What was lost, is not

il_fullxfull.328869000what was lost, is not

you were meant to die

you were not meant to die

we were both so alive

even though, without modern means

your poor head, my aching conscience

may have felt the drop of earth

far earlier

the stars so alight, over our premature sleep

we did not think we could lose

and still

life shows us in picture cards

‘having a wonderful time, wish you were here!’

how tender the road without direction

how still the clock in hospital room

counting down, looking up

explanations for frailty

pistacho shells growing in number

blood coursing through our stride

the winding path and sudden start of deer

their black eyes, wells of ink

reproaching

if I had to do the same again I wouldn’t change anything

but maybe, plant better roots

for sickness can shake the most stalwart

where everything is thrown around and

stooping to bend fallen moments

can seem like it will never

rebuild what was lost

life can

be a small flame, hardly visible

it may appear to flicker

out

and still you endure

the absurdity of surviving

we laugh at photos of catheters

because it is the only way to clamber over

the horror still lying beneath everything

after all

who expects to reach out and find

the dissolve of certainty?

after all

who believes the boogie man under the bed

will actually show himself?

in the gowns of harried doctors

who poke and prod and pronounce

without

mercy

after all

our world is in short supply of tenderness

and when we implore God

or the toilet bowl

for strength and a little succor

how do we imagine the rescue?

after all

it may be a stranger who

reaches out

a loved one who

turns away

such is the carnival

and round lights grow hot

on your restlessness

after all

it is not easy to be

cast in uncertainty

adrift we only know

the tug of another’s flounder

we are strong in

searching each other

for direction

embracing imperfection

as if it were

the most beautiful moment

from horror comes

straight-backed on her tired horse

the unspooling of

hope

for as sure as you are still

racing by my side

what was lost

is not

 

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Cinder

I hope when we leave this lapsing category of malaise
It is to move toward; “All better now” and “well”

And never look back ….

At those rags that became us

Chained to a monstrous reality

Foisted like gravity

An unnatural disaster, scattering months

As what you took for granted can mock

Even the most stalwert

**

Before we were thrown together 

You were sane and I was whole

Not the vomiting wretch you met

In the dim hallway of limbo

We held onto each other

As broken pieces seek comfort

In the sharp edges of others

Not misery loving company, as pleated savagry

Misunderstood by that exterior world named;

“Those who are well, as we are no longer”

**

It was always night and always day

No difference

No discernment

To starve on the circumfrance 

You understood

The sudden loss of everything

We wrote, as violet penned lovers

On pieces of ourselves

Every tear, every unfurnished gap

Showing where parts of our whole had

Turned to ashen facsimile

**

In our former world

We may never have

Shared a long drawn breath

And here, in a room without clocks

We assemble words like kindling

Speaking of forbidden things

The rest of the world seeks succor from

Sickness you see, is a social pariah

People flee, even family

And the world could have burnt down outside this hospital

With you and I clad in backless gowns

The ribboned IV, a sharp needle with scratched song

Our wet faces seeing only the glue of disease

Dancing like embers at the edge of pinkening day

Rolling into months, as illness will smother whatever you were before

You lost the bet ….

