Weigh Scale

Do you hear it?

Relief sounds like

a girl’s slip

a bird’s wing

your eye lashes fluttering

against your blushing cheek

Do you hear it?

Suffering sounds like

cloth pulled by stick across dirt floor

chalk pressed violent into board

fingers opening blouses raggedly

your chest bone protrudes

more than the year before

Do you hear it?

reminding themselves they can still fly

Only so much can be said of birds, or landscapes

yet grief? Grief is a world incapsulated in a tear

held to the sun and magnified, its kaleidoscope of color

without end

and while you may see me sitting at this table

with dried flowers catching wan Winter sun

my face a careful study of emotion beneath surface

I am actually at this very moment

lying on the unwashed floor

feeling cold tile invade my pores

just like the virus who crept into my stomach

changing everything like zealous house cleaner

see, on the floor I can curl up like I did as a child

pretend I am a dragon again, where ageing and its horrors

or just the spite of unbidden sickness

will not come for me, because I am no longer real.

The sun light will fade and with it, shadows come

reminders of our ephemerality

a dance with what is and what is no longer

the ghosts of my grandparents waltz beneath pear trees

their necks bent to dark skies, mouths slack with amusement

I thought then, nothing could disturb the fabric of the world

because youth told me so

and lies were easy to sew

delusion, such a merry friend

now it is not as easy and like them, my mask grows weary

often wishing to climb into bed and read

stories of others who have lived and died

sitting at tables, lying on floors, looking upward, open mouthed

finding ways to express the horror and brief respite

of coping with pain

I so admire those souls who laugh

though I suspect sometimes they simply do not think

of how things really sit

and that’s all right

because there’s no one way

of getting through this

the birds, maybe they know other means

perhaps that is why they migrate and it is has

less to do with warmth and more to do with

reminding themselves

they can still fly

(Expecting To Fly, by Buffalo Springfield, one of the best songs of the era https://www.youtube.com/watch?v=hzMl0-bhNcM&t=25s)

Submit your work to these two anthologies


BUT YOU DON’T LOOK SICK: THE REAL LIFE ADVENTURES OF FIBRO BITCHES, LUPUS WARRIORS, AND OTHER SUPER HEROES BATTLING INVISIBLE ILLNESS

AND

THROUGH THE LOOKING GLASS: REFLECTING ON MADNESS AND CHAOS WITHIN

Indie Blu(e) Publishing is thrilled to announce that we will be starting off 2021 with sister anthologies, But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Super Heroes Battling Invisible Illness AND Through The Looking Glass: Reflecting on Madness and Chaos Within.

The focus of But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Super Heroes Battling Invisible Illness will be on writing and art from those living with a chronic but invisible physical illness or disability, such as fibromyalgia, lupus, multiple sclerosis, cancer, digestive disorders, chronic fatigue syndrome, diabetes, migraine headache, dysautonomia, etc.

The focus of Through The Looking Glass: Reflecting on Madness and Chaos Within will be on writing and art from those who are living, or have struggled with, mental illness such as mood disorders, anxiety disorders, eating disorders, personality disorders, post-traumatic stress disorder, or psychotic Disorders.

Writers and artists are welcome to submit to either, or both, of these anthologies as applicable to your lived experience.

Given the high volume of submissions that we are expecting, we ask you to follow the submission guidelines as closely.  If you are submitting to both anthologies, please send your submission in two separate emails.  We will begin to review all submissions after January 1, 2021.

Please note that we are not able to offer monetary compensation or free print copies to contributors to these anthologies; however, all contributors will receive a PDF copy of the anthology they are published in. Indie Blu(e) Publishing has prioritized the accessibility of our titles and providing an outlet for artists and writers who might not otherwise get published over profits since we first launched in the fall of 2018.  Keeping 400 and 500 page anthologies affordable globally in a pandemic is challenging.


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But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Super Heroes Battling Invisible Illness

