassion for the damaged people who have caused me harm. I have, against my own will, submitted. And I'm right on the edge of realizing how incredibly unnecessary that struggle has been. There's been no reason to forgive - to move forward, yes, always, but not to say it was okay.

For survivors, it is so easy to look to others and say, that person had it worse, or, it's not like it was that bad. But that denial of the self is a type of forgiveness, I think, of the people who caused the trauma. Because they could have been worse. Because they didn't do every other bad thing. 

Because we know how other people are broken - we know why certain people behaved the way they did, we know their own hurts, their own traumas. We know about their mother, or father, or family friend, their hunger, their poverty, their helplessness - we know, maybe, that once upon a time, they had it worse. That they were doing "the best they could."

But I look at our culture and I would never, ever, ask anyone else to offer forgiveness. Not for money, not for public perception, not for family, and not for God. Why, then, should I demand it of myself? 

The world isn't making amends. Our national abusers aren't apologizing, aren't making changes. Cruelty and selfishness are, for them, their own rewards. And how many of us have people in our past who will never even attempt to make things right? Why cling to those people, to those scenarios, and hope against hope for true change that will never come?  
 
I am happy to offer forgiveness to the people who say they are sorry. That's the way it should be. And if someone in public life - a community leader, a representative, a politician - changes their views and then enacts change, I support them in full. But neither I nor you should ever bend down to embrace the unchangeable - the irredeemable. That goes for everybody - family, friends, community members, leaders, politicians, police.

Because sometimes our social values are toxic. And we've got to move forward, to stop clinging to our hurts. 

Sometimes we shouldn't say, "I forgive," because we need to say, "Goodbye."

Tuesday, May 21, 2019

Drawing the Line

This is going to be one of those painfully honest posts. It's not exactly what I intended to write today, but that's how it goes, sometimes.

Part of my journey at this point in my life is learning how to set boundaries. And so far, I am really, really not good at it.

Many of the traumatic elements of my past revolve around non-existent boundaries. Unfortunately, much of my childhood wasn't a childhood at all - I was exposed to a lot of adult content and behavior, never understanding that I was a kid. That I deserved to be treated like one. Recently, I was digging through some old photographs, and I had a moment of dissociation, because those pictures were of a little girl - me - and I couldn't remember being that girl at all. My perception of myself was always as an adult - powerless in the way only children can be, but with an excruciating mental and emotional maturity. I was aware of too much, of everything except the fact that I was a child.

That lack of boundaries between my childhood and the adult world continued when I entered high school, when I started drinking at home, when more and more layers of inappropriate behavior emerged. I wasn't a child anymore but a best friend and a drinking buddy. I was biddable, bribed by affection which hadn't existed when I was physically a child. I couldn't tell where I ended and others' needs began.

As an adult, I have had to live with the choices of those around me, and part of me is still starved for affection and approval. If someone shows me love, I find myself falling, twisting myself into whatever that person needs. It's caretaking on a pathological level. It is sacrifice - not selfless, but starving.

Three and a half years ago, I received multiple - entirely justified - panicked phone calls informing me of my father's hospitalization and cancer diagnosis. And I've been glued to my phone ever since, convinced that the next call would herald some new disaster, some new demand. And goodness knows there have been some disasters. In the years since then, I have been waiting with anxiety for a life to begin, my own life. But I haven't allowed that to happen. I've been twisting myself up yet again. And it may be invisible, but there are so many days when I fear my phone, when my heart pounds, when I betray my values, that I wish I had not been born.

That's the icky honest bit that I recently shared with a new therapist - someone who specializes in trauma and with whom I am about to begin my next adventure. I shared that thought with my husband last night when I got a phone call that elevated my heart rate. Once spoken, I need to speak it often and out loud, just as I feel it necessary to talk about my bipolar disorder, my endometriosis, my problematic relationship with alcohol. Honesty is the only way forward. My trauma makes me wish that I did not exist. A lot of the time, when these disaster situations occur, I think - God, it would be easier if I were dead.

