Means and Needs

needs: a hospital bag in my Millennium Falcon

It’s not for everyone. I know it’s a little bunker boy disaster planning but I got to the tipping point where that level of planning was going to deliver more calm than chaos. We were at hospital so often that the “bringing in” of the same same was a waste of time, where the request squandered the precious minutes whispered to my beloved. Every emergency admission resulted in the same spending of $20, $40, $60 for bits and bobs and in an entirely helpless situation, where everything that was so hard was compounded by not having clean undies.

He would say “what do you need?” because he was the guy who delivered what I needed but, a little like Han Solo, outside of the Millennium Falcon, he’s not the guy who could work out what I needed. “These are not the droids I’m looking for”, I would sigh at the t-shirt that didn’t fit me. And for me, because I am irritated with the world, a little like Leia in Empire, would always set an impossible list of things predestined to fail, because in hospital I am not appeased with the little things, like a toothbrush, because the big things, like walking, are out of reach.

It was a year we had called friends and family more times to cancel than we had to say hello, and we had pulled the pin on extra-curricular, playdates and indulgences like exercise had abandoned us. We were tethered to our home and a routine of illness-rest-repeat and with determined practice I tried not to envy other families. We were fighting the Empire on all fronts and it was happening to us, at us, around us, so I made the decision to pack a hospital bag. It was not the only crazy ass decision I made that year (Meal plan) but there was a “help me Obiwan, you’re our only hope” need and finding myself both Leia and Obiwan, I packed all the fucking light sabers a desperate mother could possibly need.

I packed the essentials I would normally ask my beloved for when my brain was clipping through the shopping list of cat scan, mri, bloods, heart rates, and oxygen saturation…. I packed the things my best friend brought in that I couldn’t ask my beloved for, and then I packed a few things that I thought might just save the rebel alliance. Away from the heart clenching nightmare that unfolded in hospital, I packed equal parts diligent Leia, hopeful Luke and swashbuskling Han and then I sprinkled a little force all over it.

And we drove it around in the back of our Millennium Falcon for more than 12 parsecs, a little over a year, until we didn’t.

needs: Hospital and navigating the Emergency Department (quest)

The fundamental truth of ED is that it is fueled by angels delivering care. Sadly, in an emergency, my demons, fear and anxiety, are running my show and ED feels like a minefield of judgement. The only way through the minefield is a vaccination against judgement, and while I know that vaccination is gratitude, the gratitude dimmer switch breaks when I am thrown around by fear, anger, fear, worry, fear and frustration. So, I hold fast to this one guiding light: She needs their help and I am here to get that help for her. And that is how the quest begins.

Once upon a time, in a land far, far away there was a small village family and when the village girl took ill, as she sometimes, often did, her mother would take her on a quest to the Royal court for a magic healing.

Like all quests, they must traverse the moat and the gatekeeper’s trial. Triage, starts with a series of questions that just don’t get to the point with haste. The Triage nurse has a system, and it works. It’s just my mind is throbbing; I need to get my girl to the help on the other side of the sliding doors. He persists with the slow questions, and the village girl has to answer. Chronic illness never presents at Triage like a garish car accident calling people into action. It is subtle, and it hides in the shadows. At that end of the questions, hey presto, they get through the golden gates and the village girl is given a place to lie down before the next stage of the quest.

She smiles warmly as she floats in with a clipboard and a sunny disposition. I already know she is not the doctor I want or the one I really don’t. Sometimes she comes at the beginning and sometimes she comes towards the end of our ED transition, but she always comes with her clipboard and her questions. Name of the child? (she’s just lying here!) Village? Medicare? Private health guild? Contact details? Is there a family court order in relation to the child? (again! she’s just lying here!)? And she is off to get the village girl’s file. I’m left thinking “you’re going to need a ye olde wooden cart”!

Snow White arrives with purpose. She has a cheery disposition and two blue birds perched on the edge of her clip board. She is our nurse, until we are freed, or until her shift ends. “I’m here to take some Obs” is her password. I give my girl our secret signal, we like her. She talks to the village girl, letting her know about Mr. arm cuff and his ol’ mate oxygen finger monitor as the bluebirds twitter about, getting things done. She is the perfect blend of kind and care and makes quick notes while asking Day questions, what did you eat? what happened? what’s your pain score? She looks at me like I might have something to offer and I take the opportunity to unload the prophecy that 1. we are frequent flyers, 2, we are normally seen by the King himself, and 3. here is the letter of last review which details current meds. She smiles and in the blink of an eye makes an assessment – not for the loony bin, I pass. She swears an oath to do something about pain and promises the doctor will be in shortly. Which one? I wonder. She floats out and our quest continues.

He cautiously pops his head around the curtain. He is reading the notes as he speaks to me, not her. His mouth trips over the names of her meds and that does him in, he is merely the Magician’s Apprentice despite the grandiose titles that don’t fit his bill. My eyes shift and I can see him in a backpack, playing dungeons and dragons with other baby doctors. He has nothing for the village girl, except the ability to escalate her care to the next doctor. I dispense with him with a wave of the wand and poof, he is gone.

The curtain is pulled back with a flourish. She has the confidence of one who surrendered the backpack, and brings the Magician’s Apprentice in tow. She recognises us, from a previous pilgrimage and impresses the Apprentice. Like me, she too refers to the King. I realise she is the Right-Hand. Appeased by this progress, the village girl and her mother submit to all the “in the beginning” questions until the village girl cannot endure more. The Right-Hand commences a physical examination and goes on as she plans to continue, moving this and that until the pain threshold Dragon rears and like that it is over. The Right-Hand yields, orders tests and trials, not nice but necessary ones, and whoosh she is gone.

Snow White returns briefly with her blue birds and because time has ebbed and flowed there are more Obs and a new step, a painful fortune teller is on the way so the potion is applied: numbing cream at all the points blood can be taken, slapped down with plastic patches. The village girl’s eyes well and the Dragon of pain swells, longing for her faraway village, her father and brother.
The fortune teller arrives and with every strike of the spindle that draws blood, the village girl sinks deeper. To make matters worse, the court jester finds a wildly mistimed time to make a bedside call. In the face of the court jesters’ jostles and jokes, the village mother firmly declines the attentions of the clown doctor because they are not for everyone and definitely not the village girl.
Hours pass, or is it days, and the curtain hangs limply between the village girl and the outside world. The pain is hovering but held back by the potions ordered by the Right-Hand and promises of scans linger in the air.
And then, as if no time has passed at all, he pulls the curtain back. His smile is kind and he holds the notes but does not need to read them. He is glowing with equal parts knowledge and power, he asks her “what happened?” and listens like she is the only loyal subject in the land. The king makes a royal decree: this is what is going to happen…. More blood, scans, monitors and all the tools at his disposal. The dragon is cowering in the corner as the village girl is admitted to the fairy kingdom. The old lady returns to confirm our financial information and the royal courtiers shortly thereafter wheel the village girl into a cottage in the Royal Court. Happily, ever after.