How do you cope with a long-term, debilitating illness that has no name?
It was coming. Time was ticking down.
I traced the edge of the table with my finger. Increasing tension and a haggard nail drove a series of small pale gouges into the ruby-brown patina.
He sat on the other side of the table. A third glass of red under his now unbuckled belt. He had a tendency to over-articulate as he formulated his thoughts. A poor Antipodean Rumpole of the Bailey, complete with the affected cadence and, no doubt, imagined white wig and gown. Me the defendant in the dock.
His gaze drifted to the left, concentration furrowing his brow. The half-glass of cheap shiraz he’d just downed dropped his IQ by another half-standard deviation. My pedestrian version of the Doomsday clock had moved to one minute to midnight and was about to click over.
‘So what’s wrong with you?’ he asked.
‘I have a disorder that affects my autonomic nervous system, the body’s autopilot. It affects the…’
‘Yeah, but what’s it called?’
‘It’s a type of Dysautonomia, but it’s not as simple as that. I…’
‘Yeah, but what’s it called?’
As questions go, these are my nails on a chalkboard. Some days I find a crumb of patience tucked down between the cushions of my couch. Next to a piece of tolerance and a used tissue filled with the dregs of perky. Other days I envision an anvil dropping from the heavens, Looney Tunes style, solving my problem with a splat and a jaunty tune, while I zoom off into the distance leaving naught but a puff of dust in my wake.
Ten years down the track you’d think I’d have a nice little spiel worked out. My elevator pitch. Everyone wants to have their answer in 140 characters. But there is no quick answer.
And so I enter the little-known circle of hell Dante casually referred to as ‘trying to teach a chicken String Theory while having your eyebrows plucked by a meth-addled lemur’. Or, in my case, trying to explain a complex set of symptoms that I barely understand to a 50-year-old who’s already downed a bottle of red.
Become ill and you become public property.
Become ill and you become public property. A performing monkey who dances while the accordion plays a snappy tune. People demand intimate knowledge. Those people can be old friends or complete strangers. At least with strangers a surly ‘I have a degenerative neurological disorder’ generally leads to a hasty retraction and abashed apology.
But this probing houseguest was not so easily dissuaded. Part of me wanted to simply say, ‘Fuck off. I am tired of talking about this shit.’ Or spit back a venomous, ‘What’s wrong with you?’ Instead I spent a good hour unenthusiastically trying to explain a hodgepodge of symptoms whose cause and any semblance of name remain the province of the mist.
*
When I first became ill I was under the illusion that I would go to my doctor, have some tests and be given a nice neat diagnosis. She would lay it out before me with a sweep of the hand, á la Delvene Delaney, and I would be overcome with relief.
But that’s not reality. Not even close.
There are tests. Then more tests. And yet more tests after that. My broken and dysfunctional parts are neatly documented.
But years later there is still no clear diagnosis. An umbrella catch-all sits in my ever-increasing file, but it doesn’t cover many of the new symptoms that continue to develop. After my last trip to my neurologist of seven years I was left with the deflating ‘I’m sorry, but it really does look like you have Michelle’s disease.’
Me and Lou Gehrig. Good times.
With no diagnosis there is no clear treatment, no cures, no prognosis. My imagination works overtime on the issue. Worst-case scenarios run through my mind as I stare at the ceiling all night. During the day I put on my whatever face. Apathy with a side of realism. It is what it is. Anything becomes normal if you live with it long enough.
*
Here I am lying in bed again, felled by the nameless beast that has dogged me for so long. Body funk that could peel paint off the four walls that are closing in.
If I have to look up at that damn ceiling vent again I think I may just throw something. Though in truth I should say ‘attempt’ to throw something; my pathetic arms are being even more pathetic than usual.
I’ve lost count of the days I’ve been stuck here this time. Somewhere in between one and two weeks.
I wonder, Why? Like I do every time this happens. But it’s never any clearer. Vague diagnoses half-whispered and personalised nomenclature. I like to think of this as a medical tell. Don’t play poker, doctors – the pity, the worry, the fear are clear for all to behold. Dysautonomia, autonomic instability, autonomic dysfunction, oh, fuck it, let’s just go with Michelle’s disease.
I’ve lost count of the days I’ve been stuck here this time. Somewhere in between one and two weeks.
It changes from specialist to specialist. Confusing, confounding, complete and utter bodily cock-up. Pick your descriptor of choice. It all equates to no fucking idea. And it gives little in the way of clear mechanism on which to pin the latest flare-up. Yet I lie here again trying to make sense of the senseless.
Did I exercise too much? Not that flailing my limbs around with some tiny weights and a smelly piece of Theraband counts as exercise. Did I not drink enough that one day? Did I eat too much, or the wrong thing? Is it all of the above or some other factor beyond my comprehension?
I beat myself up with self-recrimination when it may be nothing I did or didn’t do. There’s no energy to burn and yet a restless energy that needs expression.
This ridiculous state of simultaneous being that seems to dog me – should I try and move to shake it off? Should I stay where I am, knowing that if I attempt to stand and do right now I will end up in a heap on the floor? Further delaying my recovery to an even lesser baseline? Do I go to ED? Do I call my specialist?
The choices you have when you have no choices at all.
*
I know I am declining. I have accepted that one fact, along with my lack of treatment choices. On the other I want to rail against the unjust nature of this failing body and the fact that I still have no clear answer as to why. Pieces of my puzzle are handed out and taken back with relentless and remorseless regularity.