Don't worry too much, folks. I'm not going to do anything about it. But I hope, I guess, that by sharing that thought I can make it a little more normal. Complex trauma has a long shadow. Maybe, if more people knew that, they'd work harder to prevent trauma from happening.

Figuring all of this stuff out has made me realize how much of myself I push to the side in order to be available to others. And there is a helpfulness and even duty which is nourishing, which is healthy. But when I stop my life - no, when I am too scared to even start it - I go beyond helpfulness.

I am so, so lucky that I get to stay home and work on my art instead of going into an office or a classroom. And frankly, I need that, because between pain and fatigue and anxiety there are days when I can't do what normal people do. But I've let the circumstance of my unemployment lead to a sort of general availability, as if my time were not valuable just because I have more of it than others. And then I can't write, I can't paint, I can't pursue anything, because that burying of myself indicates to me that I am not important just as I am. My time is worthless in that context. I am nothing until the phone rings. When I hang up, mouth dry, breath short, I'm nothing again.

And who the hell am I, at the end of the day? I'm probably not alone in wondering - I bet most people have moments of feeling that way. But hell, I am thirty-two years old, and I'm tired of waiting. I'm tired of feeling like I'm a mistake.

I'm tired of being ashamed that I can't be what each and every person on the planet wants me to be. It rips me up that I don't want to be the Alice that I was trained to be. I like to sing, but I like jazz and musical theatre and pop music, and my voice just isn't suited for choral music or opera, and that's okay. I like noodling around on the piano but I just don't care enough to be a real pianist, and I'm not good at it anyway! Hell, my best piano playing occurs around ten thirty at night when I've had people over for a party and I'm signaling them to get the heck out. And that's good enough for me.

I hate watching television all night the way we did when I was small and nobody would talk to me. I hate eating dinner at the table but I love eating off fancy plates and drinking mocktails out of crystal. My best writing is literary and it's usually about food and sex - I can't write popular fiction to save my life. I don't care too much if I get published. I don't care if I make a name for myself.

More than anything I love to cook for other people, but I absolutely hate measuring or following recipes and my plating skills are nil. I will never be a gourmet chef, but people usually leave my home well-satisfied.

I have become somewhat agoraphobic. So please come on over and enjoy my cooking and company, because right now I cannot come to you.

I am incredibly vain. I have no problem with that.

I'm a loving person with a tremendous capacity for loyalty and affection but it is not endless - and I'm learning how to enjoy being selfish and loving me, first.

I think the highest form of wisdom is happiness. I know I have complex trauma. I'm ready to work through it.

This long, long post started because I was trying to justify turning on the do not disturb function on my phone, if you can believe it. I felt I needed to write a treatise explaining that criminally selfish act. You know - come up with some "working hours" so I can also prove to people that I'm working towards publication (which I am, but slowly) and not lazing about (which, I threw my back out yesterday, so I also currently am). Maybe, I thought, if I can make some comparison between my art and a "real job," it will be okay. Sheesh. I'm beginning to doubt that I can go five minutes without trying to be accommodating.

But do not disturb is on, and I've given you a very thorough tour of the inside of my belly button, and I'm about to settle in on top of a heating pad and write some abysmal poetry. Because I have to learn to set boundaries. Just because my life doesn't look like other people's lives doesn't mean I can't say, no, I will not, I do not want to, I need to be myself. I need to put my work first. I need to believe that my life is not a mistake, and I'd rather not wish I were dead half the time. And if anyone is unwilling to love me, the real me, because of that, then that's okay.

I'll just play Chopin's Raindrop Prelude until they see themselves out.
 

Friday, December 7, 2018

The Longest Night

In my last post, I wrote briefly about the holiday classic, "Rudolph the Red-Nosed Reindeer." Today I would like to discuss another film, "A Charlie Brown Christmas."

Watching Christmas movies has always been a particular type of pleasure for me - as a child, I was permitted to view them either in Advent or on days I stayed home sick from school. These films provided comfort and inspired a sense of anticipation; through their imagery and music I felt the pull of ritual, both secular and religious.

