I AM A TOTEM OF MY OWN BRANDING

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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.

Absolution

tumblr_n7uflxumP11qanheao1_1280I don’t know if there’s hope

When friend turns foe

I don’t know

Where in separation

Yoke and embryo

Glistening placenta gouache

The painter may

Render this potential life

Legacy of strife

In verdant whisker

I could have been born

Elsewhere

Or not

Chemistry

Cellular change

Alchemists with tears as

Coat of arms

We consume tangerines

The smell of orange rind

And cloves

Seasonal with moth holes

Moses climbs from his wicker man

Escaping the fire

And disbelieved share

Their bronze debacle

Lend me the mahogany deep of your voice

Bringing me back

From kimono exile

Remember

I have no power

But the truth

Of nude vanquish

Attributed to

Low lamps, proffered incense

Summoning believers

In thin macintosh bones

We are rubric

To gardens

In the rain

Bird baths for those

Needful of absolution

I wish I had never existed

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.

The outsider

38638686_1843766582406138_8072796370370560000_nshe wasn’t like them, so they didn’t like her

to her face they smiled and said ‘nice things’

which she knew were lies

behind her back they laughed

and made dirty-lezzie jokes

because it made them uncomfortable

to think about what they thought she did

it made them feel a bit disgusted

like when you stand too close

she looked like them in superficial ways

wore at times, nicer dresses and had longer hair

the fact that she liked girls wasn’t in their

comfort zone

when it was summer time they had

BBQ’s and invited all the neighborhood kids

wondering if she would be safe around minors or

would do something inappropriate

when they started a mommy running club

she wasn’t invited because she was neither

a mommy or someone they wanted to

bare their secrets with

what would she understand of husbands?

maybe their husbands liked her

because she was unavailable

when it was Halloween they made candy and

knocked on all the doors but hers

because the other mothers said best to avoid

what they did not care to know

that’s why she lived a harder life than she had to

for there is almost nothing worse than pretend friendliness

leaving you more alone than if they said what they thought

and spat in your face

if you think that’s an exaggeration or she feels

sorry for herself

think on the tiny percent of the world

where being gay is safe or legal

and the huge part of the world where it is forbidden or punished

think on how many lament at

the shift in culture toward acceptance

calling it a ruination of our society with all

those damn fags

compare it to those who truly feel inclusive

how every day isn’t the same

when you have to contend with not fitting in

making everyone else feel uncomfortable

just by existing

nor can you talk about what matters to you

just in-case visual images abound and people

begin to change the subject

if it were a choice … a lifestyle … few would make it

yet she exists

wishing sometimes the phone would ring

another girl like her would say

I know how you feel

would you like to go for a walk?

she is a gay princess in a tower

and her princess

is somewhere in the world perhaps

thinking the same thoughts

two outsiders

unable to find each other

For all

Before, it would vex me when my nose ran and I didn’t have a tissue

when the tap dripped and no matter how I jiggled it, the drip drip drip would perpetuate, leaving a little rust stain, impossible to clean

when the cat would kick his litter out and eating fast, his food would spill, over the side, as he bent to consume just to again use and befowl

his cycle of eat/pee/poo seemed deliberately artful as if should he speak he’d say; that’s what I think of you

I would be annoyed at myself, when I forgot to latch the garden gate after mowing

and at night hear the sound of things moving, wondering at the fragility of life, should something creep up and strike

how easy to be hit by speeding car or thunder bolt, I spent far too long worrying the clouds of their impending storm

before, I would stand in front of tiny mirror, angled at my waist-line muttering things, without knowing how shallow I’d become

the baubles and the bells and whistles, trappings of someone as yet to acknowledge herself

just the illusion, the dress, the costume

I built castles and didn’t consider the ground

I forgot the child’s dear wish to fly and thought only of earthly options

my head was packed with good sense and no dreams

it mattered more that I possessed signs and wonders than to be real

in time as our tinsel fades and the corners of our smile grow brittle

when challenges mount formerly wrinkle free forehead

we stand so far from truth we could not hear if it shouted

come back from the festival, where drunk on yourself you see

only reflections of you in the carnival mirror of the sea

spend time stripped of your attachments and awards

they serve no purpose when they matter not at all

stand a while with nothing, sense the pleasure of a day

born only once

the joy of survival

a moment without pain

where like children we find wonder

In those days of simplicity beneath the sun

before we learned to live so thin, nutrition coming from emptiness

before it would vex me that the bulb needed replacing, garbage taken out, the dried remainder of eggs did not come off breakfast plate

and now

I smile when for a moment I am peaceful and the lap of night winks closed for another day to unfold, the first strain of pink ushering dawn

and hope

for it takes only one change, for all.