You saw me, and I loved you for that.

young adult cancer survivorship

//from Unspoken Ink Winter Session//

the pain of your exit
wells up inside me like
a hunger, a parasitic heaviness,
like the cancer that
opened my door to you.

You saw me,
not this body
wracked with pain
emaciated, person-less
my body decapitated from my soul;

You saw me.

In my darkest hour, crying, despondent
offering nothing,
Depression holding me
like a ravenous python.

You saw me.

In my fragile moments of levity
when you read Steinbeck aloud
our laughter running all the way
from our eyes down to our chins-
those precious moments
I felt alive again.
And then we’d sit silently
in just our own presence;
the world too full to talk about.

You saw me

in my year of isolation
and quarantine
from the world
in my year of isolation
and quarantine
from my Self
from joy, from any worldly contribution
You were there, you didn’t care
I was a shell of myself.

You saw me.
And I loved you for that.

I had never felt more loved
more beautiful
more wholly understood-

But something happened,
You left.

You just left.

It’s been three years
and it still
grows like a tumor in my stomach;
your absence weighing
more than I can carry some days.

Paper Chain

writing group

I cleaned out my room today, getting rid of old clothes
most of which are too big for me now
as I’ve shrunk to a skeletal version of myself.
Gathering under my bed along with old chapsticks
and safety pins and crumpled receipts
were several hospital bracelets.

I’ve been saving them for over three years now,
hoping to make them mean something at the end of this-
a bracelet chain so I can count down the days
to the 5 year word:
CURE
or an art piece displaying the excessive usage of labels and
an ID number I’ll never forget: 612212
or proof for the future me that this really did happen
or a finish line I can break through–

I find them everywhere:
in drawers, coat pockets, the bottom of my purse and car
folded in my wallet
and under my bed
I have probably 200 of them

I plan to make something out of them eventually
I have a one-woman show in the works and I’ve been taking
copious notes of all the things that have happened
“ice bag boobs” after the highest fever my nurse had ever seen
“7 liters”: – my record-breaking peeing in a single day
“No, it wasn’t breast cancer, I just have really small boobs”
I don’t even need to explain that one.

There’s a lot of comedy, truly. And there’s a lot of white.
white room, white bandages
200 white stamps
200 white plastic wishes and fears
200+ white handfuls of foamed Purell

I plan to make something out of them
even if it is just a bonfire
to simultaneously burn away Cancer Girl
and offer up incense to the sky
Praise you stars, that I am still here
and I can still make things burn.

image via

Unspoken Ink: Baby Joker

writing group

This is from last week’s Unspoken Ink Writing group; unedited.  The prompt that was given was the above photo and the words, “crazy game of poker.”

And he sits there with his baby face,

smile pasted on and frozen forever like a doll in a case

with his polka dot bonnet

and flaming cheeks holding a toy just out of reach…

Death.

I often picture him as an old man wagging a grey finger

slowly lifting it to his thin mouth

and dust falling from his hairline lip with a crumbling shhh

but then he’s gone, like the Ghost of Christmas Past

the beeping machines snap into focus

and suddenly he appears again

now a toddler holding candy

The King and Queen know nothing, because the Joker

has everything in his hands

a screaming baby Death, screaming into the past present and future

and screaming his baby laugh in your face as your life goes to shit-

I think it’s wildly unfair;

to warp the tender charm of a fresh baby’s cheeks

But his eyes tell the whole thing- curved and dark

like a black hole peeping through two crescents

his little baby feet in little baby shoes

but those eyes

don’t be fooled by his games

or the toadstools at his feet

or the candy in his fists

I’ve grown to know you, the forms you take

and the many more that will follow:

a young man getting hit in the sidewalk by a mother of two running a red light

he’s in “I don’t love you anymore”

“I never loved you”

and sometimes in your own voice:

“I could never love you”

Penrose Waltz

grief

I wrote this during Unspoken Ink earlier this year. It has not been edited- I believe there is a certain quality about something that just emerges from a few minutes of unadulterated writing. I’ve been thinking a lot on the process of getting healthy and becoming happy and content- and this piece floated back to my mind today. I feel like I am constantly shifting full spheres of grieving, celebration, growing, breaking, healing, breaking again, crying, laughing, sadness and grieving and laughing. It is a cycle, but not one that makes any logical sense.