Charlie Brown was, and still is, one of my favorites. But with this film comes a certain complexity, a troubling vulnerability, because I can't separate it from its Christian overtones.

And that makes me uncomfortable, because I've left the church behind.

Right now, I'm wrapped up in a fuzzy bathrobe, a thick blanket, and I've plugged in the tiny colored lights on the Christmas tree, and I've got choral music playing on the radio. Antique glass ornaments are scattered, resting in silver dishes, and I've placed gold leaves and pine cones on every surface. The trappings of Christmas are evident, evoking that familiar comfort and anticipation. In a few weeks, I'll be heading up north to spend the holiday with my in-laws, and I can't wait to laugh with them, to read books to my niece and nephews, to share conversation with my wonderful sister in law. After that, it's back home to celebrate Christmas with my family - a fire in the fireplace, good food, spending precious time with my sister.

So I have plenty of secular pleasures, and I am incredibly grateful for them. But I can't help but feel that something is missing, even as I reject it. Now that I have fully separated myself from the church, I feel a longing for that simplicity - that foundation of faith.

In "A Charlie Brown Christmas," the conflicted Charlie feels that same longing for something bigger, and he finds it in Linus's monologue, a reading from the Bible. Through that passage, Charlie can center himself in the mystery of Christmas, his mundane and shallow worries falling away.

But what is there for us - for we who have left the church? Is there room for us in that mystery?

I haven't figured that out, yet. And it pains me.

Last year, on Christmas eve, I felt the sorrow that came from my first Christmas without my father. I didn't know how to mourn him, not at all, but my desire for the sacred was wrapped up in the fact that I missed him. My father, the organist and choir director, the gateway to the divine. As I wanted him back in my life, I wanted that childlike faith - I wanted to be little again. I wanted to be Charlie Brown, re-initiated in ritual, finding joy despite an existential depression. That night, after a pleasant gathering of board games and desserts, I went back to my room and played choral music and longed for the stillness of my youth.

I was missing my father, but I felt I was missing, even more, my belief.

But I don't believe any more. Or maybe I do, and I just don't know how.

I have many good memories of the church, but I have just as many bad ones. I can't deny the hypocrisy, the ugliness hidden behind gold-stitched vestments, the gossip and cattiness, the misogyny. I cannot cover up the sins of an institution which values secrecy, which covers up abuses. And you might ask, what do these things have to do with God, but if we are taught that God comes only to the faithful - if our faith demands complicity - then we are encouraged to believe in our priests, not just our deity. And I can't do that. I've known too many priests.

But where does that leave me? I long for the church; I revile it.

So I must go dig down into a new truth. What is it about my belief that I miss?

Maybe Charlie Brown found contentment through a recitation of verse, but I think it was his community which brought him joy. It was the joining together of disparate voices, the outpouring of acceptance and affection. A shallow reading of the film places Christianity as the center of a vulnerable heart; maybe the true message is about something simpler and something deeper.

In recovery, we learn that isolation is a key element in addiction. That we need community and support. Churches can provide that, and maybe that's what I long for - not scripture, not dogma, but togetherness. It was the loneliness, last Christmas eve, which shook me. It was the fact that so much of my family was gone. And in that loneliness I found it difficult to enjoy the community of my new family - I was Charlie Brown, putting quarters in an old tin can, asking for answers when they were, after all, right in front of him.

I don't know if it will ever be easy for me, an orphan in my disbelief. My loneliness is a habit. I learned it very young, and the church filled that hole for a while - when I served on the altar I was a part of a ritualistic whole. Sacred music, still an intrinsic part of my life, operates in the interplay of different voices, striving together to make something bigger than they can alone.

When it comes to the story of Christ's birth, I'm not entirely sure how I fit in. I neither believe or disbelieve. Maybe it happened, maybe it didn't - the myth is a good jumping off point, perhaps, for an exploration of the divine within each of us. The possibility of the impossible. And maybe it's a story about being alone and then being supported by a community, shepherds and angels and kings. The innocence of animals and the smell of sweet hay. Maybe it's about an inherent human need, sparked by the miraculous, for unity in our longest and darkest nights.