Anthology Submission Guidelines

SUBMISSIONS ACCEPTED: December 1, 2020 through December 31, 2020

SUBMIT TO: IndieBluSubmissions@gmail.com

SUBJECT LINE:  But You Don’t Look Sick Submission

SUBMISSION FORMATTING GUIDELINES 

  • The maximum number of pieces for submission per writer/artist is six (6).
  • Writing may include poetry, prose, short fiction, essay, and/or creative nonfiction
  • Individual pieces of writing should not exceed 1,000 words
  • Writing should be submitted as a single Word attachment to your submission email.  PDFs are the acceptable alternative if you do not have access to Word.  
    • Please use either 12 point Arial or Times Roman font with 1.15 line spacing.
    • Individual pieces of writing in your Word document should be titled, and separated by Page Breaks (not hard returns). A page break is achieved by using Control+Enter.
    • Special formatting is strongly discouraged.  Bold, italic, and multiple font sizes in a single piece are acceptable.
    • Please title all attachments starting with your first name,last name.  
  • The exception to this is if you design your submission as a ‘camera ready’ JPG or PNG image that we can import into our publication as we would a photo. In that case, you may use any formatting you wish, but the image must be crisp, 300 DPI, and able to be reproduced clearly in black and white. If in doubt, please contact us at IndieBluSubmissions@gmail.com before submitting.  Your ‘camera ready’ writing must be accompanied by the text in a Word (or PDF) version.
  • Artwork submitted for the Anthology must be crisp, 300 DPI, and able to be reproduced clearly in black and white
  • You will be notified if your work is accepted. Please do not consider non- acceptance as any diminishment of your experience, but as with any publishing venture, we must try to fit the individual pieces together into a strong whole.
  • All contributors to the anthology will receive a PDF copy of the finished book

BIOGRAPHY: All submissions must include a professional biography and cannot be adjusted once submitted. Bios should be 75 words or less long and may include your social media links.

You will be contacted directly through your email when your work is safely received for submission.  If your work is accepted for the anthology, you will receive an agreement letter that you need to complete fully, sign and return to us within 10 days. 

PREVIOUSLY PUBLISHED WORK We will accept previously published work but must have written permission by the previous publisher attached with your submission if they retain rights to your work.

If you own the copyright, your permission and the date and title of the previous publisher must be included at the bottom of your submission. 


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Through The Looking Glass: Reflecting on Madness and Chaos Within

Anthology Submission Guidelines

SUBMISSIONS ACCEPTED: December 15, 2020 through January 15, 2021

SUBMIT TO: IndieBluSubmissions@gmail.com

SUBJECT LINE:  Through The Looking Glass Submission

SUBMISSION FORMATTING GUIDELINES 

  • The maximum number of pieces for submission per writer/artist is four (4).
  • Writing may include poetry, prose, short fiction, essay, and/or creative nonfiction
  • Individual pieces of writing should not exceed 1,000 words
  • Writing should be submitted as a single Word attachment to your submission email.  PDFs are the acceptable alternative if you do not have access to Word.  
    • Please use either 12 point Arial or Times Roman font with 1.15 line spacing.
    • Individual pieces of writing in your Word document should be titled, and separated by Page Breaks (not hard returns). A page break is achieved by using Control+Enter.
    • Special formatting is strongly discouraged.  Bold, italic, and multiple font sizes in a single piece are acceptable.
    • Please title all attachments starting with your first name, last name.  
  • The exception to this is if you design your submission as a ‘camera ready’ JPG or PNG image that we can import into our publication as we would a photo. In that case, you may use any formatting you wish, but the image must be crisp, 300 DPI, and able to be reproduced clearly in black and white. If in doubt, please contact us at IndieBluSubmissions@gmail.com before submitting.  Your ‘camera ready’ writing must be accompanied by the text in a Word (or PDF) version.
  • Artwork submitted for the Anthology must be crisp, 300 DPI, and able to be reproduced clearly in black and white
  • You will be notified if your work is accepted. Please do not consider non- acceptance as any diminishment of your experience, but as with any publishing venture, we must try to fit the individual pieces together into a strong whole.
  • All contributors to the anthology will receive a PDF copy of the finished book

BIOGRAPHY: All submissions must include a professional biography and cannot be adjusted once submitted. Bios should be 75 words or less long and may include your social media links.

You will be contacted directly through your email when your work is safely received for submission.  If your work is accepted for the anthology, you will receive an agreement letter that you need to complete fully, sign and return to us within 10 days. 

PREVIOUSLY PUBLISHED WORK We will accept previously published work but must have written permission by the previous publisher attached with your submission if they retain rights to your work.

If you own the copyright, your permission and the date and title of the previous publisher must be included at the bottom of your submission. 

WHAT WE VALUE

Our society worships entirely the wrong animal, venerating them and reducing others to ash.

The news recently devoted a good portion of the sports coverage to how much money certain sports figures were going to be paid for kicking a ball across a field. And this in a time when our jobs are dissolving, our society is being wrecked, our economy may be irrecoverable and certain industries will cease to exist en mass. Put simply, there will not be jobs to come back to folks but apparently we still need to pay these guys billions for their service to humanity?