**

Longing to leave this new role with the urgent lust of addicts

Nosing bags of sugar, to reclaim health

Though it were a fabled prize

And maybe it is 

For those shod on soft shoes

Feeling every stone beneath

Something of trauma, acts as language

Only you, only I, understand

We’ll never be the same now

Whether we survived or died

Shifting mystery within, to a new state without

Everything changes, even the taste of day and close of night

A voice

A warning

Unwelcome insight

And you tell me

We are closer for sharing a preview of death

Than friends who laughed together for decades

For fear can make strange bed fellows

**

It is true

My friend found in darkness

Reflection of what we never say outloud

It is my wish we gather everything we have left

Set fire to the pyre

Douse argument

Walk right through

Finding out there is a bridge

Even when you almost gave up

There are hands reaching 

For whatever is left after the fall

Hope

Pitches a tent in the parking lot and waits however long

And it is that 

Or maybe nothing more than will

A will to reclaim

That sets us trying again and again

With the forge of desire

Silver in a cloudless sky

Before their time

They say courage

Is learnable

Sometimes acquired in combat

 Trial by fire

But I have tasted white flames

Walked on coals

Swallowed whole

The seat of Hades

And still

Unable to grasp pole and walk electric tightrope

Never brave

A weathered rock unable to move

Even as sea receeds and escape, presents herself

It is not courage I possess

But by default

Staying power

Sometimes it is easier to be frozen 

Than act or flee

Simpler to tred water than

Drown or swim to distant shore

I am well versed in biding time

Treating days as if they were not precious

Undisciplined in

Owning my error

Avoidance becoming

Personality

They said I was a free spirit

I say

I was a gutless procrastinate

How long will life have waited

For me to act? Before

Sighing in disgust

She throws in her hat

Leaving me to consequence

For surely, what we believe in youth, will not burn

Catches up

Paying back ten fold

The only life is the one you make

To be a spectator in your own existence

Is not even a half measure

There is no reward for cowardice

No fulfillment in hiding

Life is a burning bush lighting darkness

It doesn’t burn nearly long enough

We

Are made of nothing without

Ernest endeavor 

Do not put yourself off

Climb the mountain

Conquer the voice telling you not to bother

For soon we are too feeble

Too near that twilight of the soul

It will be late then to lament

Take care never to postpone

Life

And if you must, do not be harsh 

For those who stumble can continue to try

One day it will all be so worth it

Every ache, every struggle

Mighty is not always the healthy mind

But those who refuse to lay down 

And die before their time

AGAIN


Sadness should never be more familiar than peace

Yet some days it is as if

Snow felted the house with only one emotion

And try as you might, the loneliness of your life envelopes

I have never found a remedy for that blue note

Striving to exorcise an unsettled icing of grief

Telling myself this too will pass

Somehow strikes false

For isolation

Looking out at the great cleave of land

Stretching as far as the eye can make out

One can say does not have to be sad

Yet if the majority of days you wake in silence

Wondering how you missed the full house

What happened to cast your dice alone?

Where from your earliest memory you shared space with emptiness

You may look at others with full lives and wonder how 

But it is a language you never learned

The discipline of togetherness or choice to be apart

Decisions made almost before birth

I carry the blood of reluctant loners

Speak the language of the professionally peripheral

None of us learned the art of heaving dinner tables or celebration

We learned to be alone from before we had known

I tried to break the Fates

Only ending further away

Now I live in a country without kin

A city without familiars

I can see myself, each year a little older 

More pinched than before, a flower dried and pressed

Flattened in her self capture

I want, I long, I desire so much 

To be known, to be among

Yet I end back here behind glass, an exhibit of one

Lost for fix, it seems, fate has her fun 

Childless, empied of possibility I feel like everything came undone

And I rolled like tumbleweed

And I gathered speed

Afraid of my life like 

Being made aware you were mad all along and everything you believed and clung on to

Was false

It is hard to be okay many times

That cold fear claims me, whispers, you are alone

The child within quakes to believe

She is still afraid of monsters

But the adult 

She no longer feels that is the worst outcome

For her, the idea of being alone

The last one

And no one notices those who are invisible

Yet still they live

As empty as a corn field

After they burn away the last dried husks 

A scorched Earth, flat and still

Enduring the ache 

Once, twice and again

Crescendo

Is it an astigmatism or

The blur of a questioning heart

When things are disordered, the very edge 

Clutching bitten sides as hollow city dwellers

Imagine faces looking downward into fast moving water, seeing drowned doves

A predilection for extremes

Where daughters cut their ropy hair

And open like heart chakras beneath festive lighting in department stores

Accents donating starry landscape above

Informing choices as snowbound relatives learning to talk over cold soup

Girls in A-line skirts, boys hiding erections behind glossy schoolbooks

And the heat of asfalt, curling like collars made of beaver

High gloves, no verbs, learning how to dye mouths like hair

Standing on unstable chairs, wobbling with frail grace

Where is moral nerve? Where negotiation? 

Responsibility for one’s life, defines self respect into a set of bronze rings hung from pinched hips

Whatsoever the plan, pinned to walls to hide the cracks

Tension strung like artificial silk, Protection sitting among lotus words

Flattering our need only leaves a sick emptiness

As when your mother left and the heavy latch 

Never fell back

Locking you in

Toys and books and closed looks

Guests who leave their fingers uncurled, will be claimed

As shadows whisk the corners of sobriety, in sating stain

When all is said and done, back to earth we come

Folding our weary necks against soft shove

If you take anything, take the memory of

That first summer before the shimmer rubbed off 

And everyone was golden beneath August, like hot dancers 

Turning their pliant necks to the orchestra’s

Swelling crescendo

A room with a view

ERSignWhen I was finally hospitalized, the nurse apologized profusely to me; “I’m sorry Ms. Daquin, but none of our rooms have a view.” I laughed as much as anyone who has been throwing up for 24 hours can laugh and when asked what was so funny, replied; “As long as it’s in the hospital you could put me in the broom closet and I’d be content.” The nurse must have thought it was a quaint European joke and she didn’t ask for me to clarify what I meant. Had she asked I would have told her; “When you are starving you’ll eat anything.” And this would have been the perfect explanation for my immense relief at being hospitalized AT LONG LAST. A few months previously I would never have imagined I could have wished to be put in hospital, let alone beg to be. This is the story of how that came to be.