Maybe that miracle is available to all of us, whether or not we believe. Maybe we can have faith not in God but in ourselves.

Charlie found his happiness in his community, with or without God.  And I hope, now, in some of our darkest times, that we can all discover the humanity in each of us, that we can recognize in others that spark, a life force and a longing.

I don't need the church, but I do need togetherness.

Maybe we are all lonely, deep inside, buried in the broken places. But maybe we don't have to be alone.

Monday, December 3, 2018

Hunger

Perhaps our greatest gifts are the ones which scare us the most.

I've just returned from therapy. My homework from last session was to write out an account of the things which were worrying me; my therapist, J, was quite surprised to hear I had forty pages of narrative prose and poetry. What can I say? Give a writer an assignment with a due date and you may get more than you bargained for.

I read J a few lines of the index - yes, my therapy document is indexed. And to my delight, he actually seemed interested. Quite a few passages detailed how no one could possibly be intrigued by my ramblings, so it was a bit of a shock to learn that someone might want to hear what I have to say.

I have a complex relationship with my writing. J would call that an excuse, and it is - my lack of confidence serves as a barrier between me and my work, and far too often I let my fear of failure get in the way of the activity about which I am passionate. There are many moments when I want to write, but many more moments when I refrain from writing because I'm scared of producing something sub-par. And so I get away with procrastination because I blame my insecurities.

In my school years, I garnered some positive attention for my writing, and yet at home there was a voice which always had something negative to say. I learned I was a good writer, but not good enough. I wanted approval from the powerful people in my life, but any approval came with a price. The more successful I became the more I was criticized.

And writing is a vulnerable act. In typing out my thoughts, I expose the shadows inside my brain. Certainly on this blog I tend not to shy away from difficult topics, from the illnesses which some might not want to face. I keep coming back to the thought that it's ugly - the noise in my head, the way I speak honestly, my flaws, my anxieties. To be sick in public is an almost radical act.

J suggested that I might use my writing to help others. That by writing out the challenges I live with, detailing a complicated childhood, exposing my fears, I enter into a dialogue with my readers. That dialectic - defining and discussing intimate truths - might both assist readers in their journeys and unearth further truths for my own evolution.

As a child I felt that so much of me was in service to others. I remember learning how to mix cocktails, how to fire off bitter witticisms, how to flatter, how to cajole. Coming to terms with a new kind of service - water in a waterwheel, a self-sustaining act - may be the key to undoing my trauma.

Service can be a large part of recovery; service is only possible if we understand how to serve ourselves.

And the best way to serve myself, the ultimate renewable resource, is to write. Sometimes what I come up with ends up on the rubbish heap, phrases and allusions broken into shards and scattered like glass in the road. And that has to be okay, because I think that sometimes, if I'm lucky, my words might do someone else some good. The bitterness and gall of portions of my past, as hard as it can be to live with, can inform my cherished medium of communication. How many adults can remember being unwanted? How many still struggle? How many need someone to talk to, or need someone to speak for them if they cannot?

I'm not going to publish my gigantic therapy document of doom any time soon. But in it, the seeds of a greater calling germinate, the beginnings of something larger. My passion, purpose, and profession might be borne of my ability to be ugly in honesty. To be open, to be occasionally raw.

I'll close this (deeply navel-gazing) post with a poem. Its topic is both neglect and a resulting anorexia, but I'm beginning to think that there's a positive message, too - it's a poem about hunger, but maybe it's also a poem about the need within all of us to find a sustaining mission. To find what fuels us. It's really hard, I can't deny that. But I'm beginning to think it's worth doing.

Hungry


The old hunger never goes away.
The ravenous self-beast
Is there, always, tempting
You with mouth-watering
Hatred, with the clawing
Of the belly, with headaches
And foul breath, hooves
Scratching at the dirt
And ready to charge.
The beast will be fed -
On starvation, on excesses,
On rich food, on sunlight.
It will feast with its gaping
Maw, masticating the deprivation
Of youth, of poverty, of need.
You feed yourself.

The hunger remains.  

