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What`s It Going to Take?

I asked a group of hydrocephalus warriors what it`s like for them to continue living on their own – physically, emotionally and financially.

I am grateful for the new friends I`ve met online that has helped me out emotionally through the breakthrough post-operation recovery.

“It takes about a year to recover completely physically.”, Joseph Rose

” I don`t know either. I wonder how people go on to living on their own- in their apartments or houses. ⌈ It seems a bit timely to move from brain surgery to full time work⌉  , I reply.

Some people responded to my poll as not realizing that they were struggling emotionally. To my belief, when you are busy trying to recover then maintain a full-time job- you start to distract yourself.

Other responses were  ”  Physically it took about 2 months – i was in the hospital for 2 weeks. Emotionally – didn’t really notice, i just focused on getting back to work. Financially it’s taken about a year so far. The surgery was last July.

and

“It’s a challenge as I had to move into my parents place when my hydro took a decline but I still pay all the bills for my apartment as well with no job”, another hydrowarrior responded. “

It is something least talked about post-surgery. Along my recovery- I hope that I could get in a comfortable place in my life on my own again without living with a ‘boyfriend’ or my parents again. I`m a senior in college now so I am working towards this model campaign for hydrocephalus/writing/and healthcare field to take off somehow.

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Ebook Release

#hydrocephalus · #literature · #published · #writing · confessional · culture · Neuorscience · Poetry · self love · spiritual · Uncategorized · Wellness

Foreboding

It`s like a cold brush of an enemy passing by you on a train

The rain thickens as the fluid thins and soaks up your being

 

It`s like a storm thrust

in the brain

in the same

area

that allows you to think and feel

and breathe

‘and reel in all of the emotions you feel on a daily motion

 

This potion,

see; it`s a treatment plan- not a cure

Its a machine in my head- I mean like fucking literally

 

I`m a cyborg- you put a magnet to control me

so I could control this pen just to write.

#hydrocephalus · #literature · #prose · #published · #writing · breakup · confessional · culture · spiritual · tumblr · Uncategorized · Wellness

What Are Relationships Like Post-Brain Surgery?

Many of us that have had any kind of surgery rarely discuss the effects hydrocephalus has on not only us, but to our relationships.

In one of many ways, hydrocephalus divulges how much people can really take in our condition . One year ago from today I called off my wedding due to my cheating ex-fiance. During this time was the brink of my health problems.

For many other women with hydrocephalus- we struggle with our vanity like “would he love the same if Ii was bald with stitches everywhere?” and other thoughts of “would he eventually leave me?” . These thoughts plague us all of the time but we barely talk about it.

One hydro-warrior stated on my poll ,

” [It`s] tough due to memory loss, depending on how they handle it”- Denise Santillian.

This is true in itself because one person can get irritated when you forget something.

” Last time I had surgery in 2017, I was in a relationship. 2 months after the surgery, I found out he had been cheating on me for half of our 2.5 year relationship. It was my 5th surgery in 31 years. ” -stated anonymously.

So far, my step-family has made it their prerogative to understand my condition and to understand it as solely a condition not a disease.

Globally, this condition isn`t known but in many cases people have defined it as a disease. Studies show that there isn`t enough evidence that shows genetic relativity.

Although, there has been a study conducted showing that hydrocephalus might be caused by genetic mutations. Click here Yale News .

On the Hydro Women Talk About Anything Group on Facebook HydroWomen , many other women responded to this poll. On the upside, many have found their love of their lives to be quite supportive.

“My husband is my best friend and my rock! I met him 1 month after I had a shunt revision in 2009. I had most of my hair gone and he wanted to know why. When he listened and asked question after question and didn’t run I knew he was the one. We’ve been married for 8 years and he has my back and goes to every appointment with me. He actually switched to 3rd shift to go to every appointment and sacrifices a lot of sleep to do so. I have the best!” – Julie Hayes

and another brave hydrowarrior said something that really stuck with me

“You try your best to find someone you know will always be there holding your hand when you wake up in[ ICU]…. and that thinks you’re still pretty when you’re bald.” – Trish Bertlin

This is granted, many of us want to be with someone that loves our soul, not just our bodies.