Before I rampage against American healthcare systems, let me preface by saying having lived in other countries, it’s not a singular flaw but a worldwide flaw. There is one reason for this and it is this. PROFIT over COMPASSION.

It is true, we cannot go back to the ‘village days’ of doctors who work out of the goodness of their hearts and do not expect to become rich. That ship has sailed. Doctor’s today go through years of expensive training and expect adequate compensation, perhaps without this they would not be motivated to endure those years of rigor. This is one reason costs go up, quality of care down, and patients are often kicked to the curb in terms of continuous and good care, few people have it in them to become doctors and with a growing population, those who do, are tempted to compensate for arduous training by charging high fees. The other huge elephant in the room, the real problem, is the insurance industry, which has ruined the system so thoroughly there may never be a fix, irrespective of whether doctors over-charge.

Okay enough with the negatives … problem being are there any positives in healthcare today?

Certainly not where mental health is concerned. Anyone who has had a mental health crisis can attest to the stigma, lack of care, and inadequate diagnosis, not to mention penchant for over-medicating (or under-medicating) and error.

Unfortunately the same may often apply when you go through the healthcare system for physical illnesses, especially via the ER. I preface this by saying I am infinitely grateful that I had ‘some’ healthcare insurance at all, for surely having none unless you are on public assistance, can be even more terrifying (and I had 14 years of that).

My ordeal began a little over three months ago. A violently ill day out of the blue. You think to yourself; “It will be okay I’m just sick, maybe food poisoning. IT WILL PASS.”

Famous last words ….

The illness did not pass. Days of throwing up and all the rest, led to my first ever ER visit, then my second, then my third  and so it went on. One thing marked these experiences aside a dizzying variety of ‘opinions’ based upon no evidence and seemingly at whim. The thing marking those ER visits was the current healthcare’s notion that most diagnosis and treatments should be out-patient.

Until just recently I would not have even considered this. Is it right to make most healthcare on an out-patient basis? I may even have said; “Yes, because of diseases the more you can avoid hospital the better, it’s a modern approach of out-sourcing and enabling you to get diagnosed without having to spend days in a hospital bed.”

Made sense to me. Until, throwing up for weeks on end, nausea 24/7 and we’re talking “Super Nausea” the kind you couldn’t even describe accurately if you tried, I realized that I might actually end up dying at home.

It isn’t as hard as you think to get REALLY sick, REALLY fast. And in my humble estimate, when you get that sick if you are anything like me, you don’t want to be at home. You are scared, unsure of what is going on, violently unwell and you want to be in hospital. Yet every time I would go to ER, shaking, unsteady, sick and scared, I would be given basic treatment and told to follow-up with my specialist.

And sent home. Where not long after the medication wore off, I would get sick again and soon enough, end right back in ER.

During this time I thought of my grandparents, visiting them when they were in hospital, maybe for appendicitis, something like that, bringing grapes and flowers. It felt so comforting. I envied them the ABILITY to be in hospital. Apparently it was a modern-day luxury to be admitted these days.

There are times, continuity of care in the ER system needs see the bigger picture. If a patient repeatedly comes into the ER (at great expense I may add) it makes more sense to hospitalize that patient and DO THE TESTS THEN AND THERE than ask that they continue to follow-up with their specialist. Whilst having the specialist in the loop, the critical nature of such experiences requires for the patients sanity that their symptoms be addressed in a more direct manner as used to be the case before hospitalization fell out of vogue.

Seeing a specialist may sound wonderful, but what if they can’t see you for a month? Or you have to wait in a waiting room for 3 hours? And you’re throwing up? Or you can’t even make your appointment because you can’t ride in a car without vomiting every three seconds? There are times that out-patient services FAIL very sick patients and only exacerbate the STRESS for everyone involved. If a patient is very sick and cannot drive themselves or obtain a ride? If a patient has gone to the ER and misses that appointment?

I longed for someone to say; “You are VERY ill we’ll admit you and find out what is going on” but instead, I was released, released, released, paid a fortune in ER visits, got the basics done lots of times without any progression, and waited for days to see specialists who then tested me, and released me to await the results. Days, weeks passed, the sickness continued, my weight fell off me, doctors asked if I was anorexic, appointments were made, and I felt I was part of a nightmare.

