Wisteria

fb3902489d3e4867927e2e3a9fa2e998Older people used to tell me how time goes faster for every year

I think it is more that we let time go on, doing nothing to change our course

where before we would have done more to reach the point, we were seeking

what causes this I don’t know, maybe youth is intense, more packed into a year

maybe we stop believing we can change, or get lazy, or preoccupied or led by fear

I wasn’t very old when I learned fear can stop the neediest heart and leave her all alone

staring at walls in a black dress

eventually a day comes we see we have spent a long time watching for ships

as years passed by and we got into a rut of our own invention

it stuns me we can stay still for so long, neglecting our wants, our needs

as if they do not exist, pushing them down, hiding their force

just as we deny their existence, they surface and it’s like no time has passed

we are the same passionate creature we were before we forgot how

only older without much wisdom, just the feeling we didn’t do enough

for some of that may be vanity, our finite lives, the idea of a beginning and end

some of it may be true, who we thought we would be, or never considered

I envy those people who set a straight arrow and shoot and never seem to miss

not all of us are that precise or insightful or calculated

I drifted, partly because of distractions, partly out of inertia or sadness or a feeling of loss before I gained

acting like I had all the time in the world, that things would come still come my way

when everyone knows as you get older it gets harder

to generate that spark, that kindling, that damn irresistible flame

I’m also guilty of trying to assuage fear and you cannot live for such things

you must be bold or if not, pretend you are, for nothing, nothing was ever found by a coward

I have been afraid a long time, I have not trusted myself or my ability to survive without safety nets and hesitation

there was this picture in my mind of me

old and alone in poverty and I ran from that as if it were the cross

so much so I didn’t consider if my choices were really mine

or I was just responding to anxiety about something that may never come to pass

and you

the attention I gave you

all these years

were not spent wisely

for when it ended, I got nothing in return

nothing at all to show

it was in that way, a real error on my part

nobody likes to pour themselves inside out for someone

only to find it all goes up in smoke

I can’t say you were my undoing because

we have choices, but I definitely wasted myself on you

who could cut me out of your world like I was a paper doll

all the emotion I had, that was wasted too

there is nothing worse than feeling you gave everything and still it wasn’t enough

so forgive me if I feel bitter about that.

When we stand still, we calcify but don’t always turn hard

I still remember the feeling of dancing and wanting and longing

I remember thinking maybe life doesn’t have to be so beige

and un-passionate, that it can be wisteria

maybe life can be the way I feel now at this exact moment

imagining what it would feel like kissing you until our lips grew sore

despite so many people in this world it is not easy

to stare across a room and find

your familiar, the one who moves your blood

but I thought I found it in you, from the very first

Probably I was mistaken, it seems like risks are only suited to certain players

but tell me, if I was wrong, then why do I hold such indelible feelings?

why do I not walk away when it seems, the logical thing to do

when I close my eyes I see your face

I long to hold your hand and feel the light pulse in your small wrist

except if things were meant to be

they’d fit and you’d feel the same way, not be unmoved by chemistry

perhaps it is the story of my life

to find it so hard to fall and when I do, land on my face

perhaps I am not meant to be in someone’s arms

held, worshiped and adored, as you once said

was that a brush-off or just the truth?

who knows anymore it almost doesn’t matter

because I have tasted disregard many times in my life

to the point of knowing all the flavors it comes in

and if you don’t share my feelings

if I don’t make you want to jump up and run to me

if you don’t stay awake at night, your heart thundering

then I am not going to try to woo you

and I don’t want to be the girl, who has to try twice as hard

not when it comes to emotions, they either exist or they don’t

it just seems an irony, I pluck up courage and make a fool of myself

I was once told I should go find someone who’d be crazy about me

if that were possible maybe I would

but you’d be surprised what exists

and what does not

in this funny world of

lonely hearts

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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.

