Being Brave

What does it mean to be brave?

Is it the steel of nerve, 

the calm of the knight as his squire straps on his armor?

The breath whooshing out 

as the swimmer takes her mark?

Perhaps it is going to take a board exam

even if you never feel ready,

or taking the blow from a man 

three times your size and standing up again.

But tomorrow it is none of those things--

it is not war paint, or chants, 

great speeches, or montages. 

There will be no shaky fingers, or quivering lips, no rapid breaths or anticipation, or rising swell of courage

and will that breaks into a howl of bloodlust. 

There is no fighting, 

no kicking of ass.  No.  

I have fought this fight before,

and I know there is no winning.

Tomorrow will come punishing floods,

Unforgiving and unrelenting, 

pouring into my body and into my bones.

And even with my best preparation 

it will pound and tear through me until 

I lay limp, 

my being shaken out of me 

like flour through a sieve.

I know this, as I lay down tonight,

and I will rise to meet it,

to survive it in the morning.

March 30, 2013

What it feels like to live with cyclothymia--to be read aloud

I know it’s here.  I do not know from where it came though we have met before once.  That time it cut out my heart and left me for dead.  It did not know my secret.  (I do not need my heart to live.)  Now I am older so I know it is here.  It already flooded my world up to my waist.  It climbs quickly, silently, disguised as other things--school, work, seasonal affective disorder.  If I could just work harder, work faster--but I can't, there's smoke pouring from my brain, singing my eyebrows.  I push my hands out and feel them sink into the ooze.  It carries me—suspended—there is no surface.  That burn up my nostrils into my mind, down my throat into my chest.  I am there forever.  I will lose consciousness soon.  I don’t know why but I brace my hands on my knees and begin to cry.

And then it’s gone and all I know in the end is that I've wrestled with something primitive and primordial and I did not lose though I did not win.  It’s not so impressive in the light.  We laying there, me and this thing that is older than time itself, exhausted, bruised, bloodied, covered in the muck and mire and shit of the night, helplessly bare in the gray morning, painfully gulping thin air.  I do not know its name or its face—it is always changing. 

We look at the handprints on each other's necks, hating each other, but without enough strength to do anything--not even to glare--knowing at the same time that it's the most intimate interaction we've ever had.  I close my eyes to rest and then remember it’s still there so I open them again, slowly, as if the very motion of opening my eyelids is in itself a lover's recognition, a salute to a worthy opponent.  The beast knows this, and it needs reprieve too, so it gathers itself, like tar reverse flowing back into the abyss of my being, taking with it every disgusting, perverse, mutated part of my world.  My face, my neck, the insides of my ears are raw and burning from the salty delta that overflowed from inside my skull.  I am too tired to clean myself so I lay there, miserable, in the nowhere in-between state. 

Sleep comes, stealing inside of me while I lay there too weak to fight.  The siren is silent.  There is no one left to sound it.  And sleep smiles at me, a smile that says she loves me more than anyone else, so even though I find her repulsive (that cloying, annoying, persistent, pathetically dull wench that I normally deflect), I close my eyes and let her touch me.  She is second best.  She will never awe and set my mind on fire, but she is there.  She is persistent.  She is consistent.  She is gentle. She takes off my armor, kisses my wounds, and feeds me numbing draft.  “Numbing draft?” I think, “Silly girl.  I cannot find my feelings.”  “I know,” she says, “I know.”  Unthanked wench.  I owe her.  More than that, I need her.  I know she will keep me safe, so I let her kiss me.  I let her cover me with her body, and as she draws her arms close around my shoulders I wrap myself in the comforting knowledge that I am still alive and I will stay alive till the next time we meet and make fierce battle again.

Phuong

If you ever have to choose between
saving the world or saving me,
save the world.

It is winter 2007, and the dorm is quiet
as we lay in bed in that transient hour
when the college has ground to a stop,
for one precious hour before the gears churn again,
like a coal train engine in the yard, groaning
to a halt with steam mingling with the mist.
It is the only time we have for each other
when philosophy and esoteric percolations
bubble up from the depths of muddled academia.
Time to think, when our brains have finally
stopped gasping for time, and we can think
about if we can live with our lives--

If we are still becoming the people we hoped to.
We are lucky to have this hour while
the halls are split by gashes of light under
doors and spilling around curtains by scattered students
frantically toiling into the night.

Uh huh, she says, half-asleep, tucked under my arm.

And if you have to choose between
saving you or saving me,
save yourself.
I know it's a little macabre, but just in case
I want you to know,
this is what I want you to do--
I don't want to die, but I am ready--
you're not.  I've got God.  I'm saved.  You're not.
Does that make sense?

Yeah.  It does, she says, slightly more awake.

I wish you knew God--

Babe, no offense, but, I've seen
how you've struggled with your god,
and I never want to know him.
I can't understand why your god would let
the things that have happened to you, happen to you.
Does that make sense?

Yeah.  It does, I say.

It is summer 2015, and the execution date is set.
I lay next to her, listening to her gently snore.
I am different now, older, slower,
living without that borderline mania
that forced me to attack all things in life with rabid ferocity
until I collapsed--
And I have completely--
now I simply shuffle
from battle to battle.
My limbs betray me--
they shake with fatigue--
My mind is not as quick or sharp,
although its depth has increased.
And my heart, my heart races with disease,
instead of the strong, slow, steady beat of youth.

