I just want to live.

There's a lot going on behind the myriad facets of my blood and medical phobia: in seeing others' wounds there's over empathizing with their pain; in witnessing a medical emergency there's a fear of being unable to help; in getting an MRI there's a feeling of being trapped.

I've been in therapy for a long time dealing with generalized anxiety, depression, and some trauma related stuff. What's interesting is that, as I've healed from the wider reaching problems, my panic in relation to blood, injury and all things medical related has become significantly worse. There are two reasons that I can currently think of why this might be: 1) I'm becoming more in touch with my feelings overall and 2) I really, truly, wholeheartedly want to live as long as humanly possible in a way that I didn't during the first 20 something years of my life.

In some kind of comedic timing, my improving mental health was also met with worsening physical health, peaking with a current diagnosis of fibromyalgia. In the larger scheme of things, fibromyalgia (or at least, my version of it) is fairly mild, manageable, and generally not life threatening. Combined with a phobia, however, the symptoms and effects of this chronic illness are maddening.

In these early stages of examining all of the symptoms to make sure that there really isn't anything more sinister at play, I find myself reflecting frequently on my own mortality. When I'm short of breath, I begin to imagine that I have tuberculosis. When I have trouble falling asleep because of my pounding heart, I'm convinced my heart will stop while I'm sleeping. When I struggle to push my stiff body into a standing position, I expect to hear my bones crack irreparably.

All of this comes together into a constant, electric cacophony of anxiety over which I scream, "I just want to keep living". 

I've been convinced that I don't want to die ever since a near death experience I had about 8 years ago. Before that, this belief was questionable. I tended to waiver between indifferent, wanting to sleep forever, and being okay where I was that day.

Comparing this past to my current situation sometimes makes me furious: I finally really, truly want to live and I am suddenly daily reminded of how fragile life is.

I believe it's finally time for me to face this phobia head on: to lower it's volume so I can hear the more subtle notes in the discord. Underneath the daily balance of life and death that we face as humans, I think there is a beautiful waltz; a delicate dance of being able to appreciate what I have without obsessing over losing it; of seeing this chronic illness as life changing but not life ending.

In movies and books a serious illness tends to lead to the story's hero taking some kind of life changing adventure that inspires them to live better. All I really want from this fibromyalgia experience is to find some grounding in reality; to be able to acknowledge the changes in my body without sensationalizing them. I'm strong. I know I can handle this. I just have to convince the rest of my body that it can, too.

When the "chronic" in "chronic illness" becomes real.

I was officially diagnosed with fibromyalgia about a week or so ago. I thought that the diagnosis would bring relief- I had assumed I'd had it almost since the beginning of having symptoms, and I thought a diagnosis would help me feel validated. Instead, though, I started to feel very depressed- in a low energy, low motivation, grieving sort of way.

The depression turned to anger and anxiety this morning when I woke up feeling exhausted and stiff and foggy and remembered that Monday is my longest day of work with the most clients and the least amount of breaks. When my supervisor asked me this morning how I was doing, I told him the truth and asked for help. How do I manage this exhaustion and keep this job that I love?

He brought up two things: a dialectic from Dialectical Behavior Therapy (DBT) and a story he'd heard about a president of the National Fibromyalgia and Chronic Pain Association who kicked off her presidency by hiking Death Valley and telling the world about it, and how the way she talked about and broadcasted this story could have been invalidating to so many people. (I haven't been able to find the story my supervisor was talking about, but the idea of this happening relates to what I'm going to write about so I'm going to keep it in.)

In DBT, we balance the idea of validation and change, and acceptance and change. In my case, that would mean acknowledging both that I have a chronic illness, that it has changed my body, that I can't do as much as I want to AND that there are things I can do to manage it, to feel better, and that acceptance doesn't necessarily mean I have to stop doing what I love and living a life I want.