—

Well first off, it doesn’t go:

Grieving, Healing, Growing.

like it was a staircase;

each step just needing to be climbed; easy

as eating cake on the porch while the summer gives way

to Fall. No,

 

It’s all over the god damn place

like a tantrum of a five-year-old

stronger than it was at two,

still unable to be consoled.

 

If it resembled a staircase

it could only be the Penrose steps

going on an on forever amen

and once more now:

when you’ve reached the top, at last!

You’re at the bottom again

and tired as hell.

 

No, it’s more like the cycle of water

merging between states of being

over and over forever amen.

 

First you’re Liquid

then something burns you so bad you turn Mist

and ascend to join the other clouds and it’s

cool and warm rubbing noses up there until

there’s too much of all of us until

we gather up our two oxygens and

plummet to earth again.

 

There is no one way to be.

There is no one form to take;

because once you’re down here (again)

you might travel the full body of a mammal

then wash the wings of a bird

then reflect the baby face of Narcissus

then harden for a season

waiting, breathless,

to do it all over again.

 

So, no, it’s not 1, 2, 3.

It’s the waltz. but all fucked up.

1 2 3 – 1 2 1 – 1 1 1 – 3 2 1 – 1 3 1

the Penrose waltz:

dancing forever, making tiny strides

here and back, up and down, grief and victory

again and

again and

again

 

To read more of the posts from our Unspoken Ink: Young Adult Cancer Creative Writing Group, go here.

Three Years Of Cancer Comedy

No, it wasn’t breast cancer, I just have small boobs.

After sizing me up, a man I just met had asked if it was breast cancer. And though I didn’t answer “No I just have small boobs” out loud, I most definitely said it in my head with uproarious laughter. (He was a nice man, which is why I laughed. Uproariously.)

Here’s the quick lowdown to satiate that little voyeuristic desire to know the details while simultaneously feeling a bit guilty that you want to know about someone’s cancer… it’s ok, we all do it. Cancer comes in so many forms (sadly), and even people with the same kind of cancer go through different treatments and deal with different complications along the way, so I’ll just give a quick summary.

Rare blood cancer: Chronic Myelomonocytic Leukemia type 2 (CMML-2). Diagnosed May 2013. I was 24 and otherwise completely healthy. It was found randomly. I did outpatient chemo for three months then month-long inpatient induction chemo to put me in remission, then a week off, then another month inpatient transplant-prep chemo to kill all my bone marrow, then a very anti-climatic bag of pink stem cells from an unknown donor was hung and dripped into my body and saved my life, NBD. After that I spent about a year in quarantine from the world in a little apartment in Salem, MA with my youngest sister (who was my caregiver, at 20 years old!) as my new immune system grew like a little, often treacherous, baby.

And that’s the Reader’s Digest version #ftw. I am now 27 and still in remission, and my immune system is about 2 1/2 years old. Obviously there’s tons of details left out of that fly-by (I’m looking at you, rando meningitis, the fact that I now have Y chromosomes in my blood, ongoing depression 4ever and endless hours of Netflix) but I’m sure I’ll address different things as I continue to write for Lacuna Loft. For anyone interested, I have kept a blog since I was diagnosed and you are welcome to peruse it if you’d like here.

The picture featured above was after my first round of immunizations (I have to get all the vaccines again you got as a kid! Brandy-spankin’ new lil baby over here.) in my new pair of pants that I bought to celebrate my donor, who most likely lives in the UK. You can see that cool chemo-hair fuzz coming in- I had recently shaved half of my head again because I live on the EDGE.

