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
the sun will come in and make of my peace
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
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
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
even a death sentence
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.
For anyone told they have Gastroparesis, I feel it’s my duty to give my own experience so that should you have a similar experience you can avoid some of the time-wasting that I experienced and get help faster.
You may not have Gastroparesis.
Equally, if you are seriously sick and your symptoms are throwing up, intractable nausea and stomach pain, this may help you get a diagnosis.
In the days before the ‘gold-standard’ Gastroparesis test which is the Gastric-Emptying-Test (GET) doctors tended to rely upon an EGG of your stomach to measure your stomach waves/contractions. What an EGG does is tell the doctor how your stomach is performing not in terms of motility so much as spasms and waves.
Nowadays they talk more about motility and the bias is toward slow motility. This means when you go and get a Gastric-Emptying-Test (GET) they are biased toward thinking you have slowed down motility. Although women’s stomachs are much slower than men genetically, and although people are different in their emptying/rates of emptying, there is a bias toward thinking stomachs all empty the same way.
Because one size doesn’t fit all, it’s important to find out what your stomach is doing. It isn’t sufficient to be told ‘your stomach is emptying slowly’ as this is usually based upon a short test that doesn’t capture the duration of your stomach’s experience with food. The reason it’s important is because when you go into the ER with symptoms they will often only run a GET for ONE hour. They will tell you that if your stomach hasn’t emptied 50 percent it is emptying slowly. That isn’t true, a stomach can take up to 4 hours to empty and you also need to know if they are referring to the top portion of your stomach or are also taking into account your small intestine as that is part of the stomach in terms of function.
The best GET test is to ask for a full four-hour test, and for them to photograph your small intestine as well as your stomach. Only then can they definitively say that your stomach is slow emptying. If that is not done, question the diagnosis of delayed emptying. In this day and age of Diabetes, it is a common bias that people are more likely to have delayed emptying than fast emptying. (The reason the EGG is a less popular test is also because doctors cannot make as much money from that test as a GET).
Furthermore, it’s not as simple as ’emptying’ because the Cajal cells in your stomach are connected to your brain, they have 70 percent of the serotonin in your body. In a way, that ‘gut instinct’ is accurate, and as such, you ‘feel’ things via your stomach. If you are throwing up, feeling violently nauseous and dizzy and have severe IBS symptoms this can be from the mis-firing of your Cajal cells in your stomach, that are overreacting and telling your body not to digest or to over-fast digest your food. This often happens after exposure to a VIRUS.
Here’s the real problem. Typically the medications you will receive will be medications for moving your stomach (prokenetics) that have bad side-effects and will make you sicker if your stomach is moving too fast. If the biased assumption is your stomach is moving too slowly, (not emptying fast enough) then these prokenetics will speed your stomach up but if your stomach is moving too fast this will exacerbate your symptoms.
I saw three Gastroenterologists as well as some on call in the ER. The first Gastroenterologist ordered very expensive tests (Colonoscopy & Endoscopy) then accused me of being anorexic (I had lost over 20 pounds due to throwing up all the time 24/7) and said I had Candida. He prescribed heavy-duty antibiotics for a month, when I told him I would throw up the antibiotics he insulted me and said if men in Vietnam with their stomachs blown off, can swallow antibiotics I needed to.
I went to see a second Gastroenterologist having no faith in the first. She was better, she said about the Cajal cells and the mis-firing and believed it was caused by a virus. She gave me a 40% chance of getting better but said I needed to force myself to eat more and prescribed me prokenetics x 3 a day and anti-anxiety meds x 3 a day as treatment (you get very, very, very anxious when you feel this way because you are throwing up non-stop). I had taken prokenetics before in the ER and they did nothing or made me worse, I told her that but that was her treatment. I decided after reading about prokenetics and how they have irreversible side-effects that I would not be taking them x 3 a day as that was madness, likewise with the anti-anxiety medications as I knew how addictive they can be. At this time I had had a GET for one hour so did not have any proof of Gastroparesis or even slow-motility but this was assumed to be the case.
