A girl who used to look forward to dinner and a movie
The simple pleasure of walking hand in hand with stillness and a harvest moon
was handed a poisoned fortune cookie
caught a virus, and that virus crawled into her stomach, like a ray gun
it changed the waves until, her stomach like arrythmia of the heart
was fitful and lurched
she was instantly sickened, from a person of health she turned
her body shut down and said
no, I don’t want to eat
dimly she remembered the days
she would lust and long for food
her appetite completely gone, the acidic growl of her stomach
held all dominion
she was slave to nausea 24/7
like a merciless dictator it left her no peace
even in the lingering hours of night
she woke bathed in sweat
her stomach somersaulting in wicked mirth
such a terrible feeling of imbalance and sickness
her hands gripped the sides of the toilet
she prayed until her head ached
for nothing could have prepared her
nothing assuaged the constant torture
every day of every day
she began to imagine
fondly like a fantasy
and then when she realized what she was doing
she would cry until the crying
made her sicker and she had to stop
bottle all the anquish up
but there was nowhere to throw it, or store it or let it free
it built higher like a fortress
locking her out of life
days, weeks, months went by
she was captured between glass
unable to eat or drink without throwing up
or wishing she never had to try to chew, force food in green bilious mouth
perhaps it was punishment for a former life
where she was greedy and ate too much
or tormented the Fates with the heal of her shoe
it seemed definitely karmic punishment
just as her will to live, ran thin and irregular
like arrythmia pulses below the surface
that would not quiet or return to normal
disturbing former calm we take for granted
a girl who used to look forward to dinner
sits at a quayside cafe, drinking empty glasses
eating plates without food
staring at turbulent water rise and fall
waves crashing without sequence, into wet wood
holding back or pushing forward, who knows?
one day either the sea will admit defeat, or erode everything
and that is how I will be free, she says
to carefree birds overhead, yet to be struck down
they know not their good fortune
They said, keep the blinds drawn, what we have to say, isn’t good
they lay her down on a white sheet and beneath, the hammered metal hummed
the bulb in the middle of the room, behind linoleum, sung a hissing song
their white-coated pluck and scratch, indifferent and sterile, she was just, flesh and blood
another in a long line of patients who, largely were forgotten, consumed by a machine, uncaring of individual
she could feel the dried corners of her eyes crack, as she looked left and right
someone once told her, adult survivors of abuse, find it hard to relax
they are always looking for what is crawling out of cupboards
she didn’t want her past to run her future, but now it seemed, her future was in doubt
never before had she felt so alone
the petty bravery of moving countries, seemed a facile thing, for children who didn’t yet know, true terror
surely it is easy to be brave when you have no war, and are just posting letters
she lived like that for so long, running from childhood’s sadness, enjoying the wide open space of adulthood
thinking she had all the time in the world, surely growing older was for another life
it wasn’t entirely selfish, she did her part, but there was always the tendency to want to make up for the past, by living without a care
and then it was no longer that way
impossible to ignore, unable to let go of, she was swiftly consumed and irrevocably changed
even if tomorrow the cloud lifted, she would never walk as lightly as she used to
the power of naivety, ignorance is surely, our dearest friend
now her heart beat fast all the time, unable to still, the surge of emotions inside
she was a rabbit in her burrow, smelling fox
she was no longer the quick silver of a girl, without terrible knowledge
days were unbearably long, and serious, like the frown on an old man’s face
they spoke of compromise, a series of steps, faltering and bursting apart and trying over
it was as if all of her was removed and pummelled into earth and made to rise again
never was it more silent, never did she wish for the phone to ring and something to let her out of the nasty trap with jagged mouth
words are just words, she could have said; I am strong, I am going to fight, but in the next breath she may
simply not be able
and that lack of, that inability, like a prison, or a sudden dismemberment, was, a kind of horror she’d never been creative enough to imagine
like being stolen from yourself, and hearing in the distance, the sound of children dancing
to your favorite song
