Even the light
Testing the dura
Has no desire
Even the light
Testing the dura
Has no desire
Played for keeps.
Competition was her muse
She wrote her first book
Won the acalades she sought
Changed her face in surgeons chair
In the pages of her, I read quiet despair
A pervasive loneliness in loose leafed characters
They screamed on her behalf, when she could only
You, today, walking, lost
With large red dog
And small foot tattoo
You had the same shape
An edge to your corners, as sharp as spite
A quietude and a silence, sadness set firm in your eyes.
I wanted to ask
Or reveal what I already knew
In just having met, the corners and the distance
No match for feeling, across tow path
And into that personal space, where you laid your sorrow out
I smiled a great smile
Can a smile impart a hundred thoughts?
You passed, and the wetness of your loss
Felt like brief rain on my arm
Two strangers and a dog
It was as if it hadn’t happened
You reminded me so much of Patricia
And her emptiness, written throughout each story
You see … we recognize each other
As much as for who we are not, as our similarities
Strange bedfellows of perverse and solitary, mearly trying to tred water.
If I’d spoken more, I would have asked;
Do you walk through the high grass to see the butterflies?
Do you feel the sun before it gets too hot?
Will we walk in the same direction and in time perhaps …
Talk of how we came to choose, empty steps, over laughter
You never know
They could be everything, or perpetual stranger
A moment, and no more
Or the rest of your life.
Instead of pulling away, if you reached into them
Like leaves blown, will fall, one on top, one below
A path of many
As if some spectator diety laughed at the absurdity of prediction
For mortal souls
Never expected … solace often follows despair
Down a well beaten path
Where all colorful leaves have fallen and turned grey underfoot
She is the red cardinal, flickering like an lacquered fan opening, starkly bright against bleak winter sky
She is the tucked warmth of your bed, greeting weary limbs, needful of respite
A silver section of moonlight, glimpsing like thin nyaad at frosted window
She is the irregular beat of your memory, draining thoughts to drip wet til dry
A summation of a little life
Like a letter from an old friend, coming just when, you’d given up believing in serendipity
Yet she is there, watchful in the eves, of your blunders and taut anxiety
It is in the harmony of reconciliation, laying palm over palm, folding away pain, putting our best clothes on, even as we feel frozen
Walking through ice, glittering from dark branches and exposed tufts of miseltow
A tree filled with scarlet berries, feasted upon by tired ravens, huddled as one
The slow plume of smoke, a tang of burning wood and wet wool
Somewhere, something tries to survive
And pulling together like floundered ship, we tilt wildly and lurch against current
Holding on tightly, the ache in ourselves
Reminder that it is far from over
It may be sometimes grief steals our faith
And then, doorbell rings, a little light climbs in India ink sky
Some discovered solace, salve to thirsting soul, clamboring over emptiness and filling chill with hope
When shelter becomes more than solidity
Something bright in darkness
Warmth when cold
In the clasp of your arms
Timbered voice, felling fear
All around us animals stir, unseen
The switch of their fur, and meadow smell
As if time had laced herself backwards
We drift beneath spells
Your mercy is a red fruit at my throat
Throbbing against the thin trickle of hope
My eyes are dim in this evening
Where shadows appear to turn light footed
Swaying in our attachment to the finite
When all around, creatures cease without word
And new are born to cover the empiness before she knew herself lost
We have no prescribed place, or capture
It is as if nothing has roots and like the tumbleweed
Rolling beneath the smoky clouds with hushed song
Lets go of all that can harm, the vast solemnity
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.
You are the wonder of the world
a red man come from desert
you saved this girl from drowning in sand
pricked her lips with cacti juice
told her of the stars in your mouth
summoning sleeping giants to lie beneath us.
With cicadas, you wove me a blanket of safety
though you had nothing
you gave me all.
From the empty handed
comes the greatest gift
unfolding like paper water lillies
leaving stigmatas in my palm
the shape of echoing stars.
for being poor or empty handed
when your feathers are full and sunset lifts you high
the circumference of your heart
longer than a sincere word
taught me humility
and how to know
the tenderness of kindness comes often
from those who receive no thanks
for they are not rich
nor need those things to sustain their souls
walking with angels.
You are a man of your ancestors
truth in the words
as the bell chimed, you took me to be yours
pouring salvation into candles
lighting my way to freedom.
So many years I had been caught by the neck
twisting in the wind unable to escape
the trap of circumstance
and in one pull
you gathered me close and saved me
a hunter turned tender
for the fluttering of his people
bestowing goodness like late harvest.
From the empty handed
comes the greatest gift
before we reach heaven
we may have still
walked with angels.
Things greater than
Do you believe?
Do you believe?
It will end and you will
Out of your bed of pain and fear?
That it will be gone
Dissolved like thin snow or frost
A beautiful nightmare?
Vanquished are the ghosts
You will in time not
Recall the laminate corridors
Antiseptic sting and gag reflex
A night nurse plunging needle
The faces behind morphine dream
Your room mate gasping as if
Being ravished by herself
A chink of light through heavy curtain
A scarescrow angel, you kept the hounds at bay
And mark, in my heart, pressing jewels to forlorn crown
Each gummy bear, red, violet, purple
Like bruises and flowers lain slow
You visit me there, in the crook of my arm
Where anihalation takes her naked bow
You wipe my cheeks of salt, bestow your own token
Posies of disease, viruses for the clean
Small bird bones picked lean, glossy in bleach
They watch her take the boat too far from land and wink out
Like a smudge on the line between life and horizon
Ask her to turn herself around
Return to the ward, the pill bottle, the undergarment of her lurk
But she has already begun
Like fine powder
Moving on the swell of clouds
All around birds make noise
And drown out
The feeling that
She has nothing left to burn
But the thin blue line holding
Our faces out of water