When I’m not a cancer patient, I am a writer, theatre artist, and teacher. I’m a founder and the executive director of a small immersive theatre company on the North Shore of MA. I have a degree in theatre arts and philosophy, and I equally love healthy food and baking (I do not view these as mutually exclusive, but I’m certainly not against living a balanced life because cookies). It has taken me a long-ass time to get to where I am after being told I had leukemia, and even still I find myself wishing I was further along. I am still unable to work full-time, because I fatigue easily and I deal with intense muscle spasms caused by Chronic Graft vs Host Disease (GvHD, via transplant of a donor immune system) when I over-do it. This May it will be three years since I was diagnosed, and like so many things, it seems both that I’ve lived an eternal lifetime and yet shockingly fast for it to already be three years.

Ever since being diagnosed I have tried my best to keep viewing my life as a comedy rather than a tragedy–though anyone who has followed my blog can vouch that I have definitely had my share of time spent wondering what kind of sick dark comedy this is. Other times I cannot laugh at all, and terror engulfs my being and I just have to sit with that darkness.

But I’ve kept a running list of memories and things (literally, it’s a list I keep and add to on my phone) that will eventually become a one-woman (comedy) show about this whole thing, and I even have a title picked out: My Million Dollar Haircut (title copyright of Bekah Jordan, 2013. …haha.). It will certainly take a hard look at the real sh*t-show called having cancer (especially as a young adult), but also guys: there’s SO MUCH COMEDIC MATERIAL. Take for example, the breast cancer inquiry. There are so many more instances of hilarity that I have come across, lived through, seen, and quite frankly: loved–and though I don’t think that this is the only way to deal with hard times, it has been the way I’ve dealt with it. I hope that reading my musings will allow you to find and treasure those little “breast cancer?” nuggets in your own stories and maybe they will make you crack a hint of a smile on the grimmest of days; which happen quite frequently, please don’t get me wrong.

I endeavor to not shy away from dealing with and talking about the hard stuff that a life-threatening illness throws into the cake mix as you’re baking into adulthood. You’re figuring out who you are, the kind of person you want to be in this world, and what you want to do during your time on this flying piece of space rock. And cancer is opening that oven, pouring in acid and slamming the door. Your life-cake (ha I’m already making up words) sinks in the middle and comes out all wrong and is a dangerous thing to hold. Cancer just sucks out the marrow of life (quite literally in my case…) and we need to find a way to build it back up, to find that substance and meaning again. Somehow make a glorious life-cake from the sunken, poisoned, and probably burnt mess cancer left us with.

And here I am, almost three years in, saying to you that it has made me a better person. I do believe that it has (even if it seems a cliched statement), but some (most. …all?) days I wish I could have come around to the lessons I’ve learned in ANY other way. But we rarely get to choose our lessons or how we learn them, I suppose.

I will wrap up my first post with a poem from my lifeblood poet, Rainer Maria Rilke, who has been a constant companion through the last few years.

God speaks to each of us as he makes us,
then walks with us silently out of the night.

These are the words we dimly hear:

You, sent out beyond your recall,
go to the limits of your longing.
Embody me.

Flare up like flame
and make big shadows I can move in.

Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.

Nearby is the country they call life.
You will know it by its seriousness.

Give me your hand.

One specific line from this poem has been a source of incredible, undying strength for me in dealing with all that life has to offer, the wonder and the horror:

Let everything happen to you: beauty and terror. Just keep going.

Welcome Bekah!

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Bekah!

—

Bekah is a writer, designer, and theatre maker who has a knack from not following the rules. She hails from the North Shore of Boston, MA. At 24 in 2013 she was diagnosed with a rare form of leukemia called CMML-2, and received a life-saving stem-cell transplant from an unrelated donor in September of 2013. For 11 months following the transplant she could be found living in quarantine from the world in her small apartment in Salem, MA with her youngest sister as her caregiver and best friend.

Fast forward to now: living a life in recovery can seem unending. But constantly searching for Beauty inside of a world most definitely tainted with Terror provides a profound launching point from which to go and live a second chance at life. As the saint-poet Rilke wrote at the tender age of his early 30s: “Let everything happen to you, beauty and terror. Just keep going. No feeling is final.” This continues to be her mantra to this day.