We cried a long time ago. We don’t cry anymore.

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A warbling, holding, green glass pain

Like joined hands make paper cut

Invisible like girl in crowd, falls

Deep as ink without light

Stinging with clamoring cymbal

Tears almost bare themselves as first night lovers, tremorous

Retreat beyond the naked streets

It is not brutal gnashing strength

But soft lipped resignation

And a little elipsing hope

For bare faced ceasement

Lain like prayers and rushes and thrown flowers wetting paving stones

No ceremony. Only, black cars devoid of dust

A trail without salt. They bent lower to seek. Not yet.

It’s hard to say it. The wind chokes words. Before.

We walk on. Omphalos in fatigued lament

Toward reprieve, illuminate in muted tempest.

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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.

The fear of others, becomes the dismissal

Long before now

there was a time I did not write

could not write, would not write

I danced, I moved, I climbed, I painted

with our heads together like arrows, friends and I

toy rabbits, ladybugs, a glow in the dark star

would entertain ourselves with crayons and pastels

plasticine and Lego, wooden blocks, old socks, foil and glue

I built fortresses in the woods near my grandmothers

house where she looked out occasionally, a glass in one hand

erected camps in trees fallen in the storms

or beneath protesting furniture that wasn’t meant to be moved

turning into a gypsy tent, bedding, blankets, string

anything the imagination could seize and shake out into magic

I did not write

even then I felt

words were just words

so glib and easy

words like; ‘have a good birthday’ from

people staying absent

words like; ‘you know I care’ from

people not caring

I couldn’t spell, so I didn’t reply

I didn’t enunciate, so I didn’t call them back

the phone would ring in the distance, mournfully

if it got too loud, I turned the music up

all this by the age of ten

I was free of words, they were not my language

a song and the movement it encouraged was

an elongation of expression and urges

and later, a dance club, even at 14, seemed safer

than three sheets of echoing, empty paper

rubbing shoulders with strangers who sought like me

to raise their arms through the strobe lights in search

of something missing

not seeking drugs or sex but the fury and beauty

of dancing away their sadness

I didn’t know it then

acting upon instinct

the instinct to run, when you cry

dance when you want to jump

push away those who clamor for attention

stop feeling the pain you do, every single day

whilst some of my friends who were depressed

listened to The Cure and other sorrowful LPs

I scorned anything sad and

stepped into the light of disco, rock, electronica

in time I found there were other things you could do

to turn off the hurt

and I did them ALL, every damn one

There is an honesty to admitting to yourself

I don’t know what’s been happening, but I’m in pain

everything I should rely upon has gone or never been

I am alone and I am scared, I haven’t yet grown up

nobody will help me so I have to help myself but

I don’t know how

I learned it felt good to lie in bed with someone

even if they were nothing more than warmth and key strokes

I learned it felt good to give rather than receive

because you protected those parts of you, rarely revealed or wanted

I learned drugs were not a menace but a street form

of antidepressant for kids who couldn’t tell their hurt

didn’t know where to begin or how to heal the

emptiness and anger growing in their bones

I learned if you are crushed badly enough, time and again

you grow a skin of fur and you become a feral creature

not human anymore

but living for the night, pulse of music playing

brief flicker of excitement, when you forget being yourself and all that comes with that

