Six Months

Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.

I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.

I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.

You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.

If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.

I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?

It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.

That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.

You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.

Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.

What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.

The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.

I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.

I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.

Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.

It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.

If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.

First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.

I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.

Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.

I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.

Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.

So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.

Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.

I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.

That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.

My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.

If you’re reading this and you feel hopeless, know that you are not alone and there is hope.

Advertisements

The way

Yes
You can take away my last wrapping

That I am lain unclothed, on that unwilling baptism

Behoven to the whim of mankind’s mercy

Or 

Whether chance shall triumph 

Playing her arched long game in red taffeta

Or

The turn of weather vein encompassed betwixt fate

For surely

It rains where rain is least required

As once verdant lands, feathery and skeletal in need 

Their leathered thirst a distant drum beat

We may rend our chests in trying to reconcile

What seems without mercy

As the seeds dry before they reach

Nourishment

As the sun turns away from its hungered crop

As a girl is dragged off, just for showing the ragged hem of her ankle

We who comprise of water and salt

Sweeten nothing if spent in pursuit of filched agrandisement

Forgetful of those who once were brothers, sisters

Pausing toil to climb the jagged mountain

Sharing water beneath wide branched tree

Who has seen the come and go of little things like ourselves

Heard the speeches and secret vanities whispered into night air on polinated breath

Whose roots alone dwarf our fidgety pretention

All at once magnifying

The worth of an honest man, a kind neighbor

The brilliance of a blue throated starling

As language most timeless can be found in the grateful eyes of a stranger

Taking the long road together, as water shall run

Again in dry river beds

And show us our rightful way

In sight of land

IMG_0923.JPGMercy is an unexpected hand, steadying

Mercy feels like rain

Mercy hurts as laughter will, the first time you smile again

Mercy is a series of white flowers, forging out of bleached, dry grass

Mercy is a silver arrow, piercing resistance

Mercy is the face you need to claim, before all air is lost

Mercy is the final flood, a lost song, a forgotten book, page 456, line 34

Mercy is your imperfectly knit blanket over my shoulders, smelling of bonfire wood, shivering against wolf pelt, in necklace of thorns

We pull and we pull

Our teeth, our reach, our ankles

Until dearticulated and reborn, pass on our baton of water

Mercy is a legacy

A line in land, seen from air

The silken scar, cut across suntanned throat

Mercy is hearing them again, whether a moment or year since, beholding under solvent skies

The memory of love, held too tight, between clenched fingers

Mercy is the separation between, what we let go and what we keep afloat

When darkness dissolves resolve

Mercy lends hope

Inherit their voice

2012610_1809dSat facing away from the sun

an old man wipes years from his eyes

drawn over with cataract like milky bath water

he strains to see the outline of motion

 

where are all the old men? He thinks

once so barrel chested and neatly trimmed

with mustaches and shiny hair like Cover Girl teens

where are all the eighties queers who painted beaches

with tight abs and tiny shorts in tropical shades?

 

now half empty, the beach longs for color

only rotund women with bristly chins

unkempt hair chopped without thought

some with children or children’s children

placing sensible shades and thick UV factor 50

on slow-moving parts of themselves

 

in previous years you could

reach out and paint a rainbow

in their courage of being twenty

though lesbians and gay men do not

always a palate make

such contrasts in their expression

these women without restraint

mopping the brows of dying beautiful boys

unwilling nurses drawn to duty

by suffering ignored

 

some judged, as is human’s wont

even those judged themselves

learning in pious pews the curses afflicted upon

the sinner

their ingrained prejudices wondered;

Why so many striken did not stop frequenting steam rooms

smelling of bleach and pleasure and illness

looking for strangers with no way to tell

if death stood beside them?