What a struggle! How do I validate what I'm feeling AND avoid long periods of unproductive moping? How do I allow myself to feel depressed and grieve AND keep moving forward? How do I practice self-care without limiting myself? How will I know if I'm accepting too much and changing too little...and vice versa?

There are two fairly common responses that I tend to get when I first tell people that I have a chronic illness: "Wow, that's really terrible and sad!" and "Don't worry; you'll be okay, you can still do anything you want! Just have a positive attitude/eat this special diet/do yoga/etc." (There are, of course, also a number of more moderate responses in between those two, and I am grateful for people who respond in these ways).

The woman who crossed Death Valley and used it as a "You can do this too" type message may have wanted simply to be an inspiration, but this event could also have fallen squarely in the second response for so many people. I would love to be able to hike (not in Death Valley though...) that far and run and dance and work long hours and take myself on a solo road trip and have a wide social life like I used to, but I'm not there right now and I don't know if I ever will be again. When I feel depressed about fibromyalgia, it's often in relation to wishing that I could do those things and instead being weighted down to the couch, too tired to even read.

So what do we do about this? How do people with chronic illnesses still live lives that they love without overdoing it? How do we know how far to push ourselves?

How do we balance this acceptance, validation, and change?

Building Up

This is an edited version of something I hand wrote in my journal this morning:

Over the past year or two I've gradually become more aware and open to emotions that are fairly new to me: joy, contentment, happiness, self-love, compassion, wonder, and curiosity, among some other, more complex permutations of aliveness.

With this opening other new things found their way in too: memories of trauma, a PTSD diagnosis, increased sensitivity to how other people and especially animals are feeling, a more urgent blood and medical phobia, and physical pain.

No wonder humans love to numb themselves.

It seems that healing has helped me feel more alive and allowed me to start facing the things that contributed to my feeling numb in the first place. Depression and fear were walls between me and joy. They also let me hide from things I wasn't yet strong enough to face. As I've healed, I've learned to love myself, including being thrust into learning to love even the parts of myself that are excruciatingly painful.

Lately I often feel raw, naked and exposed, and I wonder why people don't run away in horror...why I don't run away in horror.

I'm in a place where I am successful, often content, proud, motivated, and purposeful. In order to get here, and to stay here, it seems I am having to recognize the parts of myself I've been ignoring. Without those parts, I can't move forward. I can't live as only part of a whole person.

It's like I was cracked open, broken, put back together quickly before anyone could gawk at the mess, and then carefully taken apart again in a safer time and place. Now I am sorting through the pieces, cleaning out the unhelpful stuff, figuring out what's Me, and working to put it back together again in a way that is beautiful and makes sense. It hurts, and at the same time, it's exciting and invigorating.

It's like cleaning out the infection I've been carrying around for decades in an old wound.

I hope this helps someone else to hear this.

Save this link and send it to me when I'm burned out, okay?

I told someone today that becoming a therapist is one of the best decisions I've ever made in my life because my job is now constantly helping me to become a better person.

I didn't go in to it for that reason. In fact, I almost didn't even go into it at all. I went to get a Masters Degree in Social Work because I felt like I was about to become stuck and unhappy with the jobs that I could obtain with only a Bachelors. I spent 2/3 of my time in grad school insisting that I would find something else to do with my degree that didn't involve so much sitting in one spot making eye contact with people all day.

Then I had a dream, woke up, and changed my mind. I'm not kidding. I dreamt one night that I had successfully completed a therapy session and in the dream I was happy and excited. I woke up craving a therapy job the same way I craved moving to Tucson from New York when I was 22 or living abroad for a couple of months: it just had to be done.

What a weird reason to make a career choice. It's like I had some wiser alternative Emily living inside me who already knew that the things I fear usually end up being the things that change my life for the better (kind of like my experience with women...I'll tell you about that later). 