This poem lives in ugliness, in a space we want to escape, and yet today it makes me ask -


How can we quell the hunger in others? 
And in so doing, how might we feed ourselves?


Thursday, November 29, 2018

Forward Only

How does each generation live up to its promise?

I'm a lucky woman in that I have close relationships with multiple generations of women. My grandmother was born in '26, my mother in '59; I followed in '86 and my sister came along in 2000. I've had many conversations, both mundane and in-depth, with each of these family members, and coming away from our discourse I am struck by the differences between not our numerical ages but our cultural gestalts.

So much progress has been made in my grandmother's lifetime. Looking back at everything that happened in our country over the past 90 years, I'm in awe of everything she has witnessed. Grandmere still keeps abreast of current events, an active observer, an engaged listener.

My mother, too, was a part of huge cultural shifts - she's a staunch feminist, and her understanding of politics and social justice has evolved and grown, and continues to deepen. Her first daughter - that's me - has pushed and pushed boundaries, asking questions, rebelling in tiny ways, forcing more than a few issues. My conversations with my mother are some of my greatest gifts.

And my life has been a product of a specific time period, too. I came out as bisexual in high school, when there was even less understanding of anything other than the binary of hetero- and homosexuality, but I felt safe enough to do so. What was missing was any understanding or exploration of gender, and I feel that my generation in its emerging maturity is now able to deconstruct that binary.

My sister's generation, from what I can observe, is even more compassionate, engaged, questioning. Through my sister I have been in my mother's place, learning more and more about topics which were off-limits when I was a kid. I'm so impressed by the openness of my sister's classmates, friends, contemporaries, and I find that their complexity opens doors for me. I never got to consider my gender, even though my teen idols were those who challenged gender entirely. I never got to ask why I liked the performative trappings of gender while having no particular innate concept of what kind of human being I was.

But there are other topics, too, which have needed deconstruction, which have begged for critical thought. Some of those topics seem small, some large, and all of them are weaved into our cultural consciousness. And it's those little things which have been itching in the back of my brain - things which seem obvious to me, born in '86, but which manage to challenge an established status quo.

Discipline, specifically spanking, is one of those topics. And, unfortunately, it widens the divide between older and newer generations.

When the American Academy of Pediatrics stated, clearly and definitively, that physical discipline was bad for children, I felt that it was entirely obvious. An "of course," rather than any kind of shock. I've known my whole life that harming a child for any reason is just plain wrong. Would you hit an adult? Would you even call them names, berate them, use emotional forms of punishment? Of course not. And children are even more vulnerable than adults; it is our duty to protect them.

My mother's generation grew up with parents who didn't consider that obvious, for whom spanking was a normal way to discipline a child. Her mission with me was to do better, to work harder at being an understanding parent; in the parlance of special education, my mother strove to respond to me, not to react. But I see friction, now, between people my age who are young parents and parents who didn't know any better. There's a defensiveness - a fear, I think, that those who used spanking are being called bad parents.

Similarly, I think there is a strong reaction in some to young women who demand the same respect as men. Who demand a better life; who advocate for themselves. Many women of earlier generations lived with the expectation that they sublimate their desires to their husband's wishes and requirements. From little things, like having dinner on the table at the right time, to big things, like bearing children, many women didn't have a choice. And I think, if those lives and experiences are questioned, it might make those women uncomfortable. It might make them feel unheard and disrespected. 

Some of our elders might be deeply uncomfortable with the kind of pride both my generation, and in a greater way, my sister's generation, feel free to display. When I was eighteen I went to my first Baltimore Pride and I felt nervous, giddy, and delighted, a joyful laugh at the back of my throat; when I went with my sister this year I noticed all of the families, kids in strollers, moms, dads, teenagers in bright colors and glitter. Our culture is shifting - we are more able to be out and proud - and perhaps that might appear off-putting, vulgar, frightening.

The secrets held in those quiet lives of years past are being confronted by today's openness. And that's scary. We talk about the bad stuff in hopes it might get better; other women might not have had that choice.