#hydrocephalus · #literature · #prose · #published · #writing · Beauty · breakup · confessional · Feminism · Health · humanity · Love · Neuorscience · Poetry · self love · spiritual

The Catalyst

There I go again

Blaming myself for being down for years

It’s a reprisal

Give me blood, give me crosses

As I climb over dry earth

And watery lies

Just to give you my love

And never eat anything in return

I traveled, cast down from heaven

On broken knees

To be your greatful damsel,

My dignity- worth only pennies at the time

Can now birth into a new light

As I represent a holy, grail with a drowning childhood

They didn’t believe me and Alice

As we swirled through these holes by our lonesome

This brain surgery has drained me

Even of old blood.

#hydrocephalus · #literature · #prose · #published · #writing · Beauty · confessional · Feminism · Health · humanity · instagram · Love · Neuorscience · Poetry · self love · spiritual · travel · Wellness

Screams of Dead Flowers

God might,

travel country to stars

in spite of lost hope for humanity

we give curses

yet we see light every morning

Helios` burning glare

gives me hope

that it won`t take too long

to find your love

God might even laugh

when I hold myself

imagining that it`s you

It`s a shame I even love this hard

but it`s pleasing to torture myself thinking you even exist

God might continue pumping my heart full of His blood

with his clear fist

sinking in my throat

to help me write words I don`t even breathe

my muse gives birth

she is the dai of all of these dead flowers

from whince seven-to now a woman

She is the Demeter of lost tribes

the gift of bearing fruit even in this generation of lies

My wicker basket is the only baby I hope to place,

this hydrocephalus is my price for entering that girl`s womb

that girl is my mother , she doesnt even hear me - shes stuck in limbo

blaming me for her failures

And I hope my future daughters won`t breathe the same air as I

the air of strife, misfortune,

greed, weakness,

pain,

lost plains,

and grieving latitudes.

I`ve documented this realm too long, my sister may hate me forever,

as if I`ve given her life

All my choices- It`s all I can grip

without losing sight

my petals were ruined too you know?

What choice did I keep to merit lost touch?

The water I crave, is ye greatness of a man`s sweat when-in utero- my words fill up like that blood bag of the wordless stone again

I love him- when I bat my eye

and dai him a reason to not love me at all

as -it feels good to blow his mind

but as above, it kills my psyche to love him all over again

Verissmiliitude,

your voice gives me wings

as I seek Gods under all this water,

I sail only in my childhood when I didn`t understand what soil is

The only awakening is the broken stem between too lively leaves.

#hydrocephalus · #literature · #prose · #published · #writing · confessional · culture · Feminism · Health · humanity · instagram · Love · music · Poetry · self love · spiritual · Wellness

Paperclip- A Memoir Confession

It’s almost like losing a paperclip. Without that paper clip, all of your papers will fly away or go missing. For years my paper clip was sex, booze and smoking.

Now I don’t have either. Being a Christian is hard because now km trying to replace this emptiness inside me with God’s light. Jesus Christ says that all things are new through Him. Then what am I to Him now? I want to know. Because I can’t keep going like this. Sleepless nights, but tired. Too horny to care or not feeling anything at all. I laugh at things that aren’t funny because I’m trying to make sense of what I’ve made for myself. I know people say shit comes together with time. Well fuck, I’ll be 24 by the end of this year. How much time do I need? Til I’m 30?50?80?

Hopefully God allows me to live that long so I could tell my grandchildren how I made it through all the he’ll. How I became a best selling author, how I’ve lead many children to have better lives. Yeh, let that be my testimony God.

Everything is tempting and fleshly.
I read in 1 Corinthians that this body is called a “tent” .I crave being in Heaven for this isn’t it down here. It’s all boiling hot ready to burst.