I love sitting in an office all day making eye contact with people, and in a way, I can't fully describe why. I know what's happening, but I'd be violating confidentiality if I fully explained all of the incredible things that happen between those four walls every day. What I can say is that I've become a better listener, more empathetic, more content, and less judgmental. I've had the privilege of interacting with people who I might never have met in my own day to day social goings ons. I actually see change happening, both in others and in me, as I'm constantly nudged farther and farther out of an ever growing comfort zone. 

The things that scare me continue to be the things that change me for the better. I've faced men, stern parents, yelling, complete silence, trauma, people asking for my "professional opinion", boundary crossers, gory descriptions of medical problems, not knowing the answer, and so much more. And I'm only two years and 590 hours in. What an adventure!

And what a privilege. What a privilege that people trust me enough to allow me in. What a privilege that I had the support and therapy and finances of my own to get to this point, and to be able to utilize it. What a privilege that, even in the midst of a chaotic work environment, that I'm able to feel this way, and that there are people reading this and NOT rolling their eyes. 

Even if someday I do get burned out or I decide to make a career change, I'm grateful for the experience I had up until now, for as long as it lasts. 

Far From Home

NaPorWriMo 2017 #21

A human carrying a thick suitcase,
Always around like a shadow
Under the direct Tucson sun
Black and yellow under blue skies:
This is the shape of chronic loyalty.

Spread on a spectrum between two coasts
To where I finally found a method
For unpacking the baggage,
The endless boulders and mud
Once thought to be precious gems;

They're now less heavy and ambivalent
So I can make my own home
Over all that confusing scaffolding.

Ekphrasis

NaPoWrIMo 2017 #10

All I have left is the painting:
A life sized, black and white rectangle, a mirror.
I always start on the right side,
Where it's flat and easy to navigate
And the face is half hidden in shadows.
Here it's a photograph, half-heartedly embellished
And mass produced, easy to collect and counterfeit.
When boredom sets in I move toward the light;
The face grows into glowing mountains,
Inspirational and idyllic with tears and hidden rainbows.
Every time I adjust the light
A sense of peace rises wider over the landscape.

Pastiche

NaPoWriMo 2017 #9

I am many pieces, like magazine cutouts 

Of the best parts of models' faces, 

Reassembled into something new.

I am layers glued to blank paper

Thick and crackling, edges loose.

This never ends. With every issue

I grow larger, more modern, 

More complicated and interesting.

Sometimes ripping and peeling back,

Searching for the best combination. 

Sustain

NaPoWriMo 2017 #5

You, Mirror, bring moments of sustainability:
In clarity, fog wiped away,
Bold outlines, sweet accurate reflection-
I float and am recharged
Opened, unfolded;
In your echo I am real.

Travel

NaPoWriMo 2017 #4

I try to use borders as a mask:
To hide, to forget, to be new and humble;
Through dark colors, facial expressions, and ordering food;
I want to forget my own history, start over,
Pretend I can't be found.

Yet there I am: in sweat, in poetry,
In dogs wearing sweaters, in selfies
In human contact, in laughter,
Borders become hollow.
We are red strings attached by thumbtacks;
We share fingerprints and knowing glances.

Are You There, Anger? It's Me, Emily

Memories aren't always reliable, so maybe I'm exaggerating, but I remember being angry and not really knowing why for most of my childhood. I think my fourth grade teacher once called me "sour grapes" and I have photographic evidence that, when my group of friends in middle school decided to dress up as Snow White and the Seven Dwarfs, there was no question among us that I would go as Grumpy.

As a young adult I got tired of this reputation and tried to swing to the other extreme of letting go of all anger and empathizing with those who I felt had hurt me. Unfortunately, I didn't quite make it to letting go of the anger and instead only managed to turn it inward for a while.

Now, at the ripe old age of 31, I'm finally trying to find the balance; the place between assertive, constructive anger and turning the other cheek so many times that I am flipped inside out.

