You wake up sweating under a lightning tree, somewhere on that remote island called Illness, and your pupils nearly pop at the vast lunar desert. It’s sweltering; the water bottle by your side is empty save for a tease of condensation. You stand up, take a few steps, your hiking boots have lost their tread and you sway all over the place. An Arctic wind rips through the heat, and your bones, and chills you off your feet. The solitary leaf on the lightning tree floats to the ground, like a lowered flag. Scrabbling in the dust, teeth chattering, you delve into your rucksack: there’s no fleece; no compass; no guidebook, no phrase book. And even gifted linguists struggle with the lingo on this island where words have become numbers, Could you rate your pain on a scale of one to ten, where ten is the worst imaginable? For off the shores of Extremity, words are drained of meaning; weighted with subjectivity they sink to the ocean floor like shipwrecked treasure.
The Thursday before Easter my dearest friend, J, had an MRI of his brain; his GP suspected a sudden spate of headaches and balance issues to be viral and requested the scan just to be on the safe side. Unfortunately a significant mass was revealed; even more unfortunately an irregularity was spotted on a screening chest x-ray. The hospital kept him in overnight for observation, discharging him the following morning as the bank holiday would slow down diagnostic processes. He tried to carry on as normal; when I visited him on the Monday, his headache was such that putting on a pair of socks was an overwhelming task, his speech was slurred, and he was unsteady on his feet. He agreed to go to A&E if only to get something stronger than paracetamol for his headache.
The London traffic wasn’t bad, it was a blue-sky day and during the eleven-mile journey J said the ache was subsiding. And when we parked, at 3pm, in the A&E car park, he was out of the car in a flash, in typical J style: until the headaches began, two weeks previously, he had been a dynamo. Slow down, slow down, I said, as he seemed to break in to a run. Yes, I’m tr … his words staggered and in slow motion I saw his legs begin to buckle. I got to him just in time; my arms went round him as he slumped against me. Are you alright? A woman asked, from nowhere. I’ve never been more grateful for another pair of arms. Together we got him sitting down on the road; he hadn’t lost consciousness, Ifeelfinereallyit’sjustmylegstheygaveway, he kept repeating, each word melting into the next. Someone alerted a couple of nearby paramedics. They fast-tracked him through triage; Great ruse, I said to J, as he was wheeled into Resus, and we smiled, clinging on to the bumper of this barely amusing joke as if it were the funniest thing we’d ever heard.
Nine hours later after further scans, numerous neuro tests and intravenous steroids, J was admitted to the Acute Admissions Unit. Once he was settled it was time for me to go. On leaving the ward I pulled out the parking ticket from the back pocket of my jeans and remembered that I had left my wallet at home. Coming down the white corridor was the registrar who had been treating J. I’ll take you to security, he said when I explained my predicament, they’ll sort it out. I protested; he was busy, directions would be just fine. No, it’s a rabbit warren; the normal route’s closed off at ten and it’s past midnight now. I followed him down and around the maze of corridors, and through a hundred doors, his shoes squeaking. When we got to security he suggested they wave my fee and give me a weekly parking permit form instead, You’ll be coming back, right? he said turning to me. Tomorrow, I nodded. They gave me the form with instructions to get it signed with a special ward code from the nurses’ station: the weekly permit would save about £70. I couldn’t thank the doctor enough. Ah, it’s nothing, he said.
The following day I waited until the nurses’ station was quiet before handing over the form to a staff nurse; Who’s the patient? She asked with a frown that tattooed her brow with a W. I gave her J’s name and she glanced up to a whiteboard where it seemed that all patients, their bed numbers and consultants were listed in smudgy black marker pen. And why have you been given it? She thrust the form back towards me, her tone deadpan. I explained the actions of the doctor the previous night. Well, she said, the W wriggling, he had no business giving you this form. Parking permits are only issued to visitors of the acutely unwell. Her enunciation of acutely stung, as if she had slapped my cheek. She was still pushing the form towards me; I felt J’s body slumping against me in the car park, recalling how – despite his weight – he had been as fragile as a bird in my arms. I thought of his bravery over the past few days in dealing with his pain, and shock. Confusion careered in and out of these sensations and thoughts: A flashback to a geometry lesson at school and triangles; an image of the Shard; the signage on the front of this Acute Admissions Unit … She’s saying he isn’t acutely unwell … I mean, how ill do you have to be? To be acutely ill? Masses in the brain and lung not enough? Heart rate of 45? Doesn’t acute mean acute, after all? Is it me being obtuse, or is it her? All this went through my mind at 100 mph. She let the paper flutter from her hand to the counter. I took a deep breath and quelled a burning urge to punch her. And you are … ? I said with a sickly smile lodged in my voice, reading the name on her badge, and writing it down on the back of the form.
In the end the permit was authorised and I gave feedback on the doctor who had gone beyond the call of duty mid frantic shift, and on the empathic skills of the staff nurse. The small print suggested she had been right: if a patient is on a Life Support machine, or similar, then the patient is acutely unwell and their visitor has their parking costs subsidised. Even the doctor had been mistaken in his assumption that J’s condition justified the permit. My error lay in being distracted by her manner, and not remembering the semantic stretch that occurs in medical vocabulary. It cannot be described as a semantic shift, as the original definition is there, albeit somewhere.
If healthcare professionals find it tricky to decipher or trust a patient’s use of language and prefer them to use numbers to describe their pain, then perhaps they might consider extending a similar code to allay confusion over the language they employ; say a 1-10 numeric suffix? Let’s take acute/acutely. If a patient’s hand has raised the knocker on death’s door, and/or the door is creaking open, then the patient’s condition could be described as acute 9 or acute 10:
SN: How may I help you? [Staff nurse looks up from station with a smile].
H: Sorry to trouble you. I have a parking permit form, apparently it needs to be signed and given a code?
- Ah yes. The patient’s name please?
H: J Smith
Staff Nurse scans whiteboard.
SN: I’m afraid these permits are only issued to visitors of acute 9 or acute 10 patients. Mr Smith is only Acute 6.5. Sorry about that. [SN smiles sympathetically as she hands back the form].
Okay, so a tad tongue-in-cheek; it would, though, have made things much clearer; I wouldn’t have been left questioning my mind, or experiencing an uncharacteristic rage that might well have landed me behind bars. Of course, in the grand scheme of J’s illness whether or not I got the parking costs reduced was/is of zero importance. And in a few months this particular incident will be the minutest speck on the path trodden. Back on the island, however, where the sick and their loved ones flounder, scouring the horizon for familiar landmarks and signposts to Life, and where the future is especially uncertain, proper communication and kindness matter, greatly.