Wednesday, July 12, 2017

Today I Threw Away a Shirt, and other stories

Today I threw away a shirt.

Two days into my 29th year of riding this globe, I threw away a shirt.

I’ll tell you why this is significant. It wasn’t just a shirt.

It was the shirt I was wearing on a day in February 2017 when I intentionally overdosed on prescription medications.

Most people do not know about this. Most people were told I was hospitalized for a GvHD flare-up. I have not been able to write about it; but I knew in time, the impulse would come. This is part of my story. I am still living it, but I am afraid if I wait until I’m ready or wait until it’s over I may not be around to tell it. That’s the truth of it.

This past year has been record-breaking; I’ve never struggled so much in my entire life. I’ve been through what I thought was hell already. Turns out I was wrong.

There are much worse things than a life-threatening illness. There are much worse things than chemotherapy and hickman lines drilled into your chest and ass needles the size of javelins burrowing into the back of your hip. There are much worse things than killing a rogue immune system with a life-threatening treatment. There are even much worse things than eleven months of quarantine from the world. I honestly didn’t know that was a possibility.

But there are. It’s called aftermath.

After all of of these things, and more, because honestly I can’t list it all and you don’t want to read that shit anyway (it includes literal shit, too. Like when you contract a weird meningitis one month after your transplant and almost die and shit the bed and are hosed off in corner the hospital bathroom like a diseased factory animal waiting to be slaughtered. But I don’t want to overwhelm you with TMI anything.) After all of these things, one more thing after another, I kept thinking I had hit the bottom. Rock bottom, here you are. Okay. Oh, this is Terror. Oh, no I was wrong, THIS is Terror right here. Holy shit, THIS IS TERROR? Until I can’t even make a stupid exclamation anymore and I’m wordlessly paralyzed lying on the floor wanting with every useless fiber to just melt away into the earth like I never happened.

And so it goes, another low depth I didn’t think possible. Over and over again. This is depression, I am learning. I have dealt with depression for most of my life, but nothing before now has been anything like the past year. And I can’t put a date on it because everything's a blur. Dates, faces, names, to-do lists, memories, vocabulary… it’s a blur. Every day slips into the next one, vaguely linked together with bouts of sleepless, painful nightmarish hours of darkness between times when the sun is lighting up the part of the globe I happen to be sitting/laying on. For many people with depression, sleep is the escape. Bed is the safe place. For me, it is a battlefield. My autoimmune disease from my transplant causes me to not sleep, and more. I wake up 3-15 times a night with excruciating muscle spasms. I’ve only come to realize that, they haven’t gotten easier. I’ve just gotten stronger. Or something. Or at least, I’ve gotten used to the pain to the point that I know (usually) the intensity of the pain and how long it will last that I don’t have full mental breakdowns in the middle of the night as often anymore. Often I lie awake with anxiety about trying to go to sleep that it is 4:30am before I know it and the birds are starting to sing and the sun is rising. It does not bring me joy, and that makes me even sadder, to know I am numb.

My personality has once again, and worse this time, taken a nose dive off a cliff into an unknown sea depth and my pockets are full of stones. I feel broken, intrinsically. It’s hard to put to words, but if I don’t try now, I don’t know that I ever will. I’m terrified to post this, and I almost never feel that way about anything I write. Not like this.

Because I’ve been hailed as a “warrior”. Strong, powerful; I’ve even crowned my body as the Greek Goddess in times passed. But she’s dead. Or hiding very, very well. I guess that’s my glimmer of hope still, peeking out. Didn’t know I even had that, so there’s something.

She’s not dead, all the time. There are moments when she is okay. I suppose if my bed was a refuge I would possibly be even worse off than I am, which is hard to imagine, because I’d be  there all the time. But it’s not an escape, sleeping is not an escape for me. I don’t have an escape. I feel isolated, alone, sad and broken everywhere I go. I feel I don’t belong anywhere. My myriad problems are so far reaching that no one knows wtf do do with me. I don’t fulfill anyone’s checklists, only parts of them; so I get passed off and passed over. This is true. I wish it wasn’t and it’s hard to write this. I am letting people I love down. And even worse, I am letting myself down.