I cannot understand how ANY society and how any of us can tolerate/accept a sports figure being paid anywhere NEAR that sum for what they do when those who really do jobs worth paying, are dying in droves because they are not receiving enough personal protective gear to protect themselves.

When did we start paying someone to kick a ball millions and a nurse who saves our life, hundreds?

What’s wrong with us?

If I were an alien observing our planet, I would seriously wonder if we all were crazy in our assessment of VALUE. What we value. What we do not. If nothing else, Covid-19 has given us a chance to see this once and for all and try to do something about it.

We have marched for Black Lives Matter during this time because it was over-due and our raw emotions on the subject burst out of their polite shell and filled the streets with ire and a desire for equality but how many of us really want equality? Not all of us that is for sure, look around and you can see it in every facet of life, a desire to be above someone else somehow.

We still routinely under-react and permit by our inaction, serious hideous crimes like rape to go unpunished in this country and others.

It’s the year 2020 and we still think inequality for women is acceptable in some forms and fashion. Let us not forget what Maya Angelou said about wanting to vote for a white woman over a black man. She said – women were the original oppressed group, thus we should work backward until all oppressed parties are equal. I agree with her.

We still think hate crimes against Jews and telling Jews that Israel should not be their country is somehow acceptable, despite those Jews having descended from that country. Would we say the same to Black People about Africa. Of course not! So why do we say it to Israel? Because of the Palestine Question which Europe in particular has decided to side with, uncaring of the history of persecution toward Jews and their right to have some land of their own. Of course we shouldn’t persecute Palestinians either and of course, Israel has made mistakes but it’s now about what optics politicians choose and what side of the story is half-revealed via inaccurate news reporting. It’s essentially about which side looks right to support? Because Trump supports Israel, most left-wing supporters are against it. Yet it is not that simple and never should be. Lest we forget our history.

We still think homosexuality is unnatural and abhorant and that being queer isn’t natural. We don’t say it out loud because it’s not popular to say it, but we think it and we act it and gays know. They know.

We talk about slavery and how horrific it was, but half the time we just pay lip service to the deeper issues, because we don’t know our history so we don’t mention Native Americans and how they were exterminated en mass and continue to be disenfranchised. We’re so proud of ourselves for changing the Red Skins but we think that’s enough. Or how slavery has never really gone away, it’s just changed hands and outfits, but it’s still well and thriving in many forms.

So it’s never enough. Until everyone is equal and inequality and racism are a thing of the past. But will they ever be? With people who seem to thrive on discrimination and putting themselves ahead of others and putting others down? If people think wearing a mask is too much, is it any wonder they really don’t give a shit if you are sick or you are vulnerable? Don’t they just want you to die and bugger off?

Likewise with illness, with chronically sick people, it’s never enough to just have laws that allow them to not be discriminated against because discrimination comes in a myriad of differing forms. Subtle. Unreachable. Devastating. People of color have to put up with this EVERY SINGLE DAY as do women, as do gays, as do sick people. Just one roll of the eye says everything. Says; ‘we think you are pathetic‘ invalidates an entire moment.

Chronic illness is a little like amputation. Obviously anyone who has suffered an amputation will refute this and rightly so. But metaphorically it remains akin to the loss of a limb. You are left flailing, unsure of how to right yourself, and continue as once you were. A part of you is lost.

They talk of periods of adjustment. The stages of grieving: Anger for what you have lost. Shame imposed by a society who now judges you weak. Acceptance of a ‘new normal’ that includes intolerable things such as chronic pain etc. For many, those stages of grieving never really end, they cycle and you go through different dilutions depending upon how you progress.

But progress is perhaps not the right word. In our linear society where so much is expected. For someone to drop off and no longer thrive, in nature they would be left behind to perish. In our society they are carried along but reminded frequently, of their burden, of their ineptitude.

For many who suffer mental illness, physical illness, both, there is a lot of shame attached to their existing after this fact. Even as people do not come out and say it directly (and believe me, many do!) there is a thin veil that is easily penetrable. People know when they are treated differently, seen differently, worse, judged without jury.

Being ‘sick’ in any manifestation is seen as a ‘weakness’ by our society. This invariably goes back to the ‘dog-eat-dog’ notion of surviving. The weakest link perishes or is a burden to the whole. But these days, with our so-called faith and mercy in place, one might imagine a little more compassion? And if you did, you would be sorely disappointed.

Since getting sick in 2017 I have felt intermittently well enough to continue working and ‘accomplishing’. But as with any pendulum, when it swings deeply toward illness, I am right back at the horror point of when it all began, down on my knees, imploring the universe for healing. And for the most part I have done this alone, because as all those who have been sick for a time will attest, most people do not stay by your side. Even those you expect to.

