Tag Archives: Epilepsy

Personal, Writing

Epil(NaNoWri)epsy Month Thoughts

November is an interesting month for me, personally. I always try the NaNoWriMo thing (never completing, because it’s just not something that works for me but hey it’s fun). But also that it’s also Epilepsy Awareness Month (because that that’s not so fun, but hey, it completes me as the person I now am).

One day, I probably should combine the two. But I don’t know how. Some ideas have popped into my head, but they’ve all come out like both writing a novel or having a seizure – erratic, auric, and confusing. In the meantime I’ll just ramble on this month, working on both with one on haikumixtape and the other perhaps here, perhaps on things that will never see the light of day.

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Poetry, Writing

The Absence Epic, 4

23.

 

“You feel weak, but I still think

you’re the strongest man I’ve –“

it’s dark and I am sitting in bed,

three attacks in two hours

“You’re the bravest –“Shut up,

shut up. This is no daring here

this is primal survival, walking

in the woods of the city making

sure the cars don’t run me over.

“You can do this, you have me – “

no one is enough to fight this,

just me and the absence, anger

the desperation, and my tears

 

24.

 

This is not genetic, there is no curse

tied to the ATCG worth passing on

to a child, in my future, I will hold

scared to death the seizure drops

 

 

The fluids show it is not cancer, no

panic then, you are healthy (sort of)

keep true to your smiles no matter

how you hide them, or slip away

 

 

Photosensitivity free, lucky for you

there is a light at the end of this

tunnel unlike for the rest, but recall

the absence, when it hits, breaks you

 

25.

 

I walk out the building, hood up, monstrous

The homeless of the Tenderloin and I share

a certain shame and resiliency this morning

These streets know not the steps or pattern

of the brain waves hunted by the sensors

married to my head, held in holy bandage

There is no consummation – humiliation,

perhaps — but I want to lay in bed, alone

my head held high in hope of the sign

from on right-brain glitch to nodes,

the heavenly disconnect of my senses

to the tech – one cord, from monitor

to temporal lobe, temporary, lonely

 

26.

 

The talismans are wrapped on

a string around my arm, wrist first,

penitent. Why did this happen?

What ties did I break that made

this condition my faith, my body

its sole temple and priest?

 

To the forearm, and the threads

become tenuous, protective

to the shivers in a blind animism

where all my will would rather

stay with frayed elder strings

than unbound to the seizures

 

The bicep, where there rests icons

misused saints I used to pray to

but stopped – now, I whisper

small phrases to them as auras

move past the shoulder towards

a flux – divine, wicked, unknown

 

27.

 

I will remain the man shaking violently

Even at 90 and the last flicker of light

When my daughter stops calling me

As I see my wife go into the ground

After I see my child’s eye for the first time

Before “I do” leaves my mouth in May

The last time I’m allowed to go to a festival

Tonight, writing this in fear of my future

Despite all the control and safety from pills

 

28.

There is one maxim to learn, after all these battles

when I have hyperventilated into angel’s trumpets

refusing the touches of careful women saving me

from the midnight fear and morning complications

finally facing complexity, embracing my absence

until my body turns into the predictable maelstrom –

Breathe, Just

                         Breathe. You

                                                  Will Weather

                                                                                This Storm

 

29.

 

Yes, there is no particular ending to a seizure

The waking up, the consciousness resumes

and we are once again left in this universe

on fire, white hot or slowly burning lethargic

 

But we will not let the black and blues define

us, we will take the bruises and the pain

as signs that, yes, we are still here, fighting

the ghosts that refuse to let go of our brain

 

And we will push our bodies, just as they do,

until we become heavenly, orbiting, unlimited,

drifting with hope that we will meet each other

 

And I will finally remember all of our names

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Poetry, Writing

The Absence Epic, 3

16.

 

No rest for loud thoughts.
Stay up alone? No, savage
fits destroy my words

 

17.

 

Roses and fire that prick
my fingers and arms

Sight is a luxury slipping
into my ruin on repeat

The ashes, I will not let
them choke me down

It does not have the right
to leave me here, alone

And nobody truly aware
that I am hurting inside,

dragged into a spiral
of thorns and flames
I feel but cannot see

 

18.

 

Let’s go far away where the shivers won’t scare me,

my body reacts at the contact from phantom winds

 

I want to see the bay and the dark sky, the stolen

mix of highways and comfort in masking absence

 

This may be the only road I see out of this trip

where my world is lost when lights become auras

 

19.

 

Triggers create threats, a stream of scattered havoc
springing out from the ether and breaks of emptiness

Triggers bring flames and flames on the walls my hands
are banging against – no burns, only wide-eyed fear

Triggers create memories, displays and a pageant
of frenzies I portray in front of you, my dear

Triggers sit tight, for they live inside and around me
watching for a time and place to grab my hands

 

20.

