Revelation

I have little family but I have an aunt. My aunt reminded me today of the prayer of St. Francis. To give to others what you most need. She is not a Christian but she said it’s an apropos relative to karma and that awareness kills karma, once you learn the reason for something, it has no power over you.

Years ago I would not have imagined my aunt, whom I was close with as a child but did not see as a young adult, would be such a guiding force in my life. She told me people come into our lives, even those who damage us, as much because we ask them to, as they want to. That doesn’t mean if you are victimized, that you ‘asked for it‘ (you didn’t) but you play a part. Not meaning you are responsible, but you are not outside of the experience either and when you see that, you can see the flipside of the trauma and the value of the lesson.

By lesson, I do not mean, if you are victimized, that you are ‘being taught a necessary lesson’ because who the heck wants that lesson? But if you experience it, there is a way to turn it into a positive. I wholeheartedly agree. My dear friend Susi Bocks and I talk of this often.

I admire my aunt very much. I was always told not to admire those whom I have and they were open to derision by people who felt it their place to judge. But I’m listening to my gut on this, and I know who I admire and why. I feel it is not my place to judge, it is my place to be a positive thing in this world. That often helps me personally too. I admire her because she has literally gone through hell and not only succeeded, but flourished. She is one of the wisest, brightest, most likable people I have known and it saddens me that I didn’t know her as well earlier, but I’m so glad I know her now.

My whole life, I thought if I did something wrong, ‘karma would get me‘ and I had some fear related to that. But nothing good comes from fear. I now see that we have some power over karma, that it isn’t this force that can wreck us if we slip up, but something we can engage with. By being aware, we can play a part in how karma manifests. After all, we all make mistakes.

One of my ‘mistakes‘ I thought, was letting people into my life, who my gut told me were not healthy for me. I did this relatively recently and deeply regretted it. From the start I knew it was a mistake and the person was not who they said they were, but I felt sorry for them and wanted to help. Rather than regretting this and believing my having to walk away from them, as they became more unwell mentally, would lead to some karmic rejection in my life, I now see, I let them into my life to learn a lesson.

The lesson was I am not the same person was I was at 20 even if I didn’t realize that until recently. It would seem obvious? But in many ways, I focused on how similar I was to my 20 year old self. It’s only now, I see how different I am. My 20 year old self would have gone down the rabbit hole, would have pitied that person until they had power over me, and led to bad experiences of narcissistic personalities trying to dominate and control good people. I wouldn’t have walked away because I would have been triggered by ‘abandoning‘ someone.

The person I am today doesn’t let people do that.

Not long ago I felt if I turned someone away who was pushing my boundaries, I was abandoning them the way I had felt abandoned. I see now that if I carry this martyr complex of being abandoned, around as my yard stick, that’s what I will attract. I also see that from abandonment comes positive things like, compassion, and being a good friend and learning to do things for others because I wanted them done for me when I was young (be the change you want to see and all that).

When my mom initially left, I did not blame her. I understood her needs. I still do. When she rejected me later, people told me I should hate her, because she was ‘doing it again.’ I defended her and said: No she didn’t reject me then. it was what she had to do. I believe this, especially as a feminist. As for now? True, I can’t explain it. The reasons she gave didn’t seem enough, but as I have learned, what seems ‘enough‘ is subjective. Likely for her, it was the last straw. You may ask; What could you have done that would be a last straw? But it’s not about actual wrongs, so much as perceived wrongs. If she perceived things I did in my childhood, to be a litany of wrongs, there could be a last straw. My therapist said this wasn’t true, as at some point people have to do the right thing, which she believed was being a mother to me, but that’s a judgement statement really, as not all of us are born to be mothers.

I don’t hate my mom, I never have. I don’t even think she hates me, I think she just can’t stand me. Which isn’t the same thing. And whilst yes, it will always hurt, especially if I outlive her, I know she did what she had to do (to live well) and I don’t put her in a demonized role, where I play the martyr. This frees me to live my life (yes, without a mom) and be glad of those positive things I did get from her (and there are so many). Literally a day doesn’t go by when something she did/said doesn’t cross my mind in a positive way. I may have wished for her approval, but deep-down I know I am every bit as good as she and do not need anyone’s approval to see that.

