#hydrocephalus · #literature · #prose · #published · #writing · confessional · culture

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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#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 · 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.

#literature · #prose · #published · #writing · Beauty · confessional · Love · Poetry · spiritual · Uncategorized · Wellness

Coelacanth : A Short Story

Coelacanth

A Short Story by Imani “Clio” Lang

Artist: Jake Overton

May 19, 2018

 

 

I only give pieces of myself,

Because a hole has become a part of me,

Located at the seams of my torso-

No many can ever know what my anticipation craves…

Anticipation wears many clothes,

She wears black whenever she faces a new day; a new person; a new challenge

She wears red whenever she thinks she`s in love or in distress

She dresses in white almost never because humanity has never known its purest shape

Except when her back is touching the porcelain corners of the bathtub

And the sun hurts her eyes when she breathes,

She listens to blood dripping down her legs because it`s the only thing that can tell the truth

“These scars? I think that they add character”, she says to her captor.

If only she could rest in paradise, she pleads to herself.

“This is paradise. This is all that`s left”, he reads her mind.

Then he takes her other leg off…..

“Thank you for doing this”, she says to him even though he didn`t respond to her previous statement.

“Why? Why thank me?”, he scoffs at her while replacing her right leg with the mechanical leg. She doesn`t dare look down for she fears she would see her femur bone exposed. His name is Gael but his friends call him Acid. He`s a doctor that was sued for medical malpractice then he disappeared off the face of the earth.

“What made you want to do this kind of work? You are so skilled with the anatomy of the body that you could really change people`s lives”, Ginger replied.

Acid pauses for a minute to look at her with a few dots of blood scattered on his face. It surprisingly highlighted the blue octaves around his irises when he looked directly at her. His hair was black, like a violet black underneath the yellow hue of the single light above them so he could see exactly where else to cut her. He slowly kneels out of the chair next to her and rubs wipes the sweat off her brows.

“Soon you will be whole again. This is what I was created to do. Make people new again, but the world isn`t ready for it yet”.

Ginger slowly turns her head to the right to face him and says, “What do you mean?”

“Before my wife died, we find out that she had lung cancer. I found an ancient way to save her by replacing her lungs with that of a coelacanth. An exonerated species of a fish that could replace their vestigial lung with fat if that lung ever dies. There was a way to evolve her white blood cells with that of the fish.

“I found a fucking way to fight lung cancer, but the board never agreed to it. So, they fired me.

They even tried to kill me”.

The term ‘they’ was referencing the higher authorities of the government controlling medical procedures. While listening, Ginger slowly loses her energy and starts passing in and out of sleep. Gael immediately gets her some water. The coldness from the water woke her up as it touches her lips. https://www.nbcnews.com/science/weird-science/ancient-human-size-fish-breathed-lungs-n428416

“You can`t move your new leg now but you will be able to tomorrow. Its called a strata series. I had it made in Russia when I first started experimenting. You will be okay now. “

Ginger smiled lightly.

“Will I be free? Tomorrow, will you let me go?”, she asked him with sincere hope and tears running down her cheeks from both pain of her leg and fear in her heart that her family will never see her again. Gael doesn`t answer her but he tucks a lock of her brown hair behind her ear.

“I will always be with you darling. You remind me so much of Raina. The way your eyes look when facing the sun, when you sleep, when you were dancing that one night at Savanna.”

He was talking about the night he first saw her. She captivated him with how she sang with her band called Amoeba.   Watching her and how she lived became a recurrence with him. She attended University of Columbia as a freshman studying physics and that`s where Gael started watching her for six months. Even her Facebook posts, the times of when she got home from school and when she was hanging out with her friends.

Ginger breathed a coarse breath with blood trickling down her cheek. Gael was tidying up the surgical area and started mopping the floor with bleach. The warehouse was wide, and it lay in a basement corridor that was located under his house or his confinement per se. For years Gael has witnessed how the human body works when experimenting on his victims. Ginger wasn`t a victim. You see; Ginger wanted to die. Which made the perfect experiment for Gael.

Her parents were getting divorced around the time her depression hit her the hardest. Gael had found her standing on top of the University roof from which he followed her to. The roof was always abandoned, and Ginger would visit it often to write her songs. It was her secret place.

When Gael saw her from behind the door on the rooftop, he immediately rushed out to talk her out of it.