Other pieces remain on the table but are constantly being shuffled, connected and disconnected. More shoving a square block into a round hole with all the delicacy of a sledgehammer, in the hope that eventually it will fit.
I know I am declining. I have accepted that one fact, along with my lack of treatment choices.
The more concrete pieces of the puzzle have no solutions except wait and document, try this medication or that. And the pieces that float like flotsam on the sea? Pieces without form or substance, no less debilitating for their incorporeal form. Bash and churn, break and bend.
But no name. Nothing to hang on to. Nothing to grapple and fight. Shapeless, formless foes on the edge of my bodily vision. A guess at the shadow. A guess at understanding. A ‘You’ll just have to live with it’ piece of the puzzle.
It’s a hard load to carry when you don’t even know what’s in the boxes strapped to your back.
The shadow sits ominously on my shoulder wherever I go. I get up and it is there. When I drink my morning coffee it’s weighing me down. When I shower. When I eat. When I breathe. It’s there.
I can’t shake it and I can’t explain it. How do you remove a process, a thing, that is interwoven with every square inch of viscera and bone? Genetics are a bitch or a boon. It’s all luck of the draw and unless science catches up or I can use one of Star Trek’s transporters to sift out the broken parts, I’m stuck in this Ford Pinto body ’til the day I die. Hurry up, Scotty, and beam me up!
So I manage. I manage my body and I manage my life. Symptom by symptom, I am the knife-wielding juggler on a unicycle, perpetually about to be pushed over by some smart-arse little kid. I am CEO and factory-line worker all merged into one.
My specialists see me for 30 minutes every six months. I hand over my left kidney for the privilege of an official documentation of my decline. The other 99 per cent of the time I poke through my vomit to find what pills have come back up. I work out what I can’t miss and equally what I can’t double up. Work out timeframes in pharmacological half-lives and realise that all those years of maths do actually have a practical day-to-day use.
I manage life around unending carrot bags. Around enemas, falls, exhaustion, and plummeting blood pressure. I take a pill to manage my poo, my puke and my pee. I work out what I need to do in a day and begin my calculations. How much energy to shower, to dress, to eat? Did I take my pills in time to be able to eat before this appointment or that?
If I want to go out tomorrow, what must I do today? Up this. Stop that. Plan like a Doomsday Prepper for a simple coffee at a local cafe tomorrow. The apocalypse is coming, people, and it consists of me face-planting off a public toilet seat to be found, naked arse bared to the world, by a group of strangers who just served me a double-shot espresso and slice of cake. All because I didn’t add that extra litre of fluids the day before and mistimed my morning meds.
I manage. Because words like diagnosis, prognosis and cure were removed from my lexicon many years ago.
*
I take solace in knowing I am not alone. The Shadow People are many. Undiagnosed. Partially diagnosed. Atypical. Idiopathic. All in your head.
We are everywhere. United by the added burden of living with a crippling illness that clings tightly to its air of mystery. United by frustration. By fear. By what ifs? By the exhaustion of fighting and searching for the elusive Holy Grail. These are my people.
Words like diagnosis, prognosis and cure were removed from my lexicon many years ago.
Names provide legitimacy. The medical system’s stamp of approval. They provide shorthand to all the others I encounter. If it’s on Pubmed, I’m set. A Cochran Review, come here, legitimate patient. We believe you. It’s there in the peer-reviewed literature. Look! Look! She speaks truth! And without? You’re hysterical. You’re wasting our time. Go see a psychologist.
Malingerer. Somatoform. Conversion.
Belief is powerful. A rare gem that many in my position will never have. I’m one of the lucky few. The one whose doctors believe something is wrong, who acknowledge that I am breaking from the inside out. I am acutely aware of my good fortune. The Shadow People rarely get the gift of belief. But there is a perverse survivor’s guilt where my good fortune of professional belief becomes achingly burdensome when I see the suffering of so many around me.
A lifetime spent consuming fantasy novels tells me that to know the name of a creature gives you power over it. But my Rumpelstiltskin remains unnamed. At least by the medical community. I can’t look up Michelle’s disease. It doesn’t have a Wiki page and there’s nothing on the Better Health Channel. The Mayo doesn’t have a clinic to concentrate on solving the underlying cause or better treatments.
I hang on the side of support groups for aspects of it but no one has all the parts. I have a bit of this and that. The disorder breaking my body is a mongrel. And mongrels are notoriously hardy and resilient.
I continue on a medical mystery. I continue on interesting. I continue.
I have a wraith hiding behind the door. I move through life a revenant. A skin-walker. The image of a regular woman until you strip the skin from my body and the corruption pours out. Then you see it, the thing, the shadow, she who cannot be named.
I take my mongrel and name it FUBAR (fucked up beyond any recognition).
I’ll inscribe FUBAR on my MedicAlert bracelet, between pacemaker and autonomic instability. With hot iron, I’ll brand it. I’ll weave its name through every strand of broken DNA. I’ll own it like it once owned me. I’ll spit the name at inebriated houseguests and intrusive strangers, and let them muse over what that means.
Then I’ll slump back and sip my glass of wine. Through a bendy straw. Back to floor tiles, legs up the wall. Waiting for my blood to make its sluggish way back up to my hypoperfused grey matter.
I’ll sip slowly and contentedly, knowing that for once my shadow is slain. At least in my mind. Because, in the end, if I am to survive this uncertain life with a shred of sanity, that is all that matters.