The third Gastroenterologist explained things differently.
He looked at my symptoms and said that I could not have Gastroparesis because you would not have daily diarrhea with Gastroparesis as literally your system shuts down. I didn’t have early satiety, (feeling full quickly) although I found it hard/impossible to eat because of the 24/7 nausea. I threw up but not all the time, and I didn’t feel worse after eating (but I didn’t necessarily feel better either). Based upon symptoms he ordered an EGG rather than subjecting me to more radiation and because he felt it gave a more accurate picture. The EGG was quick, safe and painless. The results showed I had fast gastric arrhythmia.
What gastric arrhythmia means is when the rhythm of your stomach which usually is in three waves, gets disrupted, and causes extreme symptoms like 24/7 horrific nausea and throwing up. If you have diarrhea that’s a really clear sign your system is ‘dumping’ IE going too fast, and you develop a host of issues including bacteria over-growth etc. This doctor said prokenetics would worsen gastric arrhythmia of any kind but especially if you are too fast. He prescribed a Tricyclic Antidepressant at a hugely lowered dose (typical dose 300mg, he gave me 10mg) as they work on smoothing the muscles in your stomach, which slow the spasms and in time, re-set your system.
It is worth noting, gastric arrhythmia is unique in that it tends to feel a lot like arrhythmia of the heart, as the stomach is not far from your heart. You cannot tell that you are not having heart arrhythmia, which is why I said I felt I was the first time I went to the ER. Typically you will have very bad anxiety which is caused by the feeling of constant arrhythmia coupled with nausea and all the other symptoms. This is not your mind it’s actually your stomach! Heart patients with severe arrhythmia often experience crippling anxiety due to how they feel physically, the same is true with gastric arrhythmia but it is less well known so often doctors will assume you are suffering from some type of anxiety disorder until the results come back.
My doctor told me 90 percent of his patients got over gastric arrhythmia. But the key is proper diagnosis. I read online about many people who had gone through months of suffering before being properly diagnosed. It doesn’t help that when you do searches, Gastroparesis comes up a lot and many times, with cases that are not true Gastroparesis. It is worthwhile noting that Gastroparesis really means a stomach that doesn’t move. If you are going to the toilet, if you are able to eat something every day, your stomach is moving.
People with true Gastroparesis get big balls of undigested food trapped and sometimes they throw them up or have to have surgery to remove them. People with true Gastroparesis can’t eat but a few bites of food without being full. Gastroparesis is considered incurable, which isn’t true as if it is caused by a virus it often will go with time, but you wouldn’t know that from searching even reputable places online (the Mayo Clinic and many others say it is incurable and you have to ‘manage symptoms’ and the only way you find things about it being curable is when you add ‘viral Gastroparesis’ then there are many articles about remission and cure).
If you have Gastroparesis you can be cured with time. But if you have some of these symptoms and not all of them it is quite possible you do not have Gastroparesis and your doctor(s) are being lazy by using Gastroparesis as an umbrella term. When you don’t know anything and you are sick and scared it is very easy to just follow what you are being told and get really bad and inaccurate care.
If I had known about gastric arrhythmia and/or the nuances behind gastric motility problems, and why they are caused, I would have had a lot more hope and targeted treatment from the start, I may even be better now. But instead I spent a ton of money and fretted and worried and was so sick for months, before I was even correctly diagnosed. Now I am taking the right meds and I am hoping that they will cure me but I also know I have spent many months in agony which could have been dealt with better.
To help others, I want to make this clear. There is bad information out there, much of it negative, when you are sick you can really lose your mind reading the conflicting and negative information out there, so I’m trying to put out some that will help anyone who is experiencing these things.