Eventually EVENTUALLY when I was so sick it was impossible to turn me away, I was admitted. And in that admission I was tested and given a diagnosis and some kind of ANSWER for what ailed me. But this did not in any way appease the weeks (by this time, months) of extreme anxiety and feeling that I had absolutely nowhere to turn.

If you cannot turn to a hospital by way of an ER during your darkest moments of health then something is VERY wrong. It is absolutely terrifying to feel that you are incredibly sick and nobody is willing to say; “I will help you.” Instead, you are at the whim of the system which profits each specialist and mires progress to a crawl, causing an illness to become a trauma from which it is very hard to recover.

In essence I say this. Bring back hospitals. The kind we recall from childhood, where if you were really sick they would take you into a ward or room and doctors would come and examine you and answers would be given, and even if that didn’t happen over-night, you were not left being sent home desperately sick without answers, and without the succor of the medical world.

When you are very sick, sometimes the only thing you can cling onto is the reassurance that someone in the medical field will be able to help you, that you will not die alone on your bathroom floor, that you are safe. The anxiety of a serious illness cannot be underestimated, until you have experienced it, you may know logically that it is unsettling but not really comprehend the terror you can feel when something is very wrong and doesn’t stop. Be it pain, throwing-up or nausea, we are not trained to cope well with either the unknown or the unstoppable. It is the purpose of medicine as much to support as to ‘cure’ and this should include better options of hospitalization for those who do not fit the ‘recently amputated limb’ category of emergency.

I fully appreciate that with our burgeoning population, what was possible in 1950, or 1970 is not possible today. There are simply too many people. But if you look at the sheer waste of resources of repeat ‘visits’ to the ER, as well as unnecessary repeat tests, and the danger of some of those tests being repeated, it become apparent that it is ineffective to triage very sick patients without an option for hospitalization. In a sense a ‘one shop’ approach rather than our current plethora of experts, all in swish offices with highly expensive over-heads.

Most hospitals today in the US are quite grand by my European standards and yet, I would give anything for an antiquated ward if it meant receiving constant care in crisis, over pretty looking ER’s that offer little by way of comfort.

I admire anyone who works in the healthcare industry and this is no indictment of their tireless efforts, nor underappreciating the reality of modern-day-medicine, and the ‘frequent flyer’ type of ER patient who comes in regularly and to some extent, cries wolf. Maybe there is no fix, or way of discerning the patient who simply wants in, versus the patient who really needs to be, but something has to change.

Faced with mounting debt because of the number of cries for help which in effect a visit to the ER represents, I look back on the early part of this crisis with dismay, wondering what I could have done differently. Maybe if I panicked less? If I were braver? If I had been able to do more research? (Perhaps in between throwing up constantly and not having any energy). And yet, I must also hold the system accountable, because I feel both grateful and yet, that it failed me.

How did it fail me? One ER hospitalization relatively early on, based upon serious, ongoing symptomatology, and tests done during this hospitalization, may not only have gotten answers two months earlier, but avoided the trauma that I now unwillingly associate with this illness, exacerbated not only by the actual illness, but the experience of feeling completely helpless, without anyone to turn to.

A word to the wise, if I learned anything, I learned the value and importance of a VERY proactive PCP. I did not have one. Mine was kind, friendly and completely unprepared for helping her patient navigate quickly through the system. A proactive PCP can go a long way to cutting through some of the things you will not be familiar with, they can have you hospitalized if they know how to circumvent some of the bureaucratic red-tape insurance companies put up.

Additionally, have an advocate, someone who can speak for you, because when you are severely sick it is less likely you will convey all that you wish to convey effectively. An advocate may be the difference between ensuring doctors understand the severity of your illness and not. It takes some of the stress off you during a very stressful time and can avoid being at the whim of unresponsive doctors who are coming off a long shift.

I’m hopefully on the path to healing. At least that is what I have chosen to believe and much of getting well is attitude and focus. Just as I was traumatized by not having any support during the hardest time of my life, I am reminded that so much of ‘wellness’ is our will to be well. We cannot control very much in our lives, and nevermore is this true than when we are sick, but we can try our hardest to overcome burdens when they strike, and stay positive, because without that the journey is too hard.

The medical world should encourage this positive faith and hope, rather than strike it down with incompetency and bad protocols. Sometimes a sick person really does need, more than anything else, a room with a view.