if life is indeed a battle, she thought, this is where I need to buckle down
put aside my tendency to want to climb out of the window and skip the lesson
stifle the longing to run fast, in the opposite direction
everything so far, had brought her to this point, it wasn’t what she’d imagined
instead, she’d hoped by now, she’d have found her groove, begun as humans tend, to build her fortress
it wasn’t time yet, it wasn’t nearly time yet
and all the days she’d squandered, thinking there would be more
all the long drawn out machinations, to position herself and be ‘responsible’
denying the lustre of living
she’d put off joy so many times, in favor of ‘sensible choices’
where were those now? She berated herself for not having taken
more vacation, more experiences, that glass of wine, danced on that table top
she worked for a future, she may never get to experience, sure she felt bitter, angry at her lack of insight
though most believe, we’re never ready for bad news or, the fall of favor
we think we predict worst case scenario but that’s only an anxious mind
seeking to control the uncontrollable and unknown
nothing prepares you for a premature curtain fall
nothing shores you up to deal with catastrophe
we muddle through or we give up
those are the only two ways we journey
when the wet-ass hour comes tolling
she felt a grief for her bad choices and wished, like others she could have no regrets
it is hard not to regret when you’re cut off from everything
difficult to look forward when the present is biting at your ankles
she wasn’t one to pray for herself
but she did now
she prayed for the strength she felt she didn’t have
she prayed not to feel so isolated
cried thinking of how many before her, went through this darkness alone, their hearts aching to be cared for
she was a little girl again, looking for her mother beneath furniture
seeing her in album covers and from the top of buses
that woman had her mother’s eyes, large and dark
that lady’s figure is slim and reedy like her mother’s was
at night she wanted to feel the way she imagined a child does
put to bed and told, everything is well, you are safe
if she’d had children, she’d be saying it to them now
but life threw her a curve-ball and she ended up reproducing only
empty rooms collecting dust
perhaps it was for the best, now that she’d sunk so low
for how could she care for anyone, when she could not for herself?
if everything has a reason, she wasn’t sure of this
to teach her gratitude? To punish her for lassitude?
if there was a God she hoped, somehow to end her suffering, even by means of eternal sleep
but she felt bad for praying when so many, suffered far worse than her, and how they coped, she did not know
only that she had to try each day to keep going, in what direction was unclear
she wasn’t sure of the sign-posts or meaning, it was too easy to let fear, guide her way
so many things needed to change and yet, she was tired, so tired of fighting and being scared
they say those brought up unkindly, learn to be strong
she didn’t feel strong at all, she felt like only a thin wind, kept her from collapsing
and all her plans were thrown in water, watching the ink bleed out, with nothing left to find, but papier-mache
her grandmother once told her, out of nothing you can build, entire universes
she tried now to imagine a place, where she would be restored
where all the things she still had to do, remained possible
surely you can tell when, the end of the record is over and, it’s about to go quiet
she hadn’t been able to, she’d one day been carrying her dancing shoes, across the newly waxed floor, her eyes feverish with anticipation
and the next, swallowed by sickness, left without curative
only the static of a cold room and a script for patience
she’d been spat out of the system, left to flounder by road-side
how different, she thought, from childhood where, we do everything to protect them from fear
sewing toys that will keep them company at night
mobiles to send them to sleep, songs to ward away nightmares
and at some eventual point, we decide they’re ready for the real world
full of savagery and disregard and people who are supposed to help
but are only doing the bare minimum
is it any wonder we flounder, and miss a step?
looking around in wide-eyed fear
mouthing the unasked question
is this what it feels like, to be real?
Listening to the words
In my aching chest of wingless birds
I am afraid
Today I woke and prayed
For a better day
And it didn’t come, though I heard the horses
They were galloping fast, they did not stop
How momma? Do we stay grateful? For every given hour of precious breath?
When scythe of hurt cuts so well and wraps the days away in little vials of hell
How to live in the present, when presently is torture, crushing her toes on pointe?