“No! You don`t want to do that. Don`t step off that ledge! Life is too precious”, he yelled at her.

“Why not? Everyone hates me. My parents are splitting up and now I have peripheral artery disease. My parents are too busy thinking about themselves and don`t even notice me anymore”.

“You have a lot to live for Ginger. You can`t give up now”, Gael pleaded with a coarse tone.

“How do you know my name?”, she turned and looked at him with her eye brows furrowed. No one was outside, and the sun was setting so basically everyone was in their dorms already.

“Wh-what if I told you that you can have a brand-new life? Outside of all this chaos. Having to go to school, having to impress boys to date. Fuck all of that, I can build you a whole new world”.

The wind is picking up and his black hair covers his glasses. Ginger remains silent with a weird look on her face while sniffling.

“You sound like a mad man”, she chuckles then says, “There`s no such thing as a brand-new world. Only this reality”. Her right leg barely lifts off the ledge to jump then Gael catches her mid -air. They both fall backwards, and she writhes and starts to scream.

“Let me go! Let me fucking go you fucking freak!”, she cries uncontrollably.

“I`m trying to save you, you crazy woman!”, he covers her mouth hard. So hard that she can`t catch her breath then she stops moving altogether right there on the ground in his arms. He catches his breath a few moments while taking in the sweet smell of her hair as he slowly stands up then lifts her up in his arms and into the night they went.

On the first night of the confinement, Ginger woke up and then started screaming to get out of there. It was one of the most terrifying nights of her life. Gael brought her food and anything she wanted but he just wouldn`t let her go.

“So, you wanted to die, huh? Now you must tell me why on earth would you want to live!” he stormed up the stairs back to the kitchen while closing the door.

“Let me out of here! It`s not your right to decide who lives or dies”, she yells as he slams the door shunt. She cried herself to sleep for weeks, but sometimes Gael would come and talk to her. He listened to her and took care of her. The room where she lay in was filled with his wife`s memories and pictures of his medical certificates over the course of ten years. She eventually gave up on trying to break out of her imprisonment because he had made her feel comfortable in it. Oddly enough, cognitive behavioral therapy suited her and provided relief from the outside influences of life.

Some days, days in which he called them her “free days”, she would practice the flute and write poems while he prepared meals for her. He wouldn`t let her do anything other than artistry. He didn’t trust her around knives. At least yet.

Of course, phones didn`t exist but she knew that her family would go to the ends of the earth to find her. There wasn`t TV or any loud noises in the house. Occasionally he would let her look outside, but she always wore a five-foot chain that was far enough for her to maneuver to the bathroom, her room or the living room. The house was in some hills but by the time it was night- she was confined in the basement.

Over the course of time she started to appreciate who he really was. He didn`t even look bad; he was just an average looking guy in his late thirties. No one would ever peg him for the genius he really was.

Fast forward three months, Ginger had finally accepted the fact that she would probably die.

“You will never die. As humans, we fight time more than we think. We`re always causing war and misfortune for ourselves when really; the inevitable enemy is time”, he had said after reading her mind again. He puts the mop on the wall and then puts his hands under her arms out of the tub. He then carries her up the stairs to his room where she can recover. He takes her shirt off and then washes her with a rag. Propped up with a pillow in total comfort, she falls asleep.

 

“Now, the second part of this experiment starts today”.

On the table he straps her down while connecting all codes from his computer to the machine wrapped around her head called a halo system that sends radar from her brain to his brain.

“After this I don`t want to do this anymore. I want to get out of here, so we don`t have to hide behind these walls any longer”, she said to while he held her hand and smiled at her. He barely smiles at anyone, but he can`t help not to with her. He leans toward her to kiss her diligently. Ginger smiles and closes her eyes as her favorite music by Layla Frost turns on. Then:

Lights out.

——————————————————————————————————————————————

Gael stopped her heart while transferring brain stem data from the computer to her system so that her neurons and dendrites would cooperate with the new cells. Her mechanical leg was already healed so all she needed was the rest of the codes of his brain to connect and then she could be whole again. New again.

The computer makes a series of noises as the codes work through the wires connected to her brain. There is only one minute to transfer from his codes that he inputted from his brain to hers before she dies without ever having the chance to come back. Gael has the resuscitation machine in hand, but the computer is taking too long. He quickly clears the screen by pressing enter. His alarm on his phone starts ticking signaling that he has ran out of time.