We have been listening, talking, learning, and that exploration is going to continue. Even I, still a young woman, find myself confused by a lot of the terminology which exists as obvious for my sister's generation. I didn't know until recently that the word for me is pansexual; it doesn't make that much of a difference at this point, but I think it makes a big difference if young people can find words with which they identify. I didn't have the knowledge, didn't have the benefit of new information - and that doesn't scare me. It makes me happy that the world is getting better.

And when it comes to other things, harmful things like spanking - I would hope that our combined reaction might be, thank goodness, we know better, now. Even if it happened to us, even if it happened to our parents, we have been told that there are better ways to raise children. And what a miracle it is, to evolve, to learn more, to make each generation happier than that which came before.

And for women like me, for people like my sister - what a joy that we can stand up and become something other than a lifestyle accessory for someone else. Does this invalidate our parents' or grandparents' marriages? No! And I would never attempt to criticize the necessary choices that other woman have had to make. But our openness - too often seen as selfishness - means that our relationships with others and our identities within ourselves will be richer. Might be more joyful. We might be working towards a more equitable world. We might say no, sometimes, and that might make our yeses even more powerful.

There's a sense of ugliness which comes with independence. We've been taught to value others even to our own detriment. We've been taught to keep quiet about who we are, lest we offend, and we've been taught to respect our parents' methods even if they have harmed us. It's a culture of silence and a culture of secrets; it's not dissimilar from the way I dress up, the performative feminine, to hide my mental illnesses or my chronic pain.

I'll leave you here with a silly image, one suited for the holiday season. In 1964, the Rankin-Bass "Rudolph the Red-Nosed Reindeer" was released. Beyond Mrs. Claus trying to fatten up her skinny Santa, beyond the silver and gold, it was a deeply subversive film. It was a movie about people who didn't fit in, who were innately different no matter how much the world wanted them to submit, to assimilate. Rudolph is physically other, and Hermey is drawn to an unacceptable career - one might even say, lifestyle.

We see the film through a modern lens, now - it's obvious to us that "Rudolph" is a work of fiction designed to challenge discrimination and bigotry. But that message has been bubbling away, near to boiling over, since 1964, and it's a gift that so many of us can now openly identify with the misfits. Can identify with a demand to be recognized. Can identify with the beauty within all people. With kindness. With compassion.

I don't know what the world will look like for my niece and nephews, for the children of my sister's contemporaries. I think it will get even better - I think it will live up to the promise of all the things we wish for, now. And I want to keep improving, to keep questioning, and I think that whatever new words or concepts or identities emerge will help me become a more complete person. And that evolution won't negate my life, just as our modern understanding of parenting doesn't harm our parents or grandparents, just as a new word for who I am doesn't erase who I've been, just as my dedication to intersectional feminism doesn't erase my mother's early experiences with an emerging political consciousness.

We are designed to move forward, only. And I can't wait to see what comes next.   

Tuesday, November 27, 2018

The Invisible Woman

When I was twelve, I couldn't get out of bed.

It wasn't depression - though that was on its way - but it was the beginning of chronic pain. Upon waking, my back was stiff, a grinding, twisting feeling at the base of my spine. Sitting up was agony, and I still remember my mom hugging me as I tried to rise and get ready for school. She was probably as terrified as I was - watching your child in pain is a parent's nightmare.

I went through many tests - it was the first time my blood was drawn, and I had x-rays, doctor consults. And they couldn't find anything. All of my bones were where they were supposed to be, all of my blood work normal. And, for the first - and definitely not the last - time, I was told by a medical professional that this debilitating pain was all in my head. That I was making it up.

I was unlucky enough to experience early what many, if not most, women go through at some point in their lives; my very real medical concerns were brushed off. The following years were marked by this callous indifference - I can't tell you how many times I've been told that what was wrong with me was entirely fictional.

The reasons to ignore my illness increased as I got older. I'm mentally ill, so of course, any pain I might have must be psychological. I was overweight, so my chronic digestive problems, neurological problems, even hair and skin problems, were assumed to be weight-related. When I first talked to a doctor about what I knew was a gluten sensitivity, she told me to take vitamins and eat more vegetables. When I got a concussion, the neurologist was so helpful, so understanding, until he accessed my medical history and concluded that my pain was due to anxiety.