I try momma, I break the fine bones in my hands in supplicate, my arms making sundials on wanting earth
I ask my toy penguin
He eyes me with the same glass eye he has been using since I was little and he saw me break
And turn to seed and grow back into a girl who recognized he was real
And I know if there were a flood
I’d save before myself, that glass eyed toy
He has seen my days in ways nobody else, could or would
Though he is stuffed and inert, also the witness to each tug of war, his little cloth heart
Beats like a stray moth against my window pane
He tells me to remember
Despair will pass
A bad day is not forever, and so in time we’ll learn to hold, tighter
The unbearable and it may turn, like shaken snow globe, upside-down, white obscuring foul
Some slow imperceptable change of season, a sign, the very beginning starts with one
If he could speak and he does
He’d tell me to be brave and wear my best dress for the clouds cannot and will not persist
Take comfort in those smallest things
It could be one minute in an hours slow turn of hand
It could be one moment out of three weeks broken by tired cries
I am on my knees
I long for peace
And the quiet of memory reminds me
You have been here again and again
You have risen to answer the entreaty of a heart still beating
Longing to be released from her sentence
And if you look closely
There is still
A desire to overcome with the wish of a river to capture rain
Stronger than anything you’ve ever experienced, my penguin knew before myself
He is who I’d save, if the world exploded into flames, curling value to cinder
I am reminded of what I can feel by his capacity to shake, my despair out of her plan
To hang by tree and catch late afternoons air, as dead as last night’s terror
And I stroke his face
Wishing with everything that stuffs and fills to become me
To be free to laugh again
I promise him
To be that girl again
I am aware of the acrid taste in my mouth
rolled under yellowed paper and stuffed with dust
I am aware of the dusk and the dawn
as it begins and falls outside of my existence
for the confined are the ones, who most seek the light
held back by the devil on my back, digging his rusty spurs
of who I was before, and who I may again, become
Restrained in abayence, watching the spin of twitching world
was there a time yet? I did not sicken at the mention
of nutrition and sustainence?
or energy enough to power through, whatever ailed me
now the vampire drains me of enough, I can only watch
in flickering shadows, a dance of memories across my jaundice
so much has come and gone in this short time, where a day
where an hour of pain is like
a life time without
as if cruelty stretched it out
until you could hardly see
where it began and where it stopped
or maybe it did not
end and instead
drags out, again and again, as if set on repeat
wake up, sicken, do the same until all you see
is the specter of yourself, treading lost time
and the taunt of health, is always a little too far to reach
yet you must try girl
yet you must seek
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.
On those days
Where waking it takes all
To muster gratitude
Yet we do
You and l
Find the fox path through thicket and dence bramble
Where light footed children before us ran
Soft in tow, elongated against shadow
Spilling their amusement like hay seeds
And stubborn burr, clinging to wool coat
Just in case it should grow cold
Then from our tree house
We’d forage for kindling
And brighten the alcoves of elm and foxglove
Just like when you were gone
Sealed in a room like you’d boarded a ship and steamed
Through hectered expanse, combed wild with distance
So far I could no longer hear your metronome
When windows flung like outstretched hands, you played Eric Satie
Able to conjur emotion without perfumed love letter
When all I had was a supple back and trained muscles
Dry with chalk, head bowed, waiting to mount and vault
Gymnast or star catcher, seems likely both
Such peacefulness in throwing out fears
With a twist of wrist, a spring and leap
When you do not hold back, that’s when you see
This world’s underpinning like a great silk train
All the seasons following in ivy headdress
Who knows the mood, a temperature of pick pockets
Punished or saved, sometimes hard to tell
We are like an indigo building storm
When weather is calm you can never tell
Invisibly, out of sight, burgeoning swell
Blowing cracked cheeks, gathering momento
If you keen into white noise, leapfrogging over din
Whispers on wind, gentle turns to fierce
We are so like our Creator, twisting at whim
Or by design
Either has the thickness of a stranger’s hide
Not our timid hearts, cowering at first lighting strike
Out of time, urging forward despite ourselves