I say softly, nose against nose,
When I am gone, save yourself.

David

Isn't it strange that one would grieve less for hair 

than one did for a childhood love, 

and fear death less than living?
It took me three years before I realized
I was confusing an opportunity to gain life experience
with a soul mate.

Day 15

They tell you that your hair will "thin."
They don't know when it will happen, but it will.
It doesn't for two weeks, and you think you're clear
you think you have time.
You think maybe you might finally be the exception.

Then it begins, slightly at first
a few extra strands in the hair catch.
You wake up and there is a carpet of hair
across your pillow, across the sheets
down your chest and back.

No one tells you how,
even though you thought yourself prepared,
when every move you make sends strands
pouring like fresh mowed grass off of your body--
and even if you don't, you feel each strand as it comes loose
with a little tingle, root giving away under the sagging tension,
and falls, spontaneously, like leaves on a still autumn morning,
brushing your skin, mocking you with gentle tickles,
like a fingernail drawn, barely touching you,
a reminder, as they shed without ceasing,
at your helplessness--
and when you finally do get up,
the gathered layer rustles off you as if you were Rip Van Winkle,
waking up from under 19 years of leaves--

You will hyperventilate.
You will not know if it is better to lay statuesque,
and hope that maybe there will be something left tomorrow,
or to rip it all out like plucking a chicken,
and pray it won't be patchy,
pray you won't be left with a few stubborn strands--
dry branches off a dead tree, hollow to the core.

When you finally are brave enough
to shower, the hair will cling between your fingers.
You will be stuck in this endless cycle of
rinsing your hair, and rinsing your hands.
It will be caught on your neck,
stick in the soap on your face, under your breasts,
cling to your legs, you bend to clean them,
what hair you have left falls into your eyes,
you push it back, stand up, look at your hand,
and there is hair between your fingers again.

No one told you that you will
walk the edge of hysteria trying to clean the tub,
after sobbing silently into the shower stream
until the hot water ran cold, and you gave up
on ever picking the stray strands off your body.
They didn't tell you, it embeds in your wash cloth,
and circles the drain catcher like a fur collar.

And when you finally step
out of the tub onto the tile,
the only thing protecting you from yourself
is the veil of steam
and condensation on the mirror.

Washing My Hair

Washing My Hair

Washing my hair the night before

my first chemo treatment--

I dip my hair below the faucet, upside down

and let the water run from nape over

short tresses, waving like kelp between rocks at low tide

chopped short with disregard mere months before

as mere annoyance, to save time for studies.

My mother is crying, tears dripping 

into the suds as she kneads the soap into my scalp

as she did when I was young and had been foolhardy

jumping off the stairs and into a cast.

It is just hair.  I tell her.  It is just hair,

and yet it is so much more.

They are the strands of my life, 

days, minutes, seconds

lives that could be, futures that could have been

dying from the roots, coming loose from their beds, unborn

slipping through my fingers

with only the hope that some may

have the opportunity to spring up in their place.

2:12 a.m.

Staring at my Word cursor.
Human Resources.
End of a chapter.
Leaving my first adult job.
How to compose a resignation letter?
One to my boss--one to HR?
Empty my locker.
Have to get my stethoscope back.
Have to return my keys.

Must complete before Monday.

I'm terrified.

Motherhood, Love, and the Ethics of Bearing Life

In 6 hours I'm getting up to go to a fertility clinic for a consult on egg banking options before I start chemotherapy. The clinic is at UIC--where I hope(d) to complete my BSN.  I wonder what it will feel like to walk on the campus, imagine an alternate life where I'm not sick, not thinking about surviving to the new year, facing questions about the viability of my haploids, how committed I was to cutting open my abdomen and scooping out an ovary on the off chance that I decide to have a child of my own one day.  Is it even  ethical or moral to have a relationship with anyone, to get married, or what about not doing either but having a child anyway, when I know the risks of relapse are so high, and the survival rates so low?

Dear Reader:

I remember watching "A Walk to Remember" in high school and thinking to myself: "God, a movie about a girl dying from cancer--how cliche." (Ok fine, I totally bawled my eyes out. It was high school. There were hormones and Shane West. Come on, give me a break.) Yet here I am, writing about myself.

I have cancer.

I have Peripheral T-Cell Lymphoma with "immunohistochemical stains that show the infiltrate is positive for CD3, CD4, CD5, CD7, and CD8, but negative for CD30, CD138, CD34, CD56, TDT, and in-situ hybridization for EBV are negative" to be exact. This probably doesn't mean much to the non-medical person, but basically, it's rare, so there isn't a lot of research on treatment because there aren't large populations to test on. Because of this, doctors use traditional treatments for other cancers--kind of a "Do you have a better idea? No? Ok then." situation. This means the survival rate is pretty slim even with optimal conditions.

I know all these things--I'm a nurse, I'm practical. It's almost my job to be a pessimist so that I can anticipate the worst case scenario. Some people think this is negative chi. I think that anticipating the worst helps me to prepare for what my patients--or in this case, I and the people in my life--may need.

I get the numbers are bad. So, if this blog suddenly stops, I guess you know what that means, but until then, who needs a Shane West? I'll build my own fucking telescope.

Love,

Lydia