I've waited for hours in urgent care facilities, only to be treated with irritation and condescension. I've been laughed at. Imagine what that feels like - to have something going wrong with your body, to be scared, to be derided. And I know I'm not alone in this.

Women are treated appallingly in the doctor's office. Double that if you're overweight, and triple it if you're mentally ill. No one takes us seriously, and we're just as likely to be accused of prescription-seeking behavior as hysteria.

I felt this, by comparison, when I recently went to urgent care for a sinus infection. I'm thin again. I was in and out, given a course of antibiotics, within 20 minutes. What a privilege it was! My smaller body made me more credible and more important. Two years ago, when I went in with a concussion, I was there for so long, basically ignored, and sent home with the suggestion that I might take Advil.

So - my back pain. It started when I was twelve. And no one, no one thought to consider the fact that I was entering womanhood. Last year, my primary care physician told me to adjust my posture and never followed up with me, my pain brushed off yet again. And almost 20 years from those scary mornings in middle school, I've finally been diagnosed with endometriosis.

Endo has been observed in girls under ten years old. It's the cause of significant chronic pain in a significant percentage of women. There are very few courses of treatment - either continuous birth control or surgery. And it can cause infertility, which matters to me not at all, but I can't help but think - I went un-diagnosed for 20 years, and what if I had been trying to get pregnant? Would I have received care? Maybe I would have - maybe adequate healthcare for women is focused on childbearing. Maybe we're more valuable if we're the vessel for someone else.

I'm facing the rest of my life with chronic pain. The last course of treatment I attempted caused my mood to plummet, a side effect of birth control that nobody seems to care about. I'm hopeful, more than I ever have been, because at least now I have a doctor in my corner, a woman who listened to my concerns and, in what feels like a miracle, actually believed me. And I do wonder if I was believed because I weigh less. I wonder if I was taken seriously because I did all the research ahead of time, because I stayed calm and collected, because I didn't disclose my mental health status. I thank the universe for this wonderful gift of being taken seriously, because I know what it's like, I have 20 years of experiences of being told "it's all in your head."

About a third of my life is spent sitting on a heating pad, now, and popping Advil, and researching homeopathic analgesics. It's not the worst, because I have another privilege - I don't go to an office, I don't run after kiddos anymore, I don't need to interact with others. But looking at the types of pain which come with female bodies, looking at how we're treated by those people we should be able to trust the most - it makes me wonder how much other women suffer in their daily lives.

Income lost. A lack of confidence, a lack of respect. The grin and bear it method of capitalism. Problems with fertility, a sense of personal failure. Little girls who hurt and who learn too early that the world doesn't care. My mentally ill sisters, my overweight sisters - and let's not forget women who face even more barriers in the doctor's office, like ethnicity and gender identity.

Bodies are tricky and they don't always do what they should, but medical care shouldn't be this hard and doctors should do what they've sworn to do. We shouldn't have to spend all of our time doing the research about our pain - sometimes learning more about illness than our doctors might know - in hopes that we might be heard. We are not less valid because we have reproductive systems. We should not be seen as vessels, as objects, as hysterical. We shouldn't have to lose weight just to prove we are worthy of care; we shouldn't have to keep quiet about our other illnesses to get respect. 

I lay in bed last night, that grinding pain taking root in my left hip, my pelvis, my thighs, and I thought, what would my life be like if I had been diagnosed 20 years ago?

No girl should have to grow up like that. No woman should have to ask that question.   

We know what it's like to be invisible.

All we want is to be seen.  

Monday, November 5, 2018

To be True

My new fall tradition seems to be doing things in advance.

Last year around this time I was hard at work on my novel, and inspired by the final scene - taking place on Christmas day - I made big pots of sauerkraut and cranberry sauce. It was well before Thanksgiving and certainly ages before Christmas, and yet I felt the need to eat my favorite holiday foods.