I wanted so much to be the woman who fucking burst through cancer like Wonder Woman, came out the other side with gnarly scars but tales of wisdom and with a flash of wit. But I’m just not.

I want to stop writing now, but I am going to keep going to see what I discover.

I wanted to be the superhero of my own story, but the actual truth is that my mother, Joy, is the superhero of my story. She is my best friend, the only person in this world who has seen everything, including hosing off my shitty butt for literally 29 years now. Thankfully that skill hasn’t been needed since I was 24, but still. She’d do it in a heartbeat if it meant helping me in some way. She is the most selfless person I have ever met, and will ever meet. Most days when I still want to disappear and cease to exist, she is the reason I can somehow crawl through.

So, if you’re still reading, you probably have some questions. Maybe not questions you would ever ask in person, because mental illness and suicide is so taboo that no one knows how to talk about it. I don’t either. I’m just trying to tell a bit of my story.

I was hospitalized with a very bad round of pneumonia at the beginning of this year that knocked me on my ass. It made every other pneumonia I’d had (which are numerous) feel like seasonal allergies. Every hospitalization comes at great mental cost. Less autonomy, less ability to function, less alive. January 1, 2017, I decided I was going to either shave my head or kill myself that day. It seems unreasonable, even now, but it’s true. I shaved my head.

And I finally looked on the outside how I felt: like a terrifying ghost sent to haunt some girl’s life. I have a picture of that day. I looked like I was still dying.

I remember thinking about it days afterward, regretting shaving my head and how, had I chosen the other option, there would be no place for regret. I found some solace in that. It didn’t last long, I guess. I started a partial program, but I hated it intensely so I stopped going.

Fast forward.
End of February found me dully staring at a handful of pills saying aloud It’s so easy. It’s so easy. Apathy. I don’t remember much after that.

I remember my mom bursting through the door I had sealed off. I remember vaguely the EMT dumping and counting pills on this desk that I am currently writing on. I have flashes of being brought down the stairs, them not being able to get an IV in the ambulance, the flourescent lights of the ER, police officers everywhere, asking how many pills, passing in and out of consciousness- was I dreaming or awake? Is this what dying feels like? This is what dying feels like. This is what dying feels like. My mother holding my face, crying, Not today, sweetie.

I was in ICU for several days, four I think. I won’t go into details but it was horrifying and confusing. No other words grasp it, really.

When I finally was more stable, I moved to a hospital floor under 24/7 supervision. Some of these folks are much MUCH better at this job than others. I could talk about mental health treatment for days, but I won’t.

Then I went to my first psych ward. Transferred at 1am. This one doubles as a geriatric ward (??) and so my exposure to diarrhea was immediate. The next morning I discovered that I had, in fact, slept in a bed with feces on it. I was told Oh honey I’ll clean that up for you. As if it was mine. I couldn’t fathom what was happening to me.

I got out relatively early because I had an apparently common burst of vivaciousness after an unsuccessful attempt. I was glad to be alive.

Fast forward.
I go to a scheduled check-in with my psychiatrist and it ends with a very distressing admittance via ER to another psych ward. Cue Terror of a busy ER. People screaming, crying, bleeding; the sickening laughter of nurses amid the chaos and the squelch of wet shoes on dirty hospital floors. Apparently it is raining. When I’m finally transferred, again at 1 or 2am, I’m put in a padded room that I only later find out doubles as their intake room and would not, actually, be where I would be staying. The first words I hear at 1am from a night-shift worker who looks like he’s in a shitty nu-metal band is, “What’s with all this transgender bullshit? You one or the other, fucking pick.” This is a direct quote. He was talking to a coworker who agreed. For all they know, the emaciated depressed girl lying in the padded room three feet away is trans. Thankfully I am not a trans person in a psych ward but it cuts through me like ice. The world is cruel. I want to cry but I am too shocked at everything. This stay is long. Terrible. Dehumanizing. Weeks go by. My mind goes numb, buzzing like a flash-bang had permanently gone off.

Fast forward.
I’m out, but not about. I am trying to put together a play for my theatre company; the one place I feel safe.