Going back to recent events: Narcissists especially, know exquisitely how to push boundaries, they are fat on the idea they’re terribly clever, when in reality they’re following a trope that most Narcissists follow. Often a Narcissist will disguise themselves as an empath even as they are the complete opposite. When I began to feel uncomfortable with intrusion and daily pushed boundaries, I bought into the idea if I did something I would: 1. Hurt them 2. Be incongruous to my ideas of being supportive.

I have learned that while I want to give to others what I most need, as a form of being that change I want to see, and a valuable human being (defined as, someone who helps others and cares) I don’t have to take it to an extreme. It is alright to step away from someone who doesn’t respect me. When I did, I was proud of myself, but they continued to disrespect and demand. Since not being in touch I have felt myself again. I didn’t even know how much they weighed on me until they were gone.

Those of us who do care for others, especially those going through hard times, through no fault of their own, are particularly vulnerable to abuse. When you carry your former abuse with you, you paint a target, unwittingly. Whilst it may be hard not to see through that abuse lens, I see how if I continue to define myself by my losses, disappointments, regrets, sorrows, I will probably live in that place.

This may seem patently obvious to those who do not struggle. But before you judge me, consider, when you suffer from depression it is hard enough to move through the world, let alone think of others, or do the right thing. Coupled with health issues and no family, it is easy to fall into the woe-is-me trap. I am endeavoring to do this less. I can’t say I will stop doing it, or not fall backward, but I am trying. That’s actually all I can do.

As for Narcissists, stalkers and people who play mind-games. Thanks to my aunt I think I have the wisdom to recollect who I was years ago, a strong little girl who gave to others, what she had needed, out of a pure heart. And combining that with an adult who knows people can abuse that kindness, have more boundaries and safety-guards in place, to prevent being taken advantage of again.

You make your own karma. I choose to make mine by caring for others, but not letting them trample me. Hopefully, as we give what we need, we also receive. I believe this. Having met some wonderful people here on WP. Thank you all.

(This doesn’t mean I’m quitting writing out feelings, good and bad. No recovery advocates shutting down those, they’re better exorcized).

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Blooding

I made myself a promise I can’t keep

to stay steady, even in times of grief

not obey my gut and flee, bare-foot

into thick forest where birds

never rebuke

not to climb from shaking boat

wet wood and mold, scarred paint and

many gentle hands

cupping despair in her once tree lined womb

ever tempted to fling off effort

abandon the temple of people and their

admonishments

those truthful kindnesses flung back in reproach

by those who have no use of you

standing like husks by the road

waiting to snag your heart to shreds.

The woman across the road lifts her shirt

stuck slightly with glue from hospital monitors

a strange gel they affix electrodes to

when they’re getting ready to cut

she fills her chest with the congestion of the late hour

burning in filament

like fire birds finding song in dark

her dream is to be whole again

not lopsided, scarred in rivet and rent flesh

by hands that delved into her bones.

All my life I have observed

cruelty and condemnation in

its varied shadow forms

and marveled at how, little we pay attention to

the necessity and sincerity of kindness

instead we humiliate it

as if we were telling a child;

stop crying, stop being a blubber mouth, grow up

get some backbone, stand up for yourself, fight back!

Mistrusting those who stoop

to pick up your fallen groceries,

ask how you are, give what they can

though it be imperfect, irritating to

the red welt of anger surging in

collective consciousness, waiting to strike

who needs gaslighting? When we have

a veritable volcano, ready to turn

hearts into stone.

I knew a child once, who

fought well, she wore split lips like this seasons color

and her eyes saw in the dark

wishing to change the indifference she observed

when adults stepped on toys and did not

mend their breakage

that same child grew up into a flawed but kind adult

who wished many times

she wore a thicker armor

for the chill of strangers

has never borne fruit nor become easier,

as if you wore

sewn neatly to your chest

a scarlet letter

made of nothing more than

the dye of words

that look so very much

like blooding

(blood•ing (blud′ing), n. [Chiefly Brit.] British Terms (in fox hunting) an informal initiation ceremony in which the face of a novice is smeared with the blood of the first fox that person has seen killed).