You can’t plan any longer. A trip is a fear because what if you get sick? Then someone suggests; maybe it’s in your head, maybe you are making yourself sick? And no matter how many times you prove otherwise, they think maybe it’s a choice, just like being gay is a choice, right?

Wrong. You can’t rely upon yourself like you used to because you never know how it’s going to be, how you are going to be. And usually you could be relied upon 100 percent and now that’s gone and somehow you still have to plan a future, but how do you plan a future if you can’t rely upon yourself?

I try to take something from every experience I have, including negative ones. Without learning we don’t grow we just regurgitate and I would rather grow even if I’m throwing up and in pain as I do it. I have taken from this experience what is obvious, but I have also tried to take from others experiences, and have noticed disturbing patterns among those I know who have also been sick for a while or a very long while.

People leave.

People don’t care.

Poverty goes hand in hand with illness.

Anxiety and fear are natural outcomes for a plethora of reasons.

Loneliness can kill.

What I have come to see is this. Sick people are TRUE WARRIORS.

They fight the unimaginable that most of us never have to endure. They have to get pacemakers in their 40s, they have to struggle through taking 2 hours to get dressed and STILL MANAGE TO SHOW UP and this strength – this strength is what I have learned the most from my experiences and listening to others. Strength comes in many forms. We dismiss most of those forms but they are real.

I watch people who have seizures and brain tumors, fight and fight and fight and I realize, we’ve got it backwards. We should be applauding these people not marginalizing them. But we do everything backwards, because as a whole we are poisoned by false ideas of what is valuable and what is not. We toss aside those we deem un-valuable when they are perhaps some of the most valuable people in the world.

So if you are disabled in any way, be it in your head, or your body, remember that. You are some of the most valuable people in the world. Let nobody ever let you forget that. You are some of the most valuable people in the world.

This is written for my sister Angie. You inspire me every single day. You are that light in the dark that refuses to give up and because of you, I refuse to give up too.

The Right To Die

https://www.yahoo.com/news/column-californias-aid-dying-law-100053133.html

The Right To Die debate is one I have strong opinions on. Ever since Brittany Maynard decided to end her life to avoid inevitable agony and suffering and watching her discuss this in many interviews, I concluded that the Right To Die law should exist for everyone, everywhere.

There are pitfalls no doubt. I can imagine nightmare scenarios where people are ‘terminated’ by bored relatives who do not wish to take care of them. So obviously safe-guards must be paramount. That said, I am open to the RTD law be expanded to include dementia patients and those with serious Chronic Illness, including long-term-depression.

That’s murder! You may say. And part of the invariable slippery-slope! But I would disagree. Unless you have been the victim of Chronic Illness and/or long-term-incurable-depression you cannot speak for others who suffer each and every day.

A few years ago I killed a kitten who was suffering. It was in agony, unsavable and its liter mates had died in excruciating agony. It was a Sunday and no pet-store nearby was open to euthanize the kitten. To spare her suffering I put her to sleep myself. It was the hardest thing I have ever done, I didn’t actually think I had it in me (to take a life) being vegetarian among other things. But the compassion for her suffering over-took the fear of harm.

The harm was her suffering any longer and that is how I see RTD laws.

Obviously we have to put into place protections against this being misused. I recognize that many deeply devout folks believe God takes us when we are ready, but I have never subscribed to that. How is suffering in agony EVER God ordained? If a God exists I do NOT believe he/she chooses people to suffer in agony for years on end. Thus for me, that argument is moot.

Without the issue of ‘taking God’s job away’ we are left with the morality of RTD laws. If I see someone suffering as horrific as it is, to consider their dying at my or their own hands, I would want to help them not suffer. If that was their true wish.

In the case of dementia patients, if they sign a waiver now they can ask not to be force-fed and kept alive, but it still means those wishes can be ignored, effectively they can exist for years as a vegetable, and do nothing about avoiding that outcome. This isn’t a pragmatic thing. Obviously our society is going to be destroyed by dementia cases as more and more develop it, but irrespective, this isn’t about convenience of death, it’s about the mercy of death.

Few of us (I know some exceptions) would wish to shit on themselves, not be able to eat, remember, function etc, and lose all dignity and awareness. Most of us would prefer to die. Giving us a way to write this out and have a representative help us achieve this, seems to me, a mercy not a convenience.

The whole subject is heart-achiningly awful and we avoid talking about it for the most part. But we need to think of this. Just recently with Covid 19 ventilation, the question of dying and life has been very pertinent and young people who never wrote living-wills have been in limbo. It is never too early to consider these things because we really don’t know.