the disappointment, the heartache, the rejection

you’re just a shivering wretch, gaining admittance into forbidden light

you’re just a body that can move and shake and vibrate

beneath the waves as they engulf the roar and scream

every morning I swam 25 laps

every night I ran in heels for the bus

every stroke of midnight I transformed into anyone but myself

it felt good, it felt more real than trying to

inherit the mantle of despair and unwanted closing walls

I climbed out and didn’t go back

I never wrote down a word

not even when I received

another letter stating things that were never real

words were lies, words were lies

I’ve always been drawn to truth

Somewhere in those years, something changed

maybe you get lazy, maybe you forget your way

or the pain becomes something you think is who you are

or the hurt is a coat you wear without knowing you do

I stopped swimming in the mornings

I quit dancing in the evenings

in my blood lay a virus of dormancy and despair

it grew and grew like a wild flower teasing out of concrete

until I’d forgotten my way through the elaborate maze

I was just another lab rat, waiting to live their life, turn to ash and regret

Now the irony is, I’m writing all the time

I write how I feel, I write how you feel, I write out

the hollow cries kicking from inside out

but words are fickle, they are not your friend

words convey what you mean, and equally they contradict

words don’t get things done

words are on pages, often unread

If it would work I’d burn my thoughts

watch them light up the night on the 5th of November

put on my running shoes

go to you

take you by the shoulders and shake

all my words out of your head

run with you down the highway

find the place we can be in my mind

get on the dance floor, pull you with me

try another communication

another way of getting through

anything but the languages that leave us empty

mistrustful, doubtful, not waiting for more

we’ve both been there before

at the end of a letter

shaking our heads

for all that was done, versus said

is often quite the opposite

you tell me, if I knew you, I would not like

the person I came to know

but you are wrong, so very wrong

it is in the imperfect there is wonder

I’m used to people backing off, going cold, erecting walls

it’s what I experienced every day

the fear of others, becomes the dismissal

there is another way

let me show you

but not like this

let me show you

in between words

with every gesture of my soul

give me this

Compulsion

I just watched the amazing film Bohemian Rhapsody. Let me ask you something … if I begin this post with; “And I wanted to talk about being gay” How many of you would stop reading? Ask yourselves, what does that really say about you?

I want to talk about being gay. Watching the story of Freddie Mercury it struck me (again) how the tiny minority of people who are gay (not bisexual) still struggle. You may ask why or point to more worthy causes to talk about …

Imagine being 1/2 percent of the population. Maybe you already are. That’s how many women are lesbians and men are roughly 2/3 percent. Bisexuality is far more prevalent, however 85% of women who are bisexual end up married to man, which begs the question, is there such as thing as ‘true’ bisexuality’ or is there just a desire to play both sides until you settle down, invariably with someone of the same gender?

Either way, ‘true’ queer women are rare. For men, those who are bisexual tend to end up being with men. It begs the question – do these stats indicate being a lesbian is not a life style many people choose or want to adopt? Or simply, that most women have a tendency toward heterosexuality as their preference?

My unscientific viewpoint for what it’s worth is; Men who have sex with men tend to be with men maybe because to ‘go there’ is almost indelible? Whereas sexuality for women is more fluid, and whilst they may like having sex with another woman and find her attractive, it’s not enough of a hook. Is sexuality and gayness a preference? I don’t think so, which means the ‘true’ number of gays is smaller than we even credit.

I personally don’t understand why more men are gay than women, as I am biased and see a lot more to be attracted to in a woman than a man (although they are harder to go out with because they are more demanding and selfish and less romantic). Irrespective, a man who is attracted to men, doesn’t go back and forth as much, a woman who is attracted to women may well end up with a man as other considerations come into play. To me, this isn’t being gay – it’s just having fun. Maybe I’m saying being gay is massively different to being bisexual.

I would imagine the negatives about bisexuality are; judgment from both sides, and that’s about it. If you are totally gay then the negatives include persecution, ostracizing, not fitting in, having no role models, no representation and most of all – feeling weird because 99/98 percent of the world doesn’t ‘get’ you and where you are coming from.

How many times have I been told by a woman that they find other women attractive but they can’t really understand wanting to be with a woman for any length of time – interestingly not because of sex, most women like oral sex, but because of the high maintenance being with a woman entails and how nice it is when a man romances you. It is true, it’s rarer and finding it with a woman, well you often end up having to do all the work and while men are good at that, women aren’t as much.

Hence why of those relationships that last, the classical butch/femme roles tend to work out best because the lesbians who are butch want to imitate a man and romance the woman and the femme is happy. I realize that’s a negative stereotyping of female-female relationships but there is also some truth.

Thinking about the AIDS era (which has never entirely left us and now that there are new drugs that people can take to reduce their likelihood of HIV exposure, where’s the incentive to continue to practice safe sex?) and how many gay men (and others) died and the terrible things that were said about them and how generations exist now that know nothing of this and how it will be forgotten …

I remember I was very young but I heard people say things like; “AIDS is killing the queers its divine justice” That told me early on that gay people were not equal and would never be treated equally behind closed doors. At one point in my life I was in the closet because it was easier and unlike a person of color, a gay person can often be in the closet to avoid prejudice. I’d not been in the closet before and suddenly I was privy to the things straight people said about gays when they didn’t think one of them was listening. I realized that this had all been said of me when I wasn’t in the closet but behind my back.