FortuneTeller

People didn’t care

Just like with the Nightingale

The dead bird outside Starbucks

Didn’t warrant consideration

His feathers mottled by hot pavement

I felt

Bad I hadn’t noticed at first

But I’d been watching you walk

And recalling the depth of your coffee eyes

Whom of us lovers, has time

For dead birds

Finally a man thinks he’s brave to kick

Feathered corpse off to the side

Indicative of these times

I thought of the Happy Prince

Giving away his gold and jewel eyes

Enlisting a little bird to pluck

His riches to give to the poor

How I read that in school sitting

Elbow to elbow with sloe eyed kids who

Scratched their dry elbows raw

And the very same week we came across a dead bird

Its grave still beneath the weeping willow

Fastened by a Palm Sunday cross we’d kept unbroken in a book

Where children learn almost by hook and rook

Whether to practice compassion

Or not

I said to you; Oh look, it’s a poor dead bird

I wonder why it died? As if flung from the sky

And your eyes were hurt just as I knew they would

Because you are a grown child

I’d be bound to love

And we’d bury birds together

In every place they fell

Even if only a few care

Beginning in the playground

Watch them

Children will show you

Their future character.

Balm

Just when you constructed your best notion of life yet

little occurences surprise, like rain on your neck

she is a woman of verdant verbena vitality

she lives in the tropics with the song of Finland

angels arrive, winging oceans

her voice wrapped in this time and others

lends a balm, sincere and lasting

like a fairy touching glass

turns dream to day

(For Raili. 💓 ILU.)

Of a child

When did you stop thinking

Your bike would be cold out in the rain

Your fish may feel lonely in its bowl

If you missed a step the pavement would swallow you whole

When did you stop caring?

If teddy was wrapped safe in his bed

Or crying over the story of an orphan, ask

Can we help them?

When did you cease

Being, that person?

I think we grow less up than down

If children’s hearts contain truth

Each year we move further away

Let us move backward then to find

The next step capable of returning

The adult to their former compassion

Growing toward not from, the child who asked

Will the ducklings miss their mother when they are grown?

Will you always be here to tuck me into bed?

If I pray for granny in heaven will she visit us again?

When I grow up I want to make all the sick children well again

And I can, because I have the pure heart

Of a child

Full circle

My neighbors and I played down by the two deep ponds, circled by hedges

warnings unheeded, crashing through nettles into leach infested waters

our Gallic faces screaming in delight at frog spawn and plump lily pads

one sister, a redhead with gap-tooth grin, the other darker, like late season honey

who knew then? Among the crags of the Pyrénées-Orientales, with their Catalan tongues

we’d split and divide like wheat, losing touch, floundering each, to find our way

as kids, our favorite game was building tepees, wearing feathered headdresses

many years later, sitting in a park in Ontario, I met an Ojibwe mistreated by the state

we sat beneath banners and he told me his Algonquian speaking father was full blood

how his people killed their Inuit neighbors and lost their totem in broken alliances

from this he said, they learned, honesty is the only worth a man possesses

his mother was a French migrant, from Perpignan, on the Spanish border

the very same town I first learned to dance, to make it rain, or so I pretended

I wondered, if somehow fate had flung herself in strange arrowed pathways

all leading back to tepees and kind men, who felt mercy without recompense

since I left and became an immigrant, the gentlest souls I have met, carried

Native American blood in their full cheeks and mercy in their hearts

reminding me of daubing my own face with white stripes and how

we never had cowboys or guns in our games, just long striped feathers

and the goodness of children.

 

(For B, Mark, Jean, Crystal, Lane & Jack, who carry the blood and make it count).