Cursing to himself, he dislodges the chords and resuscitates her. She didn`t wake up. He resuscitates her the second time and she still didn`t wake up. One last time, his face is red and sweat is pouring from his face as he tries to bring her back to her flesh.

One last hit with the resuscitator and still nothing.

“And here I thought I found the one”. Gael weeps next to her as he kisses her repeatedly “Wake up! Wake up!”, he lightly taps her face hoping she would come to but to no avail. He turns the computers off and shuts the system down. Standing there for a minute he takes his glasses off and thinks to himself, I thought I found the one’.

The sun outside starts to come up and the bright light shines on the chandelier above them. Gael holds Ginger`s hand while sobbing.

“I am the one”, said her small voice. The words barely dripped from her lips as she opened her eyes and wriggled her index finger in his hand.

“Oh My God! It worked.”, he looks her up and down in disbelief. “You`re alive”. In truth she was. This time she was a different person. Her senses were twice as much than before. She slowly lifted her head while Gael cries in amazement of her breakthrough. “Help me up”, she whispered. Gael releases the halo system from her crown.

Her legs were both chromium now and her chest felt like it was on fire from the constant punching of the resuscitator. Ginger`s hair was drenched in sweat as her body tried to regain energy that was lost. Gel flushed more saline into the IV in her left arm, so she could gain more strength.

The coelacanth leg twitches for the first time; signaling ready for use. She lifts her leg over the table onto the floor and watches as the robotic sutures flex giving it a human feel.

“This is the moment I`ve been waiting for ….

“my entire life…”

They finished each other`s sentence then looked at each other.

“What`s it like to die?” he asked her.

“There is no such thing as time. We`re all here for a reason”, she replied.

She walks toward him steadily with her mouth agape in awe with her arms held out toward him in case she fell.

“This is remarkable!”, she squealed as tears left her eyes in happiness.

“We fucking did it! Gael you can save lives now! “

“Ginger, you one would never believe me. They`d take you away from me and put your family in danger if they knew about you,” he said somberly.

“Sometimes we`re only to live what was meant for us. Then we must take everyday one at a time. Would you like to be free now?”, Gael asked her while looking away.

Ginger misses her family no doubt, but this could be an invention of a lifetime. She now has two minds and a new leg. Her DNA is crossed with his. The world isn`t prepared for something so drastic so he may be right. As she stares unto the sun outside, she thinks about that time she stood upon the ledge ready to end her life. Her being under after the coelacanth crossing made her see how much she wanted to live. The sun draped her body in light and blue crystals shined on her arms and her pelvic bones like tattoos. The new DNA prickled through her skin like new veins.

 

“I`m already free”, she replied.

 

 

 

 

#hydrocephalus · #literature · #published · #writing · Neuorscience · Wellness

“It Is a Halo, I Needed Stereotactic Brain Surgery”- Valentina Cardona

These stories keep getting interesting.

The photo above is taken by hydrocephalus survivor Valentina Cardona who is a Music Therapist. Her music is also a diary of how she copes with hydrocephalus.

Image may contain: Valentina Cardona C, on stage, screen and indoor

Photo credited to Valentina Cardona, 2018

We began to talk through that hydrocephalus group I told you about in my previous post. She has negative pressure hydrocephalus which caused her barometric pressure(severe head pressure headaches caused by the air ).

Me: 

Mine, I think is too high because when I sit upright I have head pressure
 
No I had an old shunt , my first shunt my whole life
We were talking about the programmable shunt that is available to hydrocephalus survivors now. I believe my shunt is the strata shunt and it is set to 0.5 now . In the begginging, mines was set to 1.0 which was overdraining my shunt to where if I sat upright, I would get the same braometric headaches and couldn`t function.
Cardona: Well, I have terrible memory and chronic headaches, but I live a normal life pretty much

you?
Me: I’m trying to get back to my normal life. I am in college for Psychology and usually work as an in home care nurse
What do you do?
Cardona: I study music in college  and it has been a long process because for all the surgeries I am behind sometimes

 
but I try my best. You are really cool hahaha
I am a musician too since I play piano so we bonded on that note. Today I saw this photo she posted on Facebook and couldn`t help but to ask what that thing is on her head and admiring of how strong she is!
Cardona: Thank you 🙂 It is a halo, I needed stereotactic brain surgery
Is like a radar. I had broken pieces of my shunt deep inside my brain and they needed to take them out
Me: OMG YOU ARE ONE STRONG WOMAN!
#hydrocephalus · #literature · #prose · #published · #writing · Beauty · confessional · Health · humanity · Love · mother · Neuorscience · self love · travel · tumblr · Uncategorized · Wellness