 

perhaps; time old division of the sexes

rather than, one bad, one good

men will find a hole, stick it in without regard

this is not a homosexual thing but

the nature of a penis

gay men acted upon that unrestrained impulse

all men share, save those who learn greater depth

than the hand, the orifice, the gag reflex

then disease clasped them in a death grip

chewing away at fragile worn tendencies

soon no beautiful boys remained

hot in steam rooms to blink their doe eyes

fringed with fear

 

some divisions are economic

lesbians with babies, lesbians without brawn

unable to act upon their natural instinct

remained married, starched at home, dying in place

whilst young men, fed on corn and barley, took good

California jobs and soon the boom grew teats

 

educated baby dykes today do not know loss of freedom

or the true price of salt

they can rack up bed notches in reckless abandon

imitation not always the greatest flattery

but back then …

all so new and unsanctioned

people didn’t have road maps or internet

to gauge behavior by

and in the dirty rim of a third glass of whiskey

courage and terror would sometimes blind

best intention

 

girls today repeat the worst inventions

of boys without purpose

those early days of the movement

can a life be a movement?

they died weekly and by the hour

in shabby rooms without succor or sense

strangled by disease, shamed by the ‘told you so’s’

just coming out

only to climb into a coffin and be carried

jeers and spit and hate to their graves

where few wept, for they too shared death

mottled with kaposi’s sarcoma

some haters slinging mud shouted;

you depraved souls! You reap what you sow!

is this the word of Mohamed & Jesus?

or cruelty with nothing more than hate to grow?

 

now gays think they are safe

over the hump, socially acceptable

on TV, in your face, sitting next to you, earning more

painting their rooms mauve, their wallets thick

HIV can be lived past, no more automatic death sentence

adoption is legal, and marriage, a thriving business

do they even remember how many fell?

before they could inherit this tenuous hour?

 

the old man was one of fifty

the last survivor of his generation

depleted by silent war

struck down by AIDS and her harpies

over time even medication failing hope

or bodies, tired from their walk

collapsing on scalding streets without

the kindness of stranger

 

the old man, he cannot say to today’s youth

this is how it was, learn from the past

because they do not care, it is their time now

and if they knew it would not matter

only the hour of their immediacy

compelling them forward to their own history

one day past them and in reverse

they may share his loneliness then

too late

 

the old man

who used to be a beautiful boy

with golden skin and hazel eyes

a thick swath of black hair hanging like a wave

he looks at his gnarled hands and sagging arms

with their scars and their ragged hurt

and he wants to be as loud as the young

and shout out;

 

where have they gone?

the beautiful boys of my time?

why must I outlive them all and see in my decline

the loss of their right, to be recalled!

for whom among us, shall pick up the mantle

and say their names, once we are all

beneath earth?

an entire generation cut down

and smoothed over like asphalt

 

do we ever think of that?

in our perpetual urge to be present, in the moment?

those who have gone before

stand now like ghosts around him

an entire era

strangled before they ever could

inherit their voice

 

(This is my contribution to Pride Month. I want to remember those who are not here with us, because they died when they could have lived, if they had not been forgotten and repulsed. During and afterward, Africa was equally rejected, neglected, ignored, and millions died. Worldwide HIV/AIDS is still a death-sentence, make no mistake. Those with power decide who lives and dies, whose life has worth, whose does not, decisions are not made out of mercy they are made coldly with calculation and lack of compassion. All the rest is froth on a daydream. Our memories are sometimes the only thing keeping us from repeating history). #neverforget

 

Stillborn

thFrom Germany to Australia your parents fled

the brush of taint

your mother a beauty

your father with only enough room in his heart

for singular devotion

when she died, cut down by trolley car in front of you

aged six, catching the splatter of her broken skull

he took you into his bed to make up for her absence

you grew wan on divulgence of sin

til neighbors found out and your doors were broken

three men in uniform standing around the bed

get out they said

the smear of their inferred condemnation thick in your ears

like river mud swallowing you up among grubs and slugs

who blames a child for her abuse?