When I put my cat of 18 years to sleep it haunted me. Briefly I went back on my belief that RTD was the best choice because I thought; If I can’t handle the images and flashbacks of the catheter being put in my cats arm, and watching him being put to sleep, if I felt that was ‘wrong’ in some way, how could I handle it if it was my dad? Or someone I loved?

Truly I think I am nearly not strong enough to cope with that day. But despite that I would still do it. TO END THE SUFFERING. It would haunt me and yes it would feel worse to me than if they died naturally just as it would have been ‘easier’ if my cat had died naturally instead of being given drugs that killed him. Watching that was horrific and it did feel ‘unnatural’ because it was but sometimes it’s the only choice, and it’s the best choice and even if it leaves us feeling horrific, we should consider it.

I don’t regret putting my cat to sleep. But I regret that it had to happen and I still get flash-backs of the last moments. If I had to do that with a human-being I know it would be the hardest thing I ever had to do. But if I loved that human being and it was THEIR WISH I would hope I had the courage and love within me to do it or be part of it or at very least, support their wish.

Having had chronic illness I know we can be ‘not in our right minds’ and so the issue of ‘how sick is too sick?’ must be considered. Depressed people for example, may be able to be cured, so are they really the right candidates for euthanasia? I don’t know the answer, I only know that if someone I knew had suffered for 20 years and wanted to die, I would find it hard to deny them that mercy. If all else had failed.

This is not what we want to think about but right now, out there, are many people who are in this VERY situation right now and have no recourse to end their suffering. I believe safe laws CAN be made that protect against abuses and I believe at this juncture in our societies evolution we need to consider those things, not to keep our sick numbers in check, but to be merciful to suffering.

The courage of Brittany Maynard has stayed with me ever since I heard about her and followed her story. Some may say that is morbid. I say it is honest. I still think of her, she affected me deeply and opened up this debate. I hope others can get over their prejudices of what they believe others should do and give people a CHOICE. Just like my best friend who doesn’t believe she would have an abortion but believes others should have the right to choose if they want to have one. Such is this debate about an individuals right to choose their outcome. Who can honestly deny that in the face of suffering?

I often think if I live to be old, I will be alone and I fear that very much. I think if it were possible I would choose to end my life simply based on not having enough money to keep going or enough reason and family left to make it worthwhile. Is that wrong? Maybe. But one day that too may exist as an ‘option’ and a mercy, to help those who would otherwise resort to suicide which can often fail and leave awful aftermaths. This is a very sad subject but it’s one many of us will one day face one way or another. I don’t want to dwell on it, but equally, I don’t want to pretend it could never happen.

I think now more than ever, we have learned, anything can happen and we need to be prepared. Taking responsibility for our lives AND our deaths is a responsible decision, and helps those who may be left in our lives, follow our true wishes. I hope I never have to find out, but I believe we should all be prepared for both the best case scenario and the worst. Contrary to popular opinion, taking ones life is probably the hardest thing a person can do, not the easiest. But as this article above states, there are worst things than dying and I would say suffering in agony meets that criteria and forces us then, to consider this subject honestly and with compassion.

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I AM A TOTEM OF MY OWN BRANDING

pexels-photo-573298

I’ve been told I’m a chronic pain in the ass

after all, it’s easy to destroy a child in an adult’s body

with past-tense words

and now in the time I’m meant to be at my strongest

chronic has visited me and stayed a long while

on a good day I think; This will not be forever

but temporary has always been a long way off

the doctors love to tell us; It’s incurable, get used to

living like this, hostage to something unknown and strange

as if that’s a normal thing to do

but if enough of us live with chronic illness, it will become normal

and that is not a good thing.

Before this …

I took chances, because you think

I’m invulnerable, sometimes I can fly

health, you take for granted

though I truly convinced myself, I had checked the boxes

right weight, exercise, organic, vegetables, no pre-made meals

(well, this is what I told my doctor, sometimes a couch counts as exercise, right?)

if I ate a slice of pizza, it was a treat with friends

though I like root beer, I never drank it

maybe making up for cigarettes, smoked in my twenties

but I thought if I keep jogging, if I keep living healthily

I won’t be felled, because you ARE WHAT YOU EAT.

A few months before I got sick, I recall

feeling strong, climbing through snow drifts and laughing

boundless energy, working long hours, feeling intensely alive

people saying; you look so healthy, your skin is radiant!

