S.O.S.

28514640_10155366958932338_2887770778102742777_o324300484.jpgI wanted to

open my mouth as wide as it will go

no .. even

further

disarticulated and gaping

for maximum sound

a fog horn

and implore you

describing

the itch in my throat

the lump that turns to anchor

pulling me down to ocean floor

no oxygen, just humiliation

It says

Help me

I’ve never asked before

hot-faced and ashamed

I’m all grown up and lost

wandering toward your call

Help me

unpick my mistakes

return to the scattered fold

but every time I begin

something in your tone

heeds a warning

and I go back to

holding in

sore like spring cold

my throat is not meant for singing

it is a lump hardened by knowing

you will not hear.

(After becoming so sick I decided my only option would be to move back to a country with socialized healthcare. I basically said as much to my father, the first time I have ever asked him for help as an adult. I felt so guilty for asking. Some of my pride comes from being independent, not relying upon others. I find it hard to ask. But what was harder was his lack of response. I could blame many things, maybe he was in shock, maybe he didn’t know what to say. But parents are parents for life, if their child at any age needs help, and you know they may not be able to help themselves, I would think most would help them. Now I feel stupid, ashamed and embarrassed for asking. I hadn’t expected too much, just some type of support in moving back, if indeed a way could be found. But he stayed pretty negative, he doesn’t want to make an effort or get involved. I realized then I had long thought family meant we were all in it together, helping each other through this life, but it’s more ‘them’ and ‘me’. If I could, I would help myself. I’ve done it every other time. But being sick means you can’t always help yourself. There is no worse feeling than asking for help after feeling so bad for having to ask for help and then feeling absolutely ridiculous for having asked. I’m not feeling sorry for myself, it’s just challenging because it would be better if I could live in a country with socialized healthcare at this point, being swamped by bills I cannot afford. I suppose like many who do not have that option I will have to find another way. I don’t feel hard done by, I just feel like I don’t have that familial support that I half believed I could have, if I asked for it, that feels very lonely but also I feel stupid, for expecting, or asking anything of anyone, I wish I had the strength by myself but I just don’t).

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Second chance

Not if, WHEN I am well, I will not squander, but should not have needed, a second chance

It will be / It already is / a spiked and harpooned, learning curve

There is humiliation, in not being insightful enough

That it took, being brought to kneel, flayed by horrors, to be grateful enough and find strength

As only when / it’s almost too late / we plead and beg / for one more chance

It is the truer person, who needs no such prompt, but lives rightly, first time around

I am declaring reincarnation and broken-handed, putting myself back together, limb by limb, until even I, do not recognize, the survivor within

She has sore knees from beseeching and a box of unwound screams for keeping

Maybe together, we can shift the albatross, tie on our ice skates, and, leaving bearly visible lines, skate the circumference, to where we last left ourselves, before water absorbed and we sunk, full of the weight of years, undone

Long ago and just now, these worthiest goals lay fallow, ink blots of punctuate

For the urge to live fully, is always most powerful, when denied.

Then, it is up to you, said the rise of each, urgent day

To scatter yourself in those lined troughs, awaiting divine chemistry

To grow once more, whole, when the door is opened and light let in, again

I pray for all, who yearn to begin

One way you can see, throw a penny in a pond, watch ripples cast divination

Fortune can be such a fickle playmate, the one who steals your efforts from your plate or, coin shall surface, catching sunlight, glint, at days ahead, not so dim

And while you wait inside your bird cage, the journey of even those imprisoned, can rise, from the depths of status quo

The lost and lingering who have forgotten how, to float on water

It is in horror, we see truth

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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

 

 

Anguish

cc477

anguish

is a selfish emotion

and a raw cry

made from the belly of the beast and all those terrors unseen

something honest and hardly admitted

kept behind fan and sleight of hand

it is something you hide for fear of being told;

do you only think of yourself? Are you aware others have it worse?

why can’t you just GET A GRIP!

You know all this just as you know

you can’t take one more minute

one second longer

staring at now familiar nightmare

feeling it turning you inside out and back again

(as if jaws were attached to your innards, pulling like a lover would)

anguish is an exhaustion

hunchbacked and ready to tear its own eyes

where if you could you would

run away from yourself never to return

where if you could you would

S.T.O.P.

where if you could you would

scream and never quit

until either your heart refused to beat or

something changed permanently

O the salve of darkness, shrouding such horror

how you have begged for change, change, change

please make it BE ANYTHING BUT THIS

and much as you did, nothing ever would

ease up and chill out, letting the prisoners out in the sunny yard

NOT THIS TIME or so if felt when again and again

you returned to

anguish

who is not definitely no

friend

but the enemy you know better than you ever wished

dangling by garter

over an old dunking pond

the shape of witches still burned

screaming in treeline

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.