 

There you are, taking off your dress, a smile
slight yet bit-lip enough it washes cautions
held every time you saw me fall into space
and caressed me in the post-seizure haze

This is the moment I hold you down, hard
onto the sheets and say “Fuck the fear.”
I have touched you there before and loved it
My thoughts, I shut down with a tongue –
a flurry of strokes and moans and I am free

But, in the sex and switched postions It returns.
The damn thing was hidden between the thrusts
and the command “Keep going, don’t stop,”
I follow the wrong gypsy, the cursed one
who puts her spell on me, the impossibility
of an orgasm when my body forgets its place

 

21.

 

All these mind-fires burn what was the old me,
a blaze in the last bonfires of a cold beach

I see, in the inner effigy there is hope left
If I use the ocean – I see it there, the waves
of the new coast calling to me in a new tongue

What is there left to do but to lean back,
let it crash over me, wash the flames away
and ready my mind for the new self, waiting?

 

22.

 

Hi, I am your lungs contracting at rates of complexity
per seconds, blinking faster, your words on remix
Ven aqui, compadre mio this won’t end ‘til you chill,
‘til you die, ‘til the shivers go away happy once they
ate away at all the quiet air you had left in the day

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Poetry

The Absence Epic, 2

9.

 

The zephyr came, blew the breeze into the flame,

the searing halo I cannot put out – it knows me,

how my wrist is held by the hands of petit mal dames

playing tricks, sprinkling embers on my ear and nape

The wind and the fire crown made me a wicker man

made from sticks of an origin that, had I known existed,

I would have thrown into the sea, along with my body,

but the omens never help – they always want a sacrifice

 

10.

 

Too small, the pills fall away under the stove,

My stomach numb, it gnaws and churns

But all I feel are my knees scraping on the tiles,

My arm reaching – clean, dirty, depending on

How my skin reacts, or if my arm will light on fire

I sense them and let the panic subside

They are in my hands and I am safe for now

The slow damage is eating away at me already

The pills are on my desk now – they are already gone

 

 

 

11.

 

An instruction manual –

First, let me go, you know

my struggle and need

no obstacle for the writhing

Second, when I am turned

to the side, hope to god

I remember I can make it

through the next few hours

Third, my heart is a knot

tightening from the absence –

I will loosen it, do not worry,

She will come eventually

 

 

 

 

 

12.

 

There is no water here and I am still drowning,

sound of voices muffled in and out by the wake

I am passing through choppy consciousness

treading thoughts, barely, lying and floating

words between polite dinner and brief liquor

My lungs are filled with panic and swimming

to sure smiles and standing, what my legs

refuse to do, are meters away from rest

 

 

13.

 

I fell on the subway on route to a party

chatting with a woman against a pole

The aura formed the swell in my head,

my body is surfing on the turns of the train

The idea of my location is irrelevant now,

the direction is a hope I do not pass out

She keeps talking, I stammer, I-

-I-

-I-

Wipe out

Here comes the EMTs

 

14.

 

I sank and felt the mind blast

Maybe this would be the last,

Or not, who knows – the tank

Is empty, where I think, grow

fantasies and the average shrinks

 

This crash of faulty brain staggers,

A battle of flash fires on grey matter,

Home to silent pains while I assault the

Absence, until I tire, barely breathing

And then, seething, return to the fray

 

15.

My sick head spills out the boundless ambitions in my dreams

face down, profound and abstract, a thousand years a second

shattered when I am awakened by your attacks. I need sleep,

take in Nyx’s breath and whirl in the night’s missing pieces.

 

I am not alone in the bed – the absence, the complexity

make a trio of nightmares and verges of night terrors

so predictable, I want to snuff them with all my pillows

but they leave, as always, lying to me they won’t come back.

 

I want my dreams unending, and to this day miss its haze.

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Personal

Hey, I’m an Epileptic. Here’s My Story.

My father picked me up in the winter of 2004 from the office where I worked as a telemarketer during my senior year at high school. My boss found me sitting down unconscious against the wall of the bathroom — my last memory was of washing my hands and face.

My mother told me a story about something that happened to me back in the old house in Lima. My late uncle Paco found me standing up behind the couch in the living room, catatonic and ice-cold. He called my mother over, who immediately wrapped me in blankets and rubbed me down. ” In that hour you were staring off into space,”  she said, “I’ve always wondered where your mind was going.” I was two when this occurred, so I don’t remember any of this. I didn’t think there was any relationship  between  the Lima event and  the office one. I know better now. The kink in the right hemisphere of my brain might have made my brain go haywire when I was a toddler. It just took nineteen years to show me what really happened that night in Lima.

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