Those are not things people say now, unless

I apply a lot of make-up, to camouflage my fraying edges

instead it is me, who declines invitations

I am sorry I cannot go with you to eat, even though eating out

is the number one leisure activity where I live

because my stomach is ruined and I cannot digest much

I live plain and simple (and boring), like a nun and I am numbed

to the pleasures of wine and sauces and garlic, spices and oils

not recognizing my bloated mid section in the mirror

from the girl who once was told

she had an hour-glass figure, with a wasp waist

could run for buses and catch them in three-inch heals.

I know everyone has their burden

but when you get sick and it doesn’t go away

life becomes a series of scolds and let downs

you find out who really loves you and who harbored an anger

used the opportunity of your downfall, to insert a knife

it is the cowards way of course, but freedom of sorts

for none of us need, that kind of negativity in our lives

there is a blessing in disguise, when you find your tribe

the people who care and know the real you

not wanting to tear you apart, because it’s easy to kick you when you’re down.

But blessings do not salvage, the hours you spend sickening

remembering how you were rarely felled in past years

strong of body, sound of mind, juicing and walking ten miles

everything is turned upside down, inside out when you find

a burnt fuse, at the end of your outstretched arm.

There is no cure, there is no future

when you live, in a jar for the jarring

for a long while, I blamed myself

maybe in part, because someone I trusted told me;

“It is your fault, you must have somehow caused it”

easy to throw stones, at glass houses

I was a glass house, with many windows

break one and I cannot repair it

the wind will come in and make of my space

chaos

the sun will come in and make of my peace

madness.

Those things that brought me joy, were gone

instead, the regiment of illness strode in and stood firm

you cannot feel passion, when you are sick

ageing in hours, rather than decades, trying to stay above water

it is hard to feel hope

you rely upon the kindness of others

which is hard to do, if you are not used to it

and when they lift you to the light, you promise

if I can recover, I will try ever so hard to never be ungrateful

but with every mercy, is a dark day in hell

those days take it all out of you, like a scourge

the sickening can age you, more than a nightmare

one minute you recognize yourself, the next you are unknown

vulnerability, of not being able to take care of yourself

the expense and fear

your world crumbling around you.

These are things you get used to and when you have fallen

to the bottom and can no longer get up

that is where the truth lies

that is where you can find

your true self and the end of fear.

They tried to tell you that you were insane

making it up, all in your head, something’s wrong with that

crazy lady who pounds her fluttering chest in vain

tries to catch the eyes of doctors, with beseeching side-glance

SEE ME! HEAL ME! SAVE ME! WHAT IS WRONG?

WHAT HAS HAPPENED TO ME? WHY DID I WAKE UP ONE DAY

SICK AND IT NEVER WENT AWAY?

And yes ! Something was wrong with me and still is

not my doing, not my causing, not my dreaming

despite you saying; You bothered us, when you called and were upset

no mercy, no mercy, no mercy, that is not love.

Helped me let go. Don’t hold on to negativity.

Oh doctor, get it outt!

and if you can’t, then give me the key, the saw, the pick

so I may survive myself and somehow continue on.

Am I to label myself chronically ill, or in recovery?

Surviving or dying or all of the above?

how do you define what doesn’t go and doesn’t kill?

Spending all your money on alternative treatments that

don’t even know what they pretend to cure

how do you describe one good day, followed by one in hell?

others won’t understand, because they are well

what I would give to return, to that safe water place

but even if I did, I would not be the same

you live years with a loaded gun to your head, everything changes.

I am not me anymore

I cannot see out of my left eye

I cannot lift heavy things, with my weak foreign arms

I can walk ten miles and not break a sweat despite this and be told

by friends and foes; OH YOU DON’T LOOK SICK

I am an apparent scar of contradictions and pain

I hurt every day, my stomach feels like

something is eating me from the inside out

it convulses and retorts and shouts

“you will never win, you will bathe in pain the rest of your life”

but I will still try

because I don’t know how to give in to enemies, I cannot see

and even as I cannot eat normal food

one day I am good, the next I am dying green

even as nausea, has become my constant companion

and bottles of pills and vitamins rattle in my pit

even as I fight to be gracious in the eye of the storm

and those I thought would stand by me, try to drown me instead

I know there is still a moment

I am well enough to remember who I am

never to find that peace of mind again

but maybe recover to another state of being.

I wake in the night covered in sweat and the disinterested doctor says

“get used to not sleeping, get used to all of this, it is what you must suffer and many others do”

as if it is normal to be like this, as if it is something we should not mention

I will never think it is normal to be hijacked!