Then the other aspect to consider is the gay community and how judging and excluding it can be and how for many queers, fitting in with their own gay ‘family’ doesn’t always come easy or at all. I personally tend not to get on with gays, I have found them to often possess the worst traits of heterosexuals which deeply disappoints me. Lesbians judge you for not being queer enough, or act like swaggering men. Gay men can be such divas that they own the sarcasm and bitchiness in the room.

Does it mean you’re a ‘bad’ queer if you don’t feel in with ‘your people’? And yet … why assume just because you share one thing in common, you’ll get along? I’m sure I share something in common with Trump as well … point made.

The female gay world is divided into sections, either you’re a successful, educated career person in which case you go to exclusive things and judge those who are not on your level. You only date those who are like you, and you have high expectations as well as demanding those women you date are athletic, social and above all, status and financially successful.

The other group are the more neighborhood based gays, and the clubs teem with liars, frauds and fakes alongside players, druggies and alcoholics. If you imagine being heterosexual and reducing the number of options you have from roughly 48% to 1/2% you probably wouldn’t find someone you liked either. And let’s for not forget, if you’re straight and you see someone in the street or anywhere, you can essentially flirt with them without fear. But how can you tell when someone may be gay? Contrary to popular opinion, the gay-dar doesn’t work THAT well. So you are further restricted to mind-reading, falling in love with heterosexuals or going to gay clubs where the worst reside.

Boo Hoo right? A hard life. But not nearly as hard as many others. Combine that with a co-morbidity of higher rates of depression/anxiety (no wonder) and all the accompanying aspects that may accompany homosexuality and a life time of being shamed, ridiculed, the odd one out, and it’s not simply one issue, it’s everything.

There have been times I wished fervently not to be gay. I got fed-up of having a crush on my straight friend who wouldn’t like me if I were the last person standing, I saw how well men can treat women, I envied the heterosexual world. That’s why being gay is no choice, as most who had one, wouldn’t choose it.

That said it’s not all negative. Some of the best parts of my life have been as a result of being gay. Watching the film on Freddie Mercury really affected me profoundly because it reminded me that only a few years ago in my city there were stickers condemning gays having the right to marry, that my own life has been severely disrupted/destroyed for several reasons related to being gay, and how many gays have suffered over the years.

I may not be a huge fan of this modern world – 2018 onward – and I may hark beck to ‘better’ eras as I perceive them, BUT I know things are improving for gays and I hope one day, being gay is not something that will pull you down and give you pain. It will be what it is meant to be, a natural minority who see things differently but are in every other way part of us all.

Spare a thought for gays even as you think they have all their rights now and should stop complaining. It is not as simple as possessing rights. Gays are still more likely to commit suicide, have addictions, mental illness, be ostracized from family and be beaten up and murdered. Gays can often be very isolated, their pain not taken seriously, and feel alone even among ‘their kind’ and it really does make a difference to us when someone, irrespective of gender, befriends us and likes us for who we are, without being uncomfortable around us.

A friend for a gay person has twice the value because we never take it for granted and we always feel so lucky. After all, most of us living, remember a time when admitting you were gay would guarantee nobody would be your friend. Therefore, thank you for all who show kindness to us, and remember, compassion is the only thing that compensates for the erstwhile damage human beings have historically wrought, both on minorities of all kinds and our planet.

I dream of a world where it will be okay to walk down the street and not worry about holding hands with the person you love, when it will be comfortable to kiss someone you’re with, in public, without fearing being beaten up. Just as women worldwide, dream of walking down a street without being raped. I believe this day can come, if all of us have the patience to see the value of talking about this and not saying ‘I’m so fed up with the gay agenda or the feminist agenda’ and switching off. Until we have true equality, the only thing we can do is bring awareness and hope in turn, it produces change.

Oh, and to those bisexuals? Yeah. Sorry. But on the other hand, I’ve got a point. Can’t you sometimes choose the girl? 😉

Go see Bohemian Rhapsody. It’s incredible.