“I was born with hydrocephalus…I have completed olympic triathlons” – Simon Lannon

Again, I have had the pleasure of interviewing other hydrocephalus survivors such as Simon Lannon. An Englishman who is a successful businessman with a beautiful family. It`s always great to see a relishing story of someone else with hydrocephalus.

I know that many hydro-warriors suffer from depression because they feel like they are competing with life rather than living it to their full potential.

Sometimes , we have to work with what we were given and appreciate what we can do rather than steadily thinking about when our next brain surgery is or if the shunt is even working!

As I am still post-op from my brain surgery on April 3, 2018- I have been discovering how I think during recovery amidst discovering courageous individuals through the State of Texas Hydrocephalus Group on Facebook.

Lannon: 

I was born with hydrocephalus but not diagnosed until I was 3.

Now at the age of 39 I have had brain surgery 44 times, had 2 shunts fitted, a VP shunt which has now been changed to a VA programmable Shunt, had a sub tempal decompression, a chiari malformation procedure, multiple shunt revisions, multiple infections, peritinitis and live saving surgery many times!

I was not expected to do many things but my family, friends and neurosurgeon always gave me the support and encouragement I needed to keep battling and moving forward.

Today I am pleased to say I have acheived many things and continue to push myself on every level, every day!

I have completed olympic triathlons, ran a 120 mile extreme endurance run
in 6 days, qualified as an architect by profession but realised I am a true entreprenuer at heart.

And now have my own global e-commerce business in the financial sector, with exclusive rights to some of the most advanced algorithmic based trading technology in the world.

I tell you this because hydrocephalus has challenged and pushed me to my limits physically, mentally, and emotionally throughout my life!

I am slowly starting to see his vision through my struggles with hydrocephalus.

Lannon:  But every struggle has just made me dangerously stronger, ridiculously resilient and extremely more determined than anyone I know.

If you, your loved one or your child are struggling with hydrocephalus, then fight it or fight it with them with everything you have!

Unfortunately, I didn`t have my parents to raise me and help me through hydrocephalus but I have really good friends and a step family that encourages me everyday. Not to mention the two lumbar punctures (spinal taps) just to make sure fluid is protruding.

Lannon: Because if I can do all of this with what I have been through, so can you!!!

I`m thinking of you all, always 

P.s. picture is me with my beautiful wife Hannah and my baby boy Lucas.

#KeepFighting #HydroWarriors 😉” .

 

I only hope to be as amazing as you Simon!

#literature · #published · #writing · confessional · Health · humanity

“I had headaches growing up”- Cathy Keeling; a hydrocephalus survivor.

The other day I held another interview from a fellow hydrocephalus survivor named Cathy Keeling. 
Cathy: I had headaches growing up but it wasn’t until I was in my early 20s that a doctor did a spinal on me to relieve pressure and pain which they continued every 3 to 6 mos.till the last spinal didn’t close up I had a choice to either continue w spinals or to have a Medtronic vp shunt(ventricular peritoneal shunt)  put in which I decided shunt was best.
` I have never had it replaced but have had magnet dialed either up or down I also take pain medication  for headache pain my hospital here doesn’t have equip to help me with shunt and I can’t afford a trip to Portland 4 hours away and when interstate is shut down I wont be able to get to Portland ‘.
Me: ” Thanks for telling me your story. I am honored to share your shunt experience.
I have talked to many people that have hydrocephalus but lives far away from compatible health providers. It`s hard enough .to go through having to have health providers but its even more difficult to not have other health support. For many people with hydrocephalus, they only have a pediatric neurosurgeon for shunt spe.cialism. I have been blessed enough to find a regular neurosurgeon that would take my health case. I live in Houston Texas and my neurosurgeon is in Kingwood, Texas.
Cathy is married, retired, a proud grandma and lives in Eastern, Oregon.