I jog into the forest, because it reminds me I am still living, my feet still work

I fight with wilted hands, when they tell me there is no hope

that I should just consign my former glories to a picture album and put

my feet up for a fifty year occupation of sofas and couches and day time oblivion

because THE POWER OF ME can overcome the power of negativity and this I believe

as I see in the mirror a girl who doubts but stares back unblinking.

I have lost my will at times

I do not write as much,  I have less energy

the last time I had a romantic dinner was in a dream and I

sleep with a heating pad on my stomach every night instead of a lover

but I still pay my own way and my own bills

I have a pride in pushing back against status quo

DEFYING the prescription of HOPELESSNESS.

they tell me go on disability. Just give up

I am not going anywhere, but to the finish line

I learned

by losing everything and having nothing but

the sheer will and dim light of my existence

I can do this without those I thought I had in my corner

because I am stronger than I realized

and this grieves me, as well as reassures me

but I come from a long line of stoic, strong women

and it seems sicker than I am, that we should hate each other

because life, surely we have found out, is fragile

and love is all that makes sense

but even without love I will continue and not

let the flame go out.

Sometimes I ask myself why?

why not just give in? Take the knife, swallow the pill

to oblivion or some non-sign-posted destination

I don’t have children to protect

it would be easy to slip out of this world and its sword edge of pain

but somehow I feel I should protect myself

maybe because others did not

maybe because you defend yourself in the end

when everything else is fallen and you are still

somehow, standing.

I am weak and tired and prematurely aged into

a hunched over version of myself

hair greying with shock, skin is sloughing off and my

body is tied to the rhythm of a sickness that purges and gluts

I was told this kind of disorder was permanent

but nothing I have found, is ever guaranteed

so I have chosen to ignore this and believe

we can all fight and overcome

anything

even a death sentence

even betrayal

even silence

and when we know this

when we are strong for our weakness

realize our tears are just water and salt

burning the frustration of our visiting menace

then, we know nothing can hurt us, more than it already has

and we are free to dream

of a future without so much pain

where death stands to the side and lets us regain

some of our former dignity

for there is nothing dignified in sickness

and you don’t know me when you said I was glamorous

that is the last thing I am

I am beautiful for my courage

beautiful for my fear

beautiful for my survival

beautiful for my defeat

beautiful for my mercy of those who have no mercy for me.

And life is a wax and a wane

life is a torture and a friend

I am the totem of my own branding

I may live in a time where nobody else of my kith and kin remain

and once that would have filled me with pain

now I know you cannot rely upon

labels of safety

it is only by looking into the hearts of those

who stayed by your side when the storm hit

even if it is one, even if it is naught

you remain behind

the tempest cannot roar forever

eventually even agony ceases.

I wish now, to be everything you were not

to love others unconditionally

care for those who are in need

be the change I want to see

I want to find myself

at the end of all of this

I want to tell you, sickness

you do not win

you are just a miasma

I am a spirit with a soul

I will endure you

the me, of me, will remain

long after, to remember her worth.

Before this all began and through it, learned

only the fierce remain

only those willing to FEEL

and not those who run from feeling

with the ease of the damned.

The deepest cut

an-apple-rotten-on-the-inside

It doesn’t take much to knock a bruised fruit to the floor

watch it split apart like rotted glass, shards of damp skin in slow motion

try as I might, I AM that bruised fruit

try as I might, I cannot seem to recover myself back to where

once took for granted, the feeling of wellness

it doesn’t help when someone you loved abandons you

in the middle of your darkest hour

things like that aren’t supposed to happen

people who swear allegiance and loyalty aren’t meant to

be the ones leaving your side

such is the hour and fickle fan of illnesses devour

at least I know I’d never treat someone, that poorly

despite this and because of it, healing is slower

though I suspect anything less than fire would be

I didn’t know these things beforehand

the un-annointed do not possess future perspective

to see how illness strips your childish faith, cleaves you

bare and gasping

where family didn’t need to see me, even as I spent weeks in hospitals

it cut me to the quick, but it wasn’t the first or the last

maybe preparing the groundwork for your deepest cut

they say you get used to it in time

I never have

just as I never have truly understood the cruelty within some, who profess so hard to love

now, I am a changed person

I cannot make plans like I used to, thwarted by my body, haunted by ghosts

my illness is like a cobra, she stays quietly in the leaves

rearing up when I least expect or when I want most to escape

her possession of me, the way she knows how to tickle fear

with just enough venom until I am on my knees

I am sure some would say, this is therefore; psychosomatic

that it what they tell all women of hysterical turn

I saw in your eyes when I told the horror; your own disbelief

until doctors produced the proof, you still wondered

it became apparent to me, just like with sexual assault

being believed is paramount to recovery

alongside having faith in ourselves

I did not do a good job of the latter

finding myself more alone than when I started

and I thought I started pretty alone

I know I am a survivor and I was not destroyed

yet it feels like I was

when I look inside myself and find

so little left, a house without windows

it was only because of you, I kept trying

I told you that, I said, you were holding me up

when you let go

I fell to a place I did not know existed

I wanted to ask; Couldn’t you have just waited

long enough to see me through the worst?

