TLDR is bogus / we should read, we should care and take the time

TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.
Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?
Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.
I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.
It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.
I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.
My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.
I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.
I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.
I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.
Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.
The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.
During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.
If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.
I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.
If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.
Advertisements

Fortune cookie

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

green

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

her death

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

sometimes imperceptable

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

For anyone told they have Gastroparesis read this

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.

What you really need

Bottles of pills fall from the sky

they look like Texas sized hail

each one comes with a promise and a warning

in some cases several

it’s a pretty thought to cancel the warnings and embrace the promise

I promise to ease your pain

I promise to lift your anxiety

everyone loves a restorative

even when the sky isn’t blue it holds faith

like a confident lover

the birds don’t know our fitful human world

they only understand song and flight

you’d like to be without gravity

it’s a small price to pay

looking at your life from up high

we treasure absurdities

then something happens to shift delusion

for what do you need of things?

when what you really need

is found in the wielding air

Papier-mache

e23b1d77a3144773d37a060c30b340b9--the-velveteen-rabbit-being-ugly

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?

It is in horror, we see truth

horse-2565584_960_7201262177708.jpg

Before

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.

 

Before

is a color I cannot describe

a place I don’t fit into anymore

 

 

To be that girl again

I breathe

Listening to the words

In my aching chest of wingless birds

They say

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