Things greater than
Do you believe?
Do you believe?
It will end and you will
Out of your bed of pain and fear?
That it will be gone
Dissolved like thin snow or frost
A beautiful nightmare?
Vanquished are the ghosts
You will in time not
Recall the laminate corridors
Antiseptic sting and gag reflex
A night nurse plunging needle
The faces behind morphine dream
Your room mate gasping as if
Being ravished by herself
A chink of light through heavy curtain
A scarescrow angel, you kept the hounds at bay
And mark, in my heart, pressing jewels to forlorn crown
Each gummy bear, red, violet, purple
Like bruises and flowers lain slow
You visit me there, in the crook of my arm
Where anihalation takes her naked bow
You wipe my cheeks of salt, bestow your own token
Posies of disease, viruses for the clean
Small bird bones picked lean, glossy in bleach
They watch her take the boat too far from land and wink out
Like a smudge on the line between life and horizon
Ask her to turn herself around
Return to the ward, the pill bottle, the undergarment of her lurk
But she has already begun
Like fine powder
Moving on the swell of clouds
All around birds make noise
And drown out
The feeling that
She has nothing left to burn
But the thin blue line holding
Our faces out of water
what 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
the stars so alight, over our premature sleep
we did not think we could lose
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
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
be a small flame, hardly visible
it may appear to flicker
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
who expects to reach out and find
the dissolve of certainty?
who believes the boogie man under the bed
will actually show himself?
in the gowns of harried doctors
who poke and prod and pronounce
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?
it may be a stranger who
a loved one who
such is the carnival
and round lights grow hot
on your restlessness
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
as if it were
the most beautiful moment
from horror comes
straight-backed on her tired horse
the unspooling of
for as sure as you are still
racing by my side
what was lost
When 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.
I’m calling in my marker
You have the wrong stiff, I replied
I’ve been scared stiff too long
Turned into crystal
Split apart under armadillo sun
Melted and became a resin lingua, beneath surface, hearing murmur
Of half forgotten plea
Smoke me if you must
You’ve got the flame
Though displeased not to gain my soul, ponder this …
What you cannot snap in two
Will one day be called beautiful
And all that pain it took
Just to keep walking
When the sun burned you to clay and turned you finally to river mud
When the last ounce of yes I can
Si su puede
Became Holy Lord I cannot endure
When you felt yourself
Wilt like wax candle of the saints, in midday sun
From alive, to oil, to fire and back again to blood
When Demi-Devil’s mock human weakness
Whispering in your shellac ear
“Try your hand at Lady luck”
As sure as the pain
Will come and sear that moment, right from you
A ripper of joy
Wielding guts by the garter
That no ideal lasts as long as your breath
Captured in entreaty
Oh Great Ones
Who stand, past and present
And know what we, of salinated water, shall never know
Lift us up from our pain
The fear gnashing blind over tattoo soul
Lift us up high enough, to see beyond the mountain of defeat
And like children from their deep sleep, we feel renewal
Fingers of comfort, rounding in caress
You see, evil has no hold, over courage
And still it is okay to say
I am scared, I am weak
When in our transformation we will become
Extinguishing a little of the fear gripping the recess of survival
Refusing to drown
Say it once
Say it every time
I am still
And the wind blows cool
On my wet face
I feel you near
I know I am not alone
I open the window and whisper
You can still
It’s just a story we tell ourselves
We will be well
And even Gods forged of longing, cannot always save our plea for preservation
And please, some peace
For the weary, are not the old
They are the ones who know the sear of unwanted pain
An ache rising like wave again, merciless in return
The loss of dreams comes softly as snow
We dream ourselves complete
Waking unable to breathe
This sheltering land sometimes permits tornadoes
When all around shakes, we are battered and bruised
And because we still stand, others never witness, the deep sink of our soul
Or indeed, that dark place we go
When night only burdens with unseen fear
A temperature, a loss of balance, this unknowing doctors touch, with gloved hand
As we find ourselves, subject to midnight
We, who have never been this person
Arising, as if we could separate and escape, inevitable places
Was it really me? Who gasped for breath and cried out to spirits never tested?
As has always been for each life line
Thinking invulnerable, tugged back to truth
All of us wear a harness, all of us hold an allotment
It is the wicked mirth of terror when first we gaze into our future and see the end
No amount of protest will stave
But maybe, maybe with light and courage
With nothing more than salved persistence
We can hold back that day and spend one more