but you wait for nothing except your own need

I had to find a way to stand even as everything crumbled around me

which is the biggest test I ever had and I failed it

I failed it again and again

walking through the lullaby of desiring to die for so many reasons

not least, the never-ending dance with sickness and pain

but somehow I did not die, I turned instead to stone

when people say I am strong now and ask; How did you get through it?

I don’t tell them; I am not through it

I still lurch and shake in the throes of unnamed demons and at night

I feel like an arythmic god has taken me and is spinning me

on high-speed like all my parts are made of jello

I want to ask that god; what is it you are trying to shake loose?

surely you know by now there is no more fruit left

not even the rotten kind

that fell and split and sunk into earth, a long, long time ago

it is only me remaining now; leafless, without sturdy branches

I cannot rely upon myself, I cannot rely upon promises

no longer a young, untouched tree with green shoots

I am damaged, broken and hobbled, by this specter and the unknown

as much as by those I knew and trusted

asking why to the imploring void; why are we stricken down?

to what do I owe my continuing? Even as it is, insubstantial

can they see in my eyes, when I pretend, I am trying not to gag?

my appetite spirited away by the scourge and never returned

I would die of hunger and not know it

were it not for some strange determination

I don’t know where that comes from

but as I stand, it must be a place within me

does not give up, as she did not, all those years ago when

the flames licked the top of my house and burned, everything I knew to cinder

I am not like the rest of the world; stronger for my poison

nor am I able to disguise my scars

if I were asked what recommended me; I could not answer

I would probably open my mouth and howl

because you can reinvent yourself, a million times it seems

I am just one incarnation, coming apart at badly mended edges

you, who are able to vault life in gentle sprint, must mock

I am after all, just a fallen fruit, lasting as long as she can

in imperfect, bruised skin

TLDR is bogus / we should read, we should care and take the time

TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.
Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?
Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.
I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.
It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.
I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.
My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.
I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.
I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.
I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.
Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.
The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.
During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.
If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.
I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.
If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.

Virus

This chronic virus grasped me by the throat

Not lover, not rapture, the thunder of hooves seeking sinner

A Gorgon, Kraken, Swamp Thing of the blood rose

I cried; Is this retaliation for not caring enough? I do! I do!

But those who don’t act, are only words and armchairs, the hypocrisy of ourselves, fattening in our prayers

Epstein Barr knew this well, it is after all, an insidious invader enjoying its art

What did I do to deserve you as my bedfellow? I asked one night

Can’t you just leave me be? Return to the days before you feverishly claimed me your supplicate?

Swimming in my blood, high levels of scarlet poison, whispering; I could give you fibromyalgia, MS, cancer, chronic fatigue

But I chose to cause you to sicken every day, your stomach, your achilees heal, my throne

And as you write, think on me, for I infect you all, only some are immune

You, you are weak and afraid, with your desire to be a writer, which you’ll never truly be

Wanna know why?

You don’t have the personality or the guts

You don’t have the PEP

Imagination and pretty words aren’t enough

You need a marketing machine, a robust ego, stainless steel skin, no demons in your head

I don’t have any demons, I lied

Tucking the beasts behind my eyes

I may not get feverish over publicity tours or spend eight hours online, learning how to be adored

Because I’m trying, despite you, to live fully, without so much noise

I want to sit on my stoop and observe the flight of birds through water

That’s how I eventually write or embroider my tongue with song

By being quiet and inhaling the vibration of life

Like our favorites who didn’t always write daily

Sometimes, there’s more in less

In our world it’s too much 24/7

The population bomb broadcasting its static purr

I am a bad self publicist, I don’t submit enough or live for attentions

I’d rather drive listening to a favorite song and tune into my imagination

You can use too many words

You can say too much

I’m not trendy enough, too pale, too short, too sleepy

Or is that you Epstein Barr?

Infecting my remaining motivation?

Obliterating the words before they are written?

That thin wristed girl, who balanced in high heels, dancing in the dark

Her head full of sound

If you came and found me now

Stroking the night clear of wreathed clouds

I’d be sleeping beneath the magnolia

Learning the runes of its roots