IF you get sick like I did and you experience extreme chronic debilitating nausea, if you are throwing up, if you have diarrhea or get really bad IBS symptoms out of the blue, first things first get checked for common viruses like Epstein Barr, Shingles and NORO. If you come back as having a virus OR you experienced viral symptoms prior to experiencing these symptoms, chances are a virus caused this. It basically kicks your body into overreacting and like an autoimmune disorder, you develop some type of motility issue in your stomach almost overnight.
This is very different from developing it because of an autonomic issue or post-surgery or if you have Diabetes. Even in those cases, sometimes it can be cured but there is more of a physical reason for why it happened and it is not usually as rapid onset. Knowing why it started is important.
Second, once you know this, if your symptoms are very severe it may be worthwhile having a Colonoscopy and Endoscopy because it can rule out other things with similar presentation. However, they are expensive so if you are not able to do this, or do not wish to, then ask for a four-hour gastric emptying test or an EGG to be performed. The latter may be harder to find as it is only found in selective Gastroenterology clinics whereas gastric emptying tests are done everywhere. Ideally if you can find someone who will do an EGG that’s going to give you more complete answers. You can google your city and gastric EGG.
Third, find a good Gastroenterologist. Google ‘good gastroenterologists’ or ‘stomach motility gastroenterologists’ in your city. How I found my good one was by finding that there was a Gastroenterology Research Center in my city and I asked to see the head of it. Even if they are not in your insurance you can request they be or you can pay out of network costs which are more but are usually partially covered by insurance. Call them and try to get an appointment ASAP if you say that you are throwing up and unable to keep food down they usually will take it seriously and see you quickly.
Fourth. When you go to see them take all your information with you and say that you suspect you may have a motility issue but you are not sure if it is too fast or too slow. If they ‘assume’ it’s slow, question that, and ensure your symptoms fit slow before accepting that diagnosis (if you have diarrhea it stands to reason your system isn’t slow!). Take someone with you who is a thinker, so that they can be your advocate. I have felt so sick I couldn’t think straight and having someone else there, helps when your brain turns to mush. Write everything down.
I pieced some of the puzzle together myself. I was proactive in finding a doctor I felt was decent. I tried even though I have been so sick at times I couldn’t even get up from all fours on the floor. Sometimes a doctor will have a piece of the puzzle like my second Gastroenterolgist, but they will still do something ass-backwards like prescribe prokenetic drugs (that cause your stomach to speed up) without thinking through whether this is logical and right.
The hardest part is many of the anti-nausea medications don’t actually help with the nausea, (I’ve yet to figure out why) but especially those with prokenetic properties if your stomach is too fast. In which your doctor should prescribe something that will slow it down but typical antispasmodics don’t treat the problem they just force your stomach to slow, so you want to ensure your doctor is considering a less invasive approach such as very, very low dose tricyclics. At that dose they have none of the harmful effects of tricyclic antidepressants and do not work as antidepressants but just help smooth the spasm and speed of your stomach. My doctor said it may take a while for them to work to reset your system, if I had known about them from the get-go I may be over this by now so as soon as you can, get on them.
I’ve been told I will heal. At times I find that impossible to believe this because I have been so sick for so long it seems like a cruel dream to imagine being well. But I hold onto hope because it’s what I have. And I feel lucky to have it. If someone had told me what I am writing here, I would have avoided a lot of pain and suffering. So I’m passing this on in the hope that even if one person is saved some of the suffering of bad diagnosis and bad medicine, it’s worth it.
If you have anyone you know going through something like this, show them this and if I can help them I will. It’s been the worst thing I have ever experienced and you do think you are losing your mind after months and months of it, but with the RIGHT treatment there is hope and we must hold onto that.
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?
is a color I cannot describe
a place I don’t fit into anymore.