I've talked about this a lot in my own therapy, and I am still confused. That dude hollered at me from his truck- I have a right to raise both middle fingers, yell, and then stew about it for the rest of the day, right? My co-worker crossed my boundaries again- I get to assertively tell him to leave and then tell his supervisor, right? This for-profit corporation made decisions that make my job harder and might be unethical- this is when I speak up and tell people why they're wrong over and over again for weeks, right? I'm totally being the assertive adult I've always wanted to be and I'm not overdoing it at all, right?

In order to complicate things a bit further, I decided to jump back into Social Work School and become a Therapist. Now I have an Empathy Problem. I know too much. I can find a reason behind most of the things I experience that bother me. (No one taught them that that's not okay, he's anxious and wants help, it might actually work out pretty well for our clients, I'm reacting because this triggered something in me and if I take time to process it I will feel fine.)

I am an adult, and I still feel very confused sometimes about when and how to be angry and assertive in a way that is productive and healthy and prevents me from becoming a doormat or an ogre.

How do YOU decide?

Definitions, Politics, and Social Work

With the exponential increase in political discussions that have risen around me recently, I've noticed something that is making many it hard (at least for me, personally) to reach common ground and sometimes even respect with the people I've engaged with: many of us seem to have very different definitions for the same ideas. This has happened most often with open-mindedness vs. close-mindedness, , and love vs. hate. 

Recently, (but not for the first time) a certified Internet Troll told me I was being close-minded because I wouldn't entertain various racist alternative factoids that he shared with me. I realize that I also found him to be close-minded. I don't know how much research or thought he has put into the ideas he adheres to, but he was as stubbornly stuck to his as I am to mine.

I know we aren't talking about things like whether or not pizza flavored macaroni and cheese is delicious, and that lives are endangered because of the ideas that we had the privilege to argue about.  As I write this, I'm realizing that I don't actually care much whether I'm perceived as open-minded or closed, but it's something that keeps coming up. How should I handle it?

The same happens with love vs. hate. This has been especially clear to me as I've gradually become more open about being queer over the past decade. To some, a "love the sinner, hate the sin" mentality is Christ-like and loving. To me, it is a clear judgment and reeks of conditional love rather than unconditional. 

When the Women's March happened a few weeks ago, many marched with signs that said "Love Trumps Hate" while some who did not march called the rallies themselves hateful. 

How do you, personally, handle these types of arguments? I generally tend to avoid them because they don't feel productive. Are they? Is there a better way to go about advocating for myself and for marginalized populations? 

I wonder if the answer to those questions would be more clear if I were not a social worker. I take my career choice very seriously; it makes up a generous portion of my identity. As a result, I feel that I'm faced with some things: my strongly held beliefs about human rights and social justice, using my privilege and my role to be an advocate for people with a wide variety of needs, my belief that everyone has the right to self-determination, and my desire to help people through providing therapy. The second two sometimes clash with the first two, and sometimes personal and professional bleed into one another in confusing ways.

How do you handle this?

23/30

It’s a loneliness that makes my heart feel hollow,

Radiating an echo that keeps the world away.

I want to wear you like a cape, fingers clutched on arms

So hard they’re leaving grooves. I don’t want

To have to feel the wind, even when I can hear it whistle

Through my desperate core.

Over and over again, I lose myself in someone else.

Love Poem

Sometimes everything comes into vivid clarity:

The rabbit, staring at me from the bedroom floor;

Your name, on my computer screen;

The poem I just read that must have been written for me;

And how much I love all of it; so much

That my heart cracks in two for lack of room

To hold all the fresh blood I’m pumping.

Thick lines hold everything outside of my body

In place. Nothing can run over or away

And all feels content. But:

It is in these moments that I miss you the most;

You, who would not just understand but share,

Who could draw out colors to reach their fullest potential

Who could make an already full moment

Burst into a second life;

It is the obvious lack of you in these

Otherwise perfect moments, in these times when

I feel most alive, it is your complete absence

That brings me to my knees with doubt;

Questioning my effort to be a whole person

With only one body to use.