I go to MGH to attempt to address another piece of the problem; the “cycle” of doom as I am calling it. Chicken or the egg: Depression-->Chronic Illness-->Not Sleeping-->Not Eating-->Muscle Atrophy-->No Autonomy-->Chronic Pain-->Anxiety-->Depression. It never ends. Maybe psych meds aren’t the answer...they haven’t been working for me. I think there are just too many other factors and just modifying brain chemicals isn’t working. GvHD and/or depression, who knows, all of the above, has my body weight dropping. I’m trying to stop the shriveling but it’s proving nearly impossible. I weigh in under 100lb. My fatigue level is astronomically high. I still can’t sleep. I have no appetite and swallowing is physically difficult as my throat and tongue muscles have inextricably atrophied like the rest of my body. Depression descends like a shrinking grimy dented metal cage from which I see the entire world.

I leave MGH floating on a slightly elevated hope, somehow. Everything is not terrible. High praise from me. 

Fast forward.

I cancel/postpone/whatever verb makes you feel better about yourself The Play; for several reasons but I realize that pushing myself to do this show even for the next two months will actually kill me. I had already scheduled auditions. I had written the script. I had put a sizeable deposit on the space (which I still haven’t received back.), I started a GoFundMe for the production. I pull the plug.

I fall further into the hole.

Every morning I wake up and I cry. I don’t know why, it’s all I have. Sleep is for recharging, it is a nightly battle of my body and I always fucking lose. I try to sugar coat these experiences to make them more palatable for my loved ones. But I cannot shake this dark feeling that it’s just other people’s selfishness that keeps me from taking pills again.

But the truth is, I don’t want to die. I don’t. I don’t think I am worthless, intrinsically. I believe humans are important, worthy of love, worthy of forgiveness and compassion. I am one of them, on my best days. But this body I am trapped in is more than a shitty cage. It’s a shitty cage that talks to you, it can’t eat, sleep or climb stairs or lift anything over four pounds. I’m wasting away, I say over and over it’s like my body is dying. That maybe I’ve done my part already, and I’m not supposed to be here anymore. I’ve cheated death several times now. I’m in pain all the time. I can’t do this anymore. I can’t do this anymore.

Then something lovely happens: a day at the MFA with my mom, a road trip with a friend, watching movies, a new art project. For few moments here and there, depression fades slightly. It gives false hope to both me and the people I love, because depression always comes back, rearing, and I’m always facing an empty bed like I’m going to war every night. I am more afraid than I have ever been.

I want to talk about this solely because I don’t think I’m alone. I feel alone. God, I feel alone. I feel so fucking alone. But we humans hide a lot. From others, and from ourselves. I am trying to not hide. This is really hard to write, I’m still struggling. But perhaps there is still a glimmer of a human spirit in here, who can say. All we want is to not feel alone.

The heaviness of every day. The self-hatred when I can’t force myself to eat, when I can’t leave my house because anxiety has taken over and I want to disappear. I want to be in a body that works, that doesn’t want to cease to exist. I want a brain that doesn’t wish so deeply that I had never been born, telling my mother this on my 29th birthday. Watching my mother cry. I want a life where I am free.

I want a life where my Terror turns to Beauty. I want to believe it’s still possible, but that hope is more faint than it has ever been. I can’t find the words. Having a failing body, mind included, is baggage no one wants to carry around. The burden of how much this world has gone to shit the last few months; I can’t even start to talk about it. I cry for the world, how I am unable to change it, not even in a minor way. I watch people get hurt, hurt others, and hurt with them, and I can’t take it any more. I watch BBC baking shows because for those 45 minutes I am anywhere else but here.  

God is either Love or all powerful. God is not both. This is also terrifying.

A couple months back something traumatic happened and it ended up with me walking alone over two miles home, mostly through the Beverly cemetery. I'm not actually sure how I did that. Two miles. I cried over dead people I didn’t even know. I fell down a hill and cried because it took me a really long time and a lot of effort and pain to get up because my muscles are so weak. I touched every headstone I could. I finally asked myself if I wanted to end up here, silent. If that’s all I am good for now. The fact that I cried while I asked myself this told me No, it’s not what I want.