 

Six Months

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Step outside

The doctor

who is 47 and wears a baseball cap

she doesn’t look her age, even her hands are unlined

but she knows her stuff, telling me, it’s a virus

got into you, maybe by the loosest thread and working its way up

attacked your spleen like, a well placed fist will split even hard skin

opening up secrets, spilling them like spaghetti squash, reveals its jewel

thumbing through test results, her eyes raised imperceptably

we both joked at the irony of finding a virus, good news

by then I had, a long list of debtors, thinner wrists, curled with many knots, my mouth was parched from staying open

who knew I’d learned so well, the art of begging and beseachment

and the phone, if it were not disconnected, would not have rung because I’d found out 

those who stand in faded ink on birth certificate, are not interested in, the lurch of misfortune

you see, some people, they need warm weather, even in Wintertime

and cannot abide, a cold chill or sudden snap

and I, poor dear, had quite broken my luck on the roulette table, as it spun

a soft sound much like the running of a bath

my turn to fall

their turn to turn, face away, pretending, such misfortune doesn’t happen

they are acrobats of self-deception

I don’t condemn it

it gives me the outline of which to begin, a new family tree

it will not have many branches, perhaps will look deformed

but as the arroyo dries in hot Summer, lines leave scores in red earth, pointing a way for journiers

and there are people who come

from almost nowhere

bringing solace

like a well tended light, burning from animal oil

keeps alive, that creature within us

needing, oh so needing

I touched them, with burning fingers and blistered lips

I couldn’t form the words to say, how much it meant

walking in their step and how

the measure of their coming lifted me

from a place i’d never been nor wished to return 

emptiness is not, an acquired taste

the doctor, she can attest to that

I see grief in her stride and hope in the words she feeds me

as we create over the loom, something resembling a coat

to wear when the weather gets cold

and you have to step outside

The best of tales

I fell hard, such is the consequence of a colorful lure

Flickering in shallow water lit by hope

the world was messy, like a thirsty rag soaked with blood

still not gaining sustainence

sickness an albatross, urging me to frail edge

I had yet to learn that words can possess no value

be simply pretty things, we are misled by like Xmas baubles, turned over to reflect pattern

how can a writer realize, words can be emptier than a hollow tree?

people who write them, do so with convincing candor all enveloping like hard sales pitch

it’s impossible to believe they’re just words, without meaning, or worse, deliberate opposite

of truth, that sparten ideal, sucking ice for nourishment

when the wet ass hour comes, and it always comes

those who stay, are not those who wrote long entreaty

not the flatterers, cake-bakers, trumpet players

they are usually the last you’d believe, quiet, unobtrusive leaves coloring your floor

when your loud friends have quit you, it is they who step up and inquire

are you okay? Do you need help?

I learned this directly, as if fed by a poisoned spoon 

the ache of losing louder voices and reward of quiet ones, whom you didn’t believe cared

because you listened for the caucophany and wordsmiths who

know their trade as story tellers, so very, well

and I, who also wrote stories, fell hook, line and sinker

for the best of tales

the one where it’s all about them, and if you fall short you’re out

why it took so long to see, the value of things as they stand

plain in the rain, but firm of foot

is down to the fanciful nature I had

before damp veil was torn off and sickness

cast her long net and kept you underwater without purchase

in that drowning you learned, the only lesson worthy of a mortal

it will not be those who come, bearing gifts, cherry lipped

it will not be those who say; you are wonderful, adorable

it will be the person who seems aloof and speaks volumes

because sometimes a story teller is just that

a teller of stories without depth, milking our need 

they do not stay when you reach out, just the length of the tale

long or short, it always comes to an end and then

they go on to the next book and you are left

dangling with pretty words, tied in useless bouquet

now I don’t know what to call myself

“recovering” of some sort of fairytale lure

and in that recovery I find the simple joy 

of people without tall stories
 

This is to thank so much all those magical folk I did not know would step up and to acknowledge those who spoke loudest and did the least by way of mercy. Each to your own I learned and I grew.

 

Constancy

Oft maligned

Great virtues found

In the small

Not opening a wallet

Nor showy endeavor

But quiet, steadying

Loyalty

Found like a blue nest

In a grey forest

Constancy

Is a clear bell

Ringing when others have only

Tooted their own horn

She waits

After the herd have had their say

And empty promises lift their helium mouths

To the great void

She stays

When it would be easier to flee

Safer to avoid

Quicker to cut off

And I was your constant

That is why you loved me so much

Though you didn’t recognize the steps

We both took

When it came time

For my turn

You bared your teeth

And took a portion of me

Breaking trust like

Water can never be held

In cupped hands

You slipped

Grateful for escape