I woke up this morning with no meal plan for the week - and I just finished popping sauerkraut, cranberry, and mashed potatoes in the crock pots. Leftovers are definitely in my future. And, of course, I put Christmas choral music on as soon as I poured my first cup of coffee. Once I got in the car it was Frank Sinatra and Bing Crosby, all the way to the grocery.

In the months after Halloween we are inundated with Christmas advertisements, decorations, music - and we are often drowned in a backlash of commentary, by the frustration of those who don't want to rush things. And there's a significant problem with assuming that Christmas is central to American life - in a diverse culture, it is wrong to focus entirely on a Christian holiday.

But for me - a former churchgoer, a woman of ambivalent spirituality, and too frequently a stickler to protocol - I'm finished with waiting.

Too often the holidays don't live up to the hype. Halloween serves as the top of a hill; I find myself strapped to a sled and careening down into the canyon of Thanksgiving and Christmas. It's a busy time and it goes so quickly, so many people to see, so many meals to eat, so many smiles and nods and hugs. The few days surrounding Christmas go by in a blur until I'm down in the valley of fatigue, my sled wedged in a crevasse.

And I can't help but feel that life is like that too. We race forward, pushing towards the next deadline, the next event, birthdays, weddings, funerals, friends made, family lost. As we get older our experiences grow, each day feeling shorter and making up a smaller and smaller percentage of our lives. If we're lucky, we mature, and we realize the value of every moment - it's not the things you do which form your life, but the person you are.

I used to think that I had to reserve certain tasks for certain times, or that I had to follow specific rules in order to function in my family, my society. For years I wanted things that I didn't reach for - now, still at the beginning of my life, I'm asking myself what has held me back. I know that if all I worry about is adhering to other people's expectations I will miss the opportunities which are afforded those who dare to be themselves. I've been afraid of making waves or making a mistake; I've been afraid of getting a second set of piercings in my ears, or a tattoo, or saying no.

And I'm aware that I was taught a set of values - no, not values, but rules - which dictated everything from the books I was allowed to read to the appropriate day to hang up my Christmas lights.

Our lives are so small, and in their insignificance they are as expansive as the universe. 

We have a brief time here - but since our internal lives are all we can perceive, our experiences are our entire spiritual existence, and they are vast. Our senses are limited and yet they are how we find meaning - there is a world in the smell of cranberry sauce, in the memory of crystalline snow, in the soft wool of a coat, in the sugar and salt of pecan pie.

And it is because we are both so small and so large that our actions are meaningless and terribly important. Rules are useless - kindness is without price. Authenticity with others is the only way forward because it brings us back into ourselves.

I've been lucky enough to have a close friend in my life who listens to Christmas music whenever she feels like it. At first that blew my mind - to flagrantly defy the protocol - and then I realized how honest it was, to advocate for oneself. To follow the heart. To be true, to be happy.

That friendship has encouraged me to do the same.

So I've got holiday food simmering away, Christmas music all through the house, and I'm thinking a lot about the things which hold me back and those things I wish to leave behind. I'm thinking about how small my life is - an amalgamation of values and objects and my fair share of neuroses - and how big my soul is, mostly made of love. Because my days are nothing, my moments are everything. And all I need to focus on is how to be kind, how to be compassionate, how to be authentic.

I'll make sauerkraut and remember Christmas in Bolton Hill, the fat flakes of snow falling on the holly tree, cooking with my Grandmere in the kitchen, laughing as my Grandpere presided over the table with a joke and a boyish grin. 

I'll eat cranberry sauce and remember that I was small, that I called it cannedberry sauce when it popped out of the tin, that my mother was so young as she worked hard to feed me.

I'll listen to choral music and remember my father's lucky red socks, the smell of incense too thick, the giggles of choristers at two in the morning, a race with my Dad to the first chocolate doughnut in the rectory, the taste of pink Tokay and the rice paper host.

I'll write about all these experiences, knowing that they are so precious to me, so heavy in my mind, so weightless in their insignificance.

And I'll do all of that whenever the heck I feel like it.

Life is too short to wait.

Life is too long to waste.