I need to at least tell this story before it’s too late. Depression is a life-threatening disease that no one talks about. It can kill at any time. Sometimes there are tons of warning signs and symptoms, sometimes none at all. But I need to stress that this is a disease. In one, frightening moment of clarity right now, I am able to see it as something separate from my true Self. Something I am unable to do most days. Most days it feels like it’s all I have left, it’s what’s driving this thing. Everything else about me has died and I’m doing a really shitty job at faking being alive.

But today I threw away a shirt.

It’s a(nother) start.

Friday, May 5, 2017

It doesn't get easier. You just get stronger.


Warning: some harsh language ahead. But, yeah. Life is [insert harsh language].

---

Still at MGH; been here since Monday. I just went down to the second floor to have a swallowing test; as I seem to be aspirating things when I swallow. It's not apparent from looking or feeling externally, but since I keep choking they waned me to take this test to have the X-ray to look at for comparison.

I did not sleep last night; maybe 3 ½ hours. I was up late talking with my sisters. To be frank: life is fucking hard. There’s no other way for me to describe it right now. Life is hard. God Damnit. And it’s so fucking hard in so many ways; you can’t toss a pebble without breaking glass.

So I didn’t sleep well, even after we decided to all go to sleep at 4am. I miss my sisters, I love them so much and it hurts me to think of all the ways that life breaks a person down to the bare minimum of humanity. It hurts me so much.

And I’m so tired of not being able to properly cry I could just scream until I die. My eyes don’t produce tears (and the same for my mouth/saliva…which is one component making swallowing infinitely more difficult) and I haven’t cried tears in over three years. I forget what it feels like. But I miss it all the same. When I cry, my face contorts and my body hurts- I often get headaches from the tension and lack of release. But there are no tears.

So I’ve been (not) crying most of the morning, if I’m honest.

But when I went down to take this disgusting swallowing test, (I get so much anxiety from having to put foreign objects into my body; barium isn’t “absorbable” by the body, but that really doesn’t make me feel any better. I’m still swallowing a soft silvery metallic alkaline earth metal. That’s the truth. I don’t want it.)--

But when I got down to the waiting room before the test, this cute technician came through the room I was in; laying on my stretcher, looking a mess. He smiled at me. And then he turned around to leave and I read the back of his shirt:

It doesn’t get easier.

You just get stronger.

It washed over me like a tidal wave. I felt everything at once. I wept, tearlessly. My heart broke. My soul ached like it was leaving my body for dead.

It doesn’t get easier. You just get stronger.

That statement drowned me, as I'm sitting lifelessly on the stupid stretcher covered by a thin blanket. I wanted to believe it. I do believe it. But it’s so hard to. I don’t feel like I’m getting stronger. It’s the opposite. Everything feels like it's getting harder. I feel like my body and soul are just giving up, slowly letting go and letting go and letting go after trying to hold on for so fucking long. It’s just so hard. I want to believe I am getting stronger. That I can conquer all this shit. All the physical failures of my body; rise above. All the weight of my psyche; ascend like a goddamn phoenix. Own all this. Own it all, claim it as my life, shitty as it is, and just rise. Wake up, emerge, rebel. Survive. Be better on the other side. Stronger, deeper, richer, wiser.

But the truth is I’m tired. I feel more often than not that I’m just done with all of this. Finished feeling, being, existing like this any more. I feel like I can’t do it any more. My body withers away, over and over before my tearless crying eyes. I watch as my mind plays devil games. I feel helpless against all of it. My auto-immune disease is mysterious and unfamiliar; no one has answers. And my mind is along for this villainous cycle; riding the roller coaster from Hell through all the zero-G free falls and it feel like there is no end.

But.
It doesn’t get easier. You just get stronger.

Makes me cry. and I can’t help but admit it’s because I believe this little anecdote. I want to believe it. That human beings are fucking phoenixes. We rise from the burnt ashes of our lives over and over again. I’ve seen it so many times; my heroes, these incredible spiritual masters who live through unimaginable horrors and emerge on the other side: stronger, deeper, richer, wiser. And I want to believe that for myself. I have this sneaking suspicion that hope is still out there. And it makes me weep.