Even if I am restored
things will be changed for good
for most of us there are times
that shape our marrow
could be in the form of torment
maybe sorrow, sometimes joy
often the hardest times leave deepest imprint
perhaps it shouldn’t be that way
we should rejoice our luck a little, usually too busy enjoying ourselves
to leave permanent mark or maybe, challenge speaks louder than mirth
it is easy to accept a good day like a hot bath
than deal with a bad and hollow foe
that’s when our quick is sharpened,the story of our lives written
on the tip-toe of endurance
and what if we do not want to endure?
too bad, shit happens, legs break, minds crack
we’re going to end up there at some point
better waterproof our leaking sides best we can
the ocean isn’t a forgiving mistress.
When I fell, my mouth filled with salt
even then I didn’t know how far torment, reached down
it was a well, beneath the sea
a second drowning
for those who long to be free above ground
shackles of the merciless kind
only then I wondered at the strength of others
enduring from such an early age whilst I
ran long in the garden, unawares, chasing butterflies without a care
thinking I knew real pain from a momentary hurt
I knew so little
just a moment ago and a life time apart.
I am a twin of my previous self
we stand on different sides of the same coin
I am submerged, she is still, basking in the glow of a harvest moon
sometimes I look over at her and feel such envy
anger for my lack of appreciation when I, was her
but you cannot lead a horse to water
you cannot teach a child what she must learn
getting stung on the principle, she discovers through pain
it wasn’t in my thoughts that I should be
the girl on the other side of the echo, pleading to return
I don’t know if I will be permitted
but should I ever, walk again without curse
it won’t be as the same person, but a mixture of two
once you’ve seen yourself and begged for mercy
everything alters and everything stays the same
it’s up to you to be mindful of what you learned in that maze of pain
I learned what we think of as hardship
is often just everyday life
what we believe is suffering
can be comfort compared to other lives
when we don’t think we can change
then we aren’t given a chance, we know we should have
it is in diminishment we find elucidation
it is in horror we see truth.
Let me back inside my life again
and I will not be the girl who, took the easy road
for she now knows, just how deep anguish can go
it is in the tangle of the briar
and the wormwood of old trees
whispering advice never heeded
by the youth who believe themselves free.
is a color I cannot describe
a place I don’t fit into anymore
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
The day will come
THE DAY WILL COME
when you fall and feel you cannot get up
and when that day comes and feels like it’s won
you will pull yourself
inch by inch, of broken spine
cry by cry, scream by scream
until you stand
and when that day comes
you will think on this and know
belief is half the battle
faith the other part
there is no room for query or supposition
let not the terrors a place at the table
the pure hearted know
healing comes from the soul
I tell myself this
at 4am over the toilet bowl
exhausted before I have woken
I tell myself this
when panic grips my chest like a thunder bolt
and whispers in my ear, it’s been six months
I tell myself this
when the person I was, is not the person I have become
but a whisper of what was
we have a choice in our fight
to take it, to face it, or to back down
and though I wanted to give up, though I tried to let go
I’m still carrying the smallest candle of hope
it is in the stains of your disaffection
the hideous recollection of your breakage
when you see through the ugliness that doesn’t quit
and pain needling you like it learned to knit
those fierce moments in between
they are yours
and the day will come
full and bright and brilliant
when you shall, reclaim yourself
Tell me, little wretch
Hast thou sufficient umbrage, daring to rend me void of powder?
As if a keg of dynamite were to unloosen its tongue
Lashing your sides with the fury of its imprisonment
Tell me little wretch
Do you really believe you have won?
The kitchen, the harth, the space, is unlit
Weak light, nothing stirring
She is as still, as a breathing creature, can be
Sound… is for the world, chasing beyond itself
Where girls like her, hold tight to bus rails, wind messing their hair
Where children cling to parents, shy in perpetual game
Where men stoop to kiss women, full cheeks upturned
Music and the chink of movement, gypsy motion
Color and the russle of long skirts, like painted fans
A sky as blue as country girls eyes
The haggle of time
A red river, carved by motion
She wore those days, like a red dress, loose limbed and free
Unknowing yet, bestial crush of illness
Jeering like envious stranger, swallowing thin air
She is as still as a breathing creature can be
Sound, is for the world, chasing beyond itself