those who know nothing of truth, shining their finery with glass

you walked the line all the way to a foster home with metal teeth

thrown out at 17 for falling in love and shaming their Baptist ideals

as you and he prepared to marry he rode his bike in the night to pick up

his mother’s narrow ring

skidding on freak ice on the way back his head caved in like an exploding star

you stood at the altar alone waiting

impatient clock showing

he will not attend

afterward with nothing, there was no reason to stay

someone said like they do before you pass 20

let’s go to India

so you packed up your emptiness, put your leather sandals on

high in the Himalayas you caught the fever and nuns with tight wrapped mouths

whirled with lines and decay

nursed you as you slipped in and out of consciousness

liquid and sorrow pouring from you in bucket loads

a miracle! they announced when clawed your way back

what did you have to live for? being the whispered irony

and there, in the desolation of knowing nothing you walked

kept on walking until your feet blistered and your soul took flight

in the low hanging mangrove trees

where at night the shadows looked like an epiphany and you decided

I will return to my native land, the one of my ancestors

you wrote a distant aunt, she replied; come to the black forest we have

mud that will cleanse you of your sorrow and broad-shouldered men

Germany with its fairy tale castles and starched people rolling their own

you clambered over your wreckage, beginning again as only the young can

a flutist falling in love with your dark eyes and shiny thick Germanic hair

a marriage led to loneliness, he toured, you waited, touching his absence

with lightest fingertip

until it seemed being without him, would fill you more than staying put

traveling to Greece alone, you burned and burned and burned

turning yourself into oak

a waiter slept in your bed and kept you cool

against the battering murmur of sea tapping at french windows

life grew inside of you

when you took your first real job in London’s garish metropolis

heaving with anticipation and empty suitcases of hope

your daughter gave you the first peace you ever knew

a perfect child with a little mouth and large eyes

your Greek baby she lay in the curve of your hips smiling

and you breathed, deeply, and slow

like a long traveled bird finds purchase and easement

on empty shore

she, with her little tiny fingers and little feet

died of crib death just as

a match can be blown out never to

be re-lit

feeling like she hadn’t existed and she couldn’t be gone

here was your second decade of sorrow

etched between your fine eyes and deep clavicle

WHY? was not a word you used

absent of all

living only because your chest deemed it necessary to rise and fall

in time to your still-born ache framed

in reluctant silver requiring continual polish

you wanted to hurl yourself out of existence

yet you flourished as if life had said

we have taken and now we nourish

you grew successful, wealthy, every night you tucked yourself up

alone in a singletons bed

until the smell of the sea on the shores of Australia called you

it’s been eighteen years and it’s time

to come home

passing over Sydney Opera House you saw

the curve of sky and water meet

something within you released

he seemed to be waiting in the first corner you turned

as if always there, just ready to reveal

his promise to stay

with time they say pain subsides

which you know isn’t quite true

though love can keep together broken halves

by its stubborn hold on people who

would otherwise fracture and become

light on water skimming surface

it was not fair,  it was not right

now you are back in your homeland where

you began and will draw to a close

I hope

with the knowledge that even lives

built on pyres can hold

depths we release like night birds

flying unseen

overhead

Joanna

56akpbgJoanna

I never knew your last name

Benjamin wanted you more

than he ever wanted me

for your madeline face and framing water fall

of black hair

Joanna

as thin as if you only ate thought

your knees could not hold together you

came apart like a dearticulate doll

everyone felt so sorry for your ragged sorrow

though no one knew why

looking perpetually like you would cry

a Picasso blue girl of faraway gaze

Joanna

if I had not envied you the heart of a boy

who had bewitched my own, or felt your ability

to balance upside down on monkey bars

making you superior in the rules of horse chestnuts and marbles

I may have seen the threadbare grief in your eyes

how from the hollows came the cry

it is apparent now in a way a child refuses

blowing her rage with swollen cheeks

as if temper lost her place in a world of shut doors

why wasn’t I kinder to you?

why did I try to compete when all you wanted

was respite from the terror of being

Joanna