Life is hard. It’s so fucking hard. There is so much loss. Sometimes it feels like there is nothing but loss. Loss of faith, loss of childhood, loss of innocence, loss of life. Heavy things we have to carry forever. Poverty, starvation, grief, disease, racism, despair, hatred, the weight of the world. How can a person bear it?

I don’t know. And yet we do, somehow.

I keep thinking, reminding myself: be the superhero you want to see in the world. Be that person who rises from the ashes and spreads her wings like a fucking Queen. Be that wisdom, strength, power and resilience. Embody faith, trust, hope, love. And the greatest of these? Love? Love for yourself? Love for the world? Love that conquers all the darkness that drowns the world over an over?

It doesn’t get easier. It really doesn’t.

But maybe we can get stronger. Maybe I can be stronger. Strength in weakness; the ultimate paradox. The reason why the story of Jesus and a God who embodied every pain imaginable makes me weep. Because it was for love. It is for love. There is profound strength to be found. Even in weakness. I see it, over and over in people I love and admire and hold in the highest regard. Now I just need to be able to see it in myself.

 This is terror. This is water. This is beauty. This is life.

Wednesday, May 3, 2017

earth day is every day


Thoughts on the earth, which is the cosmos, which is the Truth
---------

Are we on the back of a whale,
riding the sea like a cruise ship
strapped to the back of a marine placental animal;
holding our collective breath
when the rogue mammal dives deep
to feed, to live?

If she is our warm-blooded mother,
slipping into the sea after land evolution
grew too tiresome
if she is our ride through life
this in one fucking hell of a jaunt,
I must say.

But she knows sacrifice.
She knows the extended song
of grief
she echoes her viscous melancholy
throughout the oceans wide.
She travels thousands of miles
to the Earth’s equator to give birth;
calf after calf after calf dying
at the hand of our foolishness
we've been hunting her down for years
for oil to burn,
bones to carve;
corralling her to perform tricks;
her dying over and over in captivity
and all the while we are
dumping toxins over the edge of this ship
on her back
onto her body, into her mouth
infecting her water, her air
stifling the life of our caregiver—

Could we have honestly expected anything different?

------

“The sky looks like it could kill,” he said
as we watched the dark turbulence roll towards us;
we were sitting nonchalantly, dangling bare feet
over the pier; the ocean rippling in
preparation; our old shoes and socks laying lifeless
at my hip.

It could, you know. Kill us.
The universe has no
thought to us.
It’s constant quest
is a search for a balance, that
homeostasis
which is heartless, unfeeling.
Perhaps not evil, but not compassionate, either. 
It's a toss up.

Maybe it could kill. After all, lightning split
the tree next to my parents’ house
straight down the middle
its blackened tar burn
along a jagged edge
of something that tried to be alive.

The wind can make a funnel
that takes you away.

The water cycle, which is the sky,
which is the earth,
can rain, storm, hurricane and flood
when we least expect it
it can freeze us to death in ice
it can boil us alive where the delicate
ozone has started to disintegrate.

The terra firma, which is the ground,
which is the earth
can give way, tsunamis and famines
drown us or whither us away to nothing

The universe has
no thought to us.

But, as a thought bearing soul
in what seems like a vapid chaos,
perhaps it is my job
to have a thought for us.

It’s a burden, to care for everything
to break the planet’s fever
to feed the young
to weep for injustice
to plant trees and sit in their shadows
to rescue the lost
to save the exiled.
It's too much.

But this sneaking thought,
trifling, skirting around my mind-
which is the heart, which is the cosmos,
which is the Truth
slowly growing
like a creakily opening fist
gently, stiff and hurting
from holding on so tightly; slowly
unclenching the world:

the words are small. 
 
if I give some of this to you,
we can do this
together.
 

Wednesday, April 5, 2017

sing a sweet song of catharsis

a bit of barely-edited work I wrote in writing group the last two hours. It endlessly fascinated me how three different prompts yield three different works, but there always seems to be a through-line. I never know my brain until I start writing, and even then...

1
the tendrils of our roots
intertwine. I don’t know
what’s yours
and what’s mine.
but we’re stitched together,
you and I
bound up like dry twigs
ready to burn with the world.