Safe ascent

q64w643

This unspoiled place

holds a silence and a sound both

in the careen of wild bird, dove-tailing against light

swish tailed-fox, caught in glimpsing treeline, scar of russet

your wool pulled and caught like thoughts on wire

I felt you inside, like mercury, descending to places I’d locked

tight against battering fists and claim

how did you learn the maze and possess

parts of me I had yet to give permission?

though all of us are like the wool, caught and fluttering

against a world of happen-chance and calamity

it is only perhaps, in those untethered moments

love, unexplained by all things

captures in unguarded step

drowning tightly held belief

we are our own master

and in this yield

in your arms and the void calling overhead

a vast sky holds swell of rain

just long enough

for our safe ascent

When we are supposed to laugh

She runs her hands along the grain, movement a stain

hearing rust loosen and turn to red and green exquisitely

grief lies her head slower in time

perhaps given enough, doors opening to learn

why she holds her hand over her mouth so long

as her sisters, once younger and afraid, nesting behind her skirts

flew from their hinged cages, they had less fear than she

though in truth it is not fear that stays her hand

but a lament she was born with, hearing in her crib, the press of tragedy

Like some will carry lanterns, light darkest paths, for others to step towards

as her sisters learn to speak new language and grow like hungry ivy

she feels the pit of her stomach open and a seedling sprout from within

it hurts so much to grow internally, like a miscarriage refusing to leave

she holds on to every moment as thick rope will choke, if you let it

she must drive it out of her

but how to divorce the parts necessary for survival? Retain a whole?

from those who seek to devour

as light will find a way into a closed off room

distinction slowly lost, leaving shadows to dance on clean tile

the smell of another day, unsure, it is about all time before, come to now

see her lying still, as untouched water in glassy gloom

how she wished to follow their burning quilled footsteps

higher into turquoise forest where even now, laughter can be heard

below surface where nothing stirs, but slow tread of one who is neither alive nor perished

but fragment awaiting its missing part

she thought so often it was you, and then her empty hands

demonstrate

the futility of wishing

for we are free only when, we claim nothing but the words growing in our gut

urging us to cry when we are supposed to laugh

The road

At first the road seemed seemed impassable

Such a long distance with no sighted end

90 pounds was

A hollow eyed effigy, struggling not to drown

100 pounds was

A sickened mouth, forcing itself to swallow and chew

110 pounds was

A hunger to gain lost appetite, swill of food laying heavy with each urged step

120 pounds growing muscle

Punching the fuck out of weakness and despair

125 the goal, she fought, her joints bloody and plastered together

When she arrived, her body, her mind, her vibrating soul, she stood and cried

At the distance she’d travelled, cracked knuckles captured in dried clay

Stretching like bad memories, bleached by unrelenting sun

In spite of this, still, a flower is able to bloom

Random cruelty

Her mouth

Had a tremor

Just beneath the surface

It spoke

Of the repression of horror

If she let it out

That creature would

Climb to the highest point

And start screaming, needful not of words.

She wrapped her arms around her chest

Feeling the absence of one breast

Her mom used to say

You forgot to grow into a woman, flat chested sparrow chick

Her boyfriend liked her angularity

It’s not very Latino, her sister decried

Shaking her own ample swelling bossom

She favored simple necklines and no bra, catching soft balls with callused hand

Then why she wondered

Did my breast betray me?

I never demanded anything of her

My children did not

Tug with hungry mouths on her unduly

Nor a lover, bite unkindly deep

She felt the tight, smooth scar

Like a flat knife lain on her chest, like unwanted medal

It seemed to hotly whisper

The curling, metal irony of us all

Without sufficient power to stave

Fate’s random cruelty

(For all women)

Endure

Along with recovery

I had wished

For one neighbor’s heart to heal, as he tried to mend a leak

Another, to survive the scouge of sudden cancer

For the little bird to find her red box

Fill it with branches and lay her eggs

Nestled blue against the hope of frail humans

For rebirth and warmer days

When the winds were the only thing to die

And maybe the scold in a voice, twisting the knife

Yes, wish it away, along with traces of fear

You have survived the winter, you are still here

The same curled toes and cold fingers, clinging on

If you don’t die, you live, and that’s what you find

As false friends fall and new are born

As spring gathers her skirts and grass turns from brown to hopeful green

As your neighbor touches your hand and his eyes speak

Of the simple gratitude of caring

You didn’t receive it where you thought it would be

There are branches higher up than you can see

Maybe the little bird right now is looking for her nesting

And just like you, she seeks the comfort of knowing

If you make your home warm and secure

They can huff and puff

But you will

Endure