Socially Anxious Poetry

#22/30

I started by cowering in the back of the room

Mouth open in awe of the woman before me:

She spoke my mind without ever meeting me,

She spoke her experiences to life,

She spoke.

I started by crying in the back of the room:

I could have written that myself

But I didn’t.

I walk through every day afraid of

The next moment someone will speak to me.

Kind words or not, human interaction is terrifying.

Drugged up or not, I have no idea what to say

When you smile and greet me.

I may have strong opinions and the words to share them

I may be talented at all the things I try

But the only thing that matters in the moment is that

I can’t catch my breath.

Yet, here I am! Alone, onstage, barely breathing,

Because I found power in poetry and I propelled myself forward;

I found healing in yelling my thoughts before an engrossed

Audience; FINALLY someone is listening, finally, someone is

Hearing me and cheering me on, finally, I don’t need a surrogate,

Finally, I AM MY OWN VOICE.

I walk through each day with my eyes lowered

Afraid of the vulnerability of eye contact. I flinch when

Someone tries to hold my hand, I don’t know
How to deal with a compliment. But,

I have meaningful ideas and I have found the words to share them.

I stepped in front of a crowd without a bullet proof vest and I

Emerged with lungs of steel and a voice like a siren and I

Will continue to shout from the stage

For myself

And for the person cowering in the back of the room, waiting

For their chance to come to life.

The last straw

Discouraged minds want to know: after all these years, what made you leave?

As if there were one moment that changed my opinion, one thing that

Might bring me back. But I have a list that is years long and it goes like this:

It’s the existence of other cultures outside of white picket fence suburbia

That aren’t suffering for lack of steeples and Sunday school,

The recognition of beauty and goodness in the differences I used to fear.

The survival of other religions who preach the same love and peace

Without the violence, guilt and shame.

It’s the appreciation of joy in non-believers’ eyes,

The families in South Africa who shut their doors before we reached them.

The children who continued to starve after hearing the word of God.

The fifth rape of the same loyal follower and the blame

Of the victim and the sins we all commit without even knowing.

It’s the boiling down of my faith into bullet points and digestible phrases;

The incongruity of the classroom and the material world at Christian college;

The sensation of weightlessness when I unlocked the fence holding back my intellect.

It’s rebirth and finally finding joy that used to be slightly out of reach

Outside of the church, on a self-sufficient, sacred journey in the desert;

The discovery of life before death, in everyday existence,

The freedom and healing in acknowledging my struggle with abject depression

And decisively proclaiming the things it makes me feel.

It’s the joy of sex outside of marriage, with both genders, without shame,

The patterns that have repeated all my life that demonstrate I was born this way;

The unadulterated joy of accepting myself without need for outside approval.

It’s acknowledgment of my own weaknesses and the way they prevent me

From being able to speak intelligently on behalf of the supernatural,

Empathy for alternate circumstances; sympathy for the routine mistakes of humanity;

Rejection of judgment and recognition of the common ways in which we all struggle.

It’s intolerance, fear of the unknown, clouded explanations and contradictions ignored:

All of these things were the last straw.

Ghazal

I have fallen in love with ghazals!

#17/30

I was reborn in a hospital bed, studying the poems of Rumi.

There is so much left to be read; welcome, new life.

To the desert I was led, following luminous intuitions.

Among the cactus I began to mend; welcome, new light.

I’ve got memories scarred into my head, suspended in unstable shapes.

They mark places from where reality fled; welcome, new story.

This is where I find my daily bread, living not on this alone.

It doesn’t taste like what you said; welcome, new knowledge.

Among the mountains I have bled, looking for an answer.

Meet me there and we’ll forge ahead; welcome, new love.

Look at all the mouths you’ve fed, Emily, on your journey forward.

Without you there’d be one more dead; welcome, new poet.

Bright and Dark

National Poetry Month Poem #2:

I am a 1960s pop art illustration

Emerging optimistically after a long, bloody war.

My soul rebels in vivid color

From within a thick black outline of a body.

