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.

Monday, March 20, 2017

Spring Equinox: Her


This is a quick piece I wrote last night during my Sunday night writing group. It has not been edited and it is not finished, but as it is Spring Equinox today I figured I would share it anyway. But enough of these apologies. Here.

---

Her legs grow up from underground, her spine is the equator;
Hot and electric,
each vertebrae stacking
and un-stacking as she spreads herself across the globe.
 Her brain stem the core of the world.
The tectonic plates of her shoulders press together
when she’s worried or upset;
relaxing into deep waters when she sleeps.
Each limb is an ecosystem
And she has many;
More than you can count
Each arm emergent and bustling with busy lives
of bees and inchworms, katydids and whales
half of which are dying out
as she watches, giving all of herself but losing it all the same.

It’s a bit morbid, to think of her there- buried in the ground
sprouting trees from acorns fallen into animal carcasses.
But she is not alone. She has the world to care for.
And as a mother, there is nothing else but your offspring,
to offer. Your womb’s handiwork, your baby blues
blinking at the Sun,
gazing upwards from the oceans--

Tuesday, February 21, 2017

You are only one, but you are not the only one.


Life is powerful. It can be
powerfully destructive:
tearing babes from mothers' chests
ripping through dead rain forests like a dragon
breathing fire
sucking dry
the oceans that feed us,
spreading famine of
tears that make us beating hearts;
spilling blood
on unholy ground
as the dying rivers cry
their songs of weariness--

But we
who rise from the ashes 
over and over again, 
dawning like a phoenix flecked with gold
after choking on the dust, after 
breaking every limb; 
climbing the spines of our own backs 
up again
and again
and again
racing our hearts to beat
faster, live longer,
love deeper.
 
We are the beauty of this world. 
We can 
claim that for ourselves and 
be beautiful and free, 
in spite of the slavery.

Wash yourself. Again and again.
Be beautiful.
Build your life
as if it were a work of art.
You fall, get back up. Be brave.
Tell your truth. Live.
This is what beauty is.
And you are a part of it.

Wednesday, February 15, 2017

Superhero

And time goes by, and we are halfway through the second month of 2017. There is much to say about the state of the world, but do not fear, I really don't have the energy to talk about it here. Not my platform.

What I can say, however, is that seasonal affective disorder is real; and has been hitting me pretty hard. With weeks without a single sunbeam to sniff at, the all-consuming grey has a certain way to dampen the soul.

Additionally I just got out of the hospital after spending four days in there for the worst bout of pneumonia that I've had so far. I seem to get it at least once every year, thanks to my GvHD and lung damage, but this one hit me pretty hard. It will be months before I'm back to where I was...which was not great to begin with. So that's hard to take. I'm fatigued and weak and sleepy- but have abs of steel thanks to all the coughing. #blessed

I also dyed my hair (the bits of it that are left: I shaved my head on January 1st) a bright crazy purple yesterday and that is giving me a little lift and life in the 50 Days of Grey. #YOLO (am I now going to end every paragraph with a hashtag? Who can say.)
But in addition to SAD (oh aptly acronym-ed...#CRYING) I'm also realizing that I really owe it to myself and to anyone who might find this blog at any point who can relate so they don't feel alone: let me say it loud and clear: GRAFT VS HOST DISEASE IS THE DEVIL INCARNATE.

Not only have you endured cancer and all that shixxxx that goes along with it; you're stuck with an autoimmune disease that almost nothing is known about and can present in myriad ways from mild/annoying to life-threatening. Just as I am typing this my left hand is starting to spasm; one of my more painful presentations- which also makes it hard to do things...with your muscles. Which is pretty much...everything.

---break to calm hand spasms---

I've also been trying to gain weight to hopefully help with a couple of things:
1) being malnourished is just not good for you. My hair is thinning, and it probably contributes to my muscle spasms.
2) I want to be strong. I need to gain weight but I want to gain muscle and get my flexibility back. But this appears to be a very very V E R Y slow battle where there are more losses than wins.

Just these past two weeks with pneumonia, I lost 6-7 pounds; which, when you weight like 100lbs to start is not good at all. It is hard for me to go up even a short set of stairs. I get winded from my crapass lungs and my leg muscles (if you can call them that. I like to pretend like they are built-in crappy leg warmers) are tired and shaky.

Chronic GvHD is a real thing. Even if no one really knows anything about it. It's real. And it's real hard. It's often invisible; people tell me I'm looking great, etc. because I'm so skinny etc. I know they mean well, but can I just say on the record: let's stop talking about people's weight?!?!?!! I don't need to be told I'm skinny and it doesn't make sense to me that somehow that is culturally appropriate to talk about but the opposite would be incredibly offensive. So let's just stop talking about it. Let's make room for people to love themselves without an "affirmation" from you about their body. #rant.

I struggle every single day with cGvHD. My eyes don't produce tears (something I'm trying to work on, but there's just so many meds...), I have weird skin discoloration/hyper-pigmentation all over my body that makes me look like I'm covered in bruises all the time. Weight loss seems to also be a symptom of cGvHD; for unknown reasons at this time (according to several studies I have read). I know I struggle with appetite and nausea and difficulty swallowing, which probably all play a part to some extent.

HOWEVER there is good news, among the grey days and hospital stays... I've decided to go back to school to pursue an MFA in Directing. I've been looking into several different programs: getting the ball rolling early for fall 2018. It's good to have something to look forward to. #excited

Just trying to remain the superhero of my own story. Which is much much harder than I could have ever anticipated four years ago. I want to remain that strong human who beast-ed through cancer and came back with super powers... but it is getting more and more difficult to stay positive. So, sometimes you just gotta start outside in and dye your hair purple.

#kbye