2
I know you are there.
Sometimes you’re the bird, and I’m the cage
and sometimes we switch
I don’t know which I like more
to hold you, or to be held

3
these steps to my heart are small,
like rungs of a dollhouse ladder.
you can scurry up them
and get here quickly.
and just as swiftly
you may also leave

4
There are ancient scrolls that say
many great things
many great things
many terrible things
about the world
how it was made, how it died
while God flew over
and watched us burn the world
over and over and over
and over and over and over and over

----

I was really going there.
Those were the two sides you needed
and I, of course, had been all of those.

It’s a dirty place, scattered and
I don’t remember thinking
"she’s just lost her mind"
I just think:
most of the good things
toward the end
was a bit like love

I didn’t cry
the first time I saw it.
I didn’t go up with tears
in my eyes
I said “Mine.”

You hated me for that
and I thought it too.

You said ,
“You only get an exciting chase
once.”
I could hardly breathe
I was just part of the landscape
along with drugs and a big glass ashtray
turned upside down.

You sat on a glacier
snorting cocaine
and I quit until I became sober enough
for you to stitch me
together

I should have done it
differently.

--

the bird cried
the ice caps are melting!
the ice caps are melting!
into the sea!
into the sea!

I was aware once
of things that brought me joy
I used to know how to fade like a gradient
into the background of the party
and be happy enough there
the textures of people places and things
adjusting, scooching, scraping in such a way
to make the world a bright light
you could see from space.

I was known once, by a man
who knew my name that no one else did

he asked me
min qalbi? Who is my heart?
in broken Arabic I answered “ana” “I am.” 
ana
min eayni? Who is my eyes?
ana
min habbi? Who is my love?
ana habibi.
min rruhi? Who is my soul?
ana
ana
ana

Then,

You went away, I do not know you.
You disappeared, melted, sunk, drowned
like those ice caps
just as the bird said:
into the sea!
into the sea!

min habbi alan?
min habbi alan?
 
who is my love now?

Tuesday, April 4, 2017

Operation GSD


Today I started physical therapy again. It’s been far too long, and my body has degraded again down to the functional mechanics of an 85 y/o. This year has been discouraging for so many reasons, some of which I am not ready to talk about yet. In time, I will, but it’s not time yet. Suffice it to say that physical ailments and mental health are very closely connected and affect each other greatly. And I still feel like the fixing needed to get my body back is so extreme it feels impossible. Pneumonia really knocked it out of me. I can’t reach my arms up to get a plate off the shelf. The idea of walking a few blocks sounds exhausting to even try. I get mad when I realize I left my phone upstairs and have to retrieve it when I’m already running late and I can’t just jaunt up the stairs.

I am apprehensive. I have hated this body I’m trapped in; it’s been a constant uphill battle that never seems to cease and desist, or even plateau. I’d take a plateau, honestly. But nope, pneumonia and seasonal depression etc. etc. have set me back to square one. Do not pass go, do not collect 100 dollars.

But I’m starting small. Very small. As in, take a deep breath, right now. Do it. Just pause everything, and do it. Done? No? Do it. Close your eyes and do it.

Okay good. We default to exist in such a small amount of breathing space. But there is something cleaning, refreshing, manually calming, that ‘turning the corner’ feeling that happens in that brief moment when you allow yourself to do nothing else but take a deep breath.

So, I’m starting there. Again. And I don’t know how many more times I will start again. But I can. Even if I’m faking it until I actually believe I can.

My life path has been divergent, to put it in one word. And I do struggle with feeling disappointed in myself, and generally not feeling like I exist at all or for any real purpose. Depression is an unruly animal. But I’m starting again. #OperationGSD. aka, Operation Get Shit Done. Whatever it takes. Here we go. Again. Goals, I’m coming for you. #GSD!

I am learning so much about myself and why and how I work (and don't work). I am trying to take every bit of knowledge, every insight, every critique, every hope and dream, every disappointment; and turn it into something beautiful. That's what this means to me. It's not easy. But I hear my Self say: Take a deep breath, right now. Now, get shit done.