This crying woman knows it’s time for change;

Time for me to take well-known images of pill bottles

And beer cans and cover them with brightly colored ticket stubs,

Love letters, and published poems, time to re-work

Abstract dreams of a successful life into steel

Sculptures of attainment. It was nice to try different shapes for a while

But now I know what I want: I want to live as a subversive work of art

Forever an oft repeated emblem with a familiar meaning;

An icon known and loved for being true in every color permutation.

Thank you, Lichtenstein!

Introvert

A rough draft/first writing, but I really wanted to share this. I'll share it again if/when I fix it up.

We found a pet rabbit in the backyard

A skinny, gray rabbit too scared to protest being handled

Too scared to eat, to move, to bite.

She was the timeless children’s classic, the discarded Velveteen,

Except she never found her way back home.

For weeks, she ran from touch. She lunged when I moved a hand toward her nose

She fought and kicked when I tried to pick her up, she grunted at the cat.

For weeks, she was all I could talk about. I shared her picture like a parent

With a new child. I giggled about her grunts, I rolled up my sleeves to

Show off her bites. I told my therapist about her

And she instantly became a metaphor. All her rabbit habits are mine as well:

The distrust, the fear of touch, the hiding and the digging.

I lay next to her cage for hours to gain her trust

The way the rabbit websites told me to

The way I wanted someone to lay next to me.

A co-worker once jokingly called me the rabbit whisperer

Like I have some secret way to communicate and teach a fragile prey animal

To trust, to be comfortable, to eat food from my hands.

But it’s not a secret at all: I and the rabbit have the same wide eyes,

The same speeding heartbeat, the same vigilant posture.

I only treated her the way I want to be treated. 

Boundaries

My fear of people exhausts me.

My muscles ache from holding them clenched so tightly;

always bracing for the sudden impact of

Someone else’s interest in me.

(Who hit you? My therapist once asked.

No one, I said. But if I hold myself like this

There will be less of me for them to judge.)

I consistently avoid eye contact.

Because  if I look at someone directly,

They’ll climb inside me and inspect my inner parts,

Poking and prodding where I feel it the most.

Can you see where I’m going with this?

All human contact is raw and ardent

And most of all, physical.

So I never feel like I’m wearing enough clothes.

My fear of people exhausts me.

I’m tired of the muscle aches,

The lowered eyes, the cold.

No one actually wants to hurt me.

If they're anything like me

They just want to climb through my eyes

To find something of themselves

Some sort of reflection, some validation

That they'll be remembered somewhere.

If they're anything like me (and they are!)

They're looking inside someone else

Just to be reassured they're still alive.

The Lack of Something

"Why do you stay in prison when the door is so wide open? Move outside the tangle of fear thinking." -Rumi

I spent decades of my life in prison and when the door was finally opened it took me years to walk out of my cell. (Today, I still sometimes gaze longingly outside from behind the bars on the window of my house, just to experience that reassuring feeling of confinement.)

Once I made it out of the prison I slowly expanded the spaces where I felt comfortable existing. From my bedroom to the kitchen to my car to the café where I sat for hours suspiciously eyeing strangers who didn't care to hurt me or even steal my food.

When I was locked down I grew to like being alone. the sounds of coughing and clanking and cursing assured me that someone was always nearby, and solitude was consistent and enforced; an opaque wall that kept me unnoticed and unscathed.  When I gained the choice to fraternize, loneliness crept in like a slow growing mold, filling my expanded space with stark, empty, uncomfortable silence.

This year, I tried to find one word to describe what I want to accomplish but there's no antonym for "loneliness." I've finally settled on the word "unlonely"because my desire is so intangible  it can only be expressed by the lack of something. Maybe I need to stop chasing it as if it were something I could tackle and lock up for safekeeping.

I think this is a good year to stop expanding. I think I will finally give up the handcuffs and even the prison bars in order to become the lack of all the things that have prevented me from letting people in.