Wisteria

fb3902489d3e4867927e2e3a9fa2e998Older people used to tell me how time goes faster for every year

I think it is more that we let time go on, doing nothing to change our course

where before we would have done more to reach the point, we were seeking

what causes this I don’t know, maybe youth is intense, more packed into a year

maybe we stop believing we can change, or get lazy, or preoccupied or led by fear

I wasn’t very old when I learned fear can stop the neediest heart and leave her all alone

staring at walls in a black dress

eventually a day comes we see we have spent a long time watching for ships

as years passed by and we got into a rut of our own invention

it stuns me we can stay still for so long, neglecting our wants, our needs

as if they do not exist, pushing them down, hiding their force

just as we deny their existence, they surface and it’s like no time has passed

we are the same passionate creature we were before we forgot how

only older without much wisdom, just the feeling we didn’t do enough

for some of that may be vanity, our finite lives, the idea of a beginning and end

some of it may be true, who we thought we would be, or never considered

I envy those people who set a straight arrow and shoot and never seem to miss

not all of us are that precise or insightful or calculated

I drifted, partly because of distractions, partly out of inertia or sadness or a feeling of loss before I gained

acting like I had all the time in the world, that things would come still come my way

when everyone knows as you get older it gets harder

to generate that spark, that kindling, that damn irresistible flame

I’m also guilty of trying to assuage fear and you cannot live for such things

you must be bold or if not, pretend you are, for nothing, nothing was ever found by a coward

I have been afraid a long time, I have not trusted myself or my ability to survive without safety nets and hesitation

there was this picture in my mind of me

old and alone in poverty and I ran from that as if it were the cross

so much so I didn’t consider if my choices were really mine

or I was just responding to anxiety about something that may never come to pass

and you

the attention I gave you

all these years

were not spent wisely

for when it ended, I got nothing in return

nothing at all to show

it was in that way, a real error on my part

nobody likes to pour themselves inside out for someone

only to find it all goes up in smoke

I can’t say you were my undoing because

we have choices, but I definitely wasted myself on you

who could cut me out of your world like I was a paper doll

all the emotion I had, that was wasted too

there is nothing worse than feeling you gave everything and still it wasn’t enough

so forgive me if I feel bitter about that.

When we stand still, we calcify but don’t always turn hard

I still remember the feeling of dancing and wanting and longing

I remember thinking maybe life doesn’t have to be so beige

and un-passionate, that it can be wisteria

maybe life can be the way I feel now at this exact moment

imagining what it would feel like kissing you until our lips grew sore

despite so many people in this world it is not easy

to stare across a room and find

your familiar, the one who moves your blood

but I thought I found it in you, from the very first

Probably I was mistaken, it seems like risks are only suited to certain players

but tell me, if I was wrong, then why do I hold such indelible feelings?

why do I not walk away when it seems, the logical thing to do

when I close my eyes I see your face

I long to hold your hand and feel the light pulse in your small wrist

except if things were meant to be

they’d fit and you’d feel the same way, not be unmoved by chemistry

perhaps it is the story of my life

to find it so hard to fall and when I do, land on my face

perhaps I am not meant to be in someone’s arms

held, worshiped and adored, as you once said

was that a brush-off or just the truth?

who knows anymore it almost doesn’t matter

because I have tasted disregard many times in my life

to the point of knowing all the flavors it comes in

and if you don’t share my feelings

if I don’t make you want to jump up and run to me

if you don’t stay awake at night, your heart thundering

then I am not going to try to woo you

and I don’t want to be the girl, who has to try twice as hard

not when it comes to emotions, they either exist or they don’t

it just seems an irony, I pluck up courage and make a fool of myself

I was once told I should go find someone who’d be crazy about me

if that were possible maybe I would

but you’d be surprised what exists

and what does not

in this funny world of

lonely hearts

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.

Safe ascent

q64w643

This unspoiled place

holds a silence and a sound both

in the careen of wild bird, dove-tailing against light

swish tailed-fox, caught in glimpsing treeline, scar of russet

your wool pulled and caught like thoughts on wire

I felt you inside, like mercury, descending to places I’d locked

tight against battering fists and claim

how did you learn the maze and possess

parts of me I had yet to give permission?

though all of us are like the wool, caught and fluttering

against a world of happen-chance and calamity

it is only perhaps, in those untethered moments

love, unexplained by all things

captures in unguarded step

drowning tightly held belief

we are our own master

and in this yield

in your arms and the void calling overhead

a vast sky holds swell of rain

just long enough

for our safe ascent