Feature image: Hilary Wardhaugh 

Content notification: This post discusses extreme pain and suicidal thoughts. If you need support, call Lifeline: 13 11 44.

I can paint a perfect toenail. Seriously, I could start a second career giving pedicures. I can’t paint a fingernail, and often my handwriting is incomprehensible. But, goddamn it, I can paint a perfect toenail.

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I began practicing painting toenails when I was rebuilding my fine motor skills after losing most of the use of my hands. It helped, but I probably should have practised handwriting. Because now I can paint a toenail better than I can write. The mind is very specific like that.

At the time I needed to regain my fine motor skills, the idea of practicing handwriting filled me with fear and sorrow for all that I had lost and may never regain because of a severe neurological disorder.

And so I painted toenails, because when I painted toenails I didn’t have to face the fact I could no longer hold a pen, write on a. piece of paper… or any of the other things I previously did with little sense of effort.

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One winter, I caught the flu. I got on a train into the city in Melbourne, and when I stepped off it I was carrying influenza. Not that thing where people say they have the flu, but really it’s a cold. I caught a ‘bedridden, could not even open my eyes, can someone please carry me to the toilet’ flu. But, I was also a workaholic. Society had trained me to be a workaholic, rewarded me every time I took on more projects, when I kept showing up when I was sick – ‘a real team player’, ‘willing to go the extra mile’. Oh, how late capitalism loves a workaholic.

So, within two weeks, and still with a fever, I took myself back into the office. I wobbled through meetings and croaked and coughed my way through presentations. I can’t stand those people now, the ones that show up to work sick, thinking that they – or perhaps the work – is just too indispensable to not. But I was one of the worst. Sickness to me was my body letting me down, getting in the way of what I needed to do. My body was little more than a barrier to living, which needed to be overcome. I have since learnt that it is very dangerous to live as though your mind and body are separate entities.

Two weeks after my flu symptoms abated, I began to have a strange tingling sensation in my feet. Ignoring this new ailment, as I did the flu and quite a number of colds and other ‘inconveniences’ before, I went for a run. The next day, I could not use my feet anymore. Not to run on, not to walk on. They tingled and ached constantly and hideously.

Confused, but not alarmed, that afternoon I took myself to a podiatrist and the following day to a physiotherapist – covering the bases, because it all seemed so odd, this new tingling and pain.

‘There’s something wrong with my feet,’ I told them, ‘they hurt too much to walk on. Both of them, the same. It’s the strangest thing’.

Flummoxed they poked and prodded my feet to no avail. They could see nothing obviously wrong. ‘Maybe you’ve just done too much running?’, the podiatrist offered up in lieu of a diagnosis. ‘Your muscles are all jammed up’, said the physio. The podiatrist considered putting both my feet in ‘moon boots’ to immobilise them; thinking this might stop the spread of whatever was happening. Meanwhile, the physio tried to unlock my locked muscles with massage, to no avail, muttering ‘poor feet’ under her breath as she worked. We all concluded I had been doing too much running, because there wasn’t anything obviously wrong. There was no clear diagnosis, just an agreement that it was odd.

A week later, the same sensations spread up my legs. I didn’t return to the podiatrist, given this was clearly no longer a problem with my feet. Instead I returned to the physio, who moved to muttering ‘poor legs’ under her breath and she worked to try and release my locked immobile muscles.

Despite the physio’s efforts, I grumpily hobbled around the house on my desperately painful feet and legs. The muscles rigid, but simultaneously weak. I snapped at people and slammed doors, irritated by the pain and my lost independence. The fact that I could no longer ‘push through’.

I was grumpy as all hell, but not afraid.

No, the terror came when I noticed a tingling in my hands, then running up the lengths of my arms like the veins I could see in the underside of my wrists and forearms where the skin is pale and more translucent. Until I felt it in my hands and arms, I just had something wrong with my legs. When it started in my hands and arms, I knew I had a problem in my whole body. When I was being attacked from every periphery, I realised I was in deep shit.

My grumpiness and frustration was replaced with quiet dread. On its spread, the tingling pain and weakness, until my hands hurt so much I could not hold a spoon to my mouth. Could not find the strength to pick up a pen and press it to paper. If I drew on all my reserves, I could make it the fifteen metres from my bed to the car on my excruciating, uncoordinated feet, to be driven to the doctor. ‘This will pass’, I told myself over and over. ‘This has to pass’.

When I saw my doctor, she ordered every test she could think of, but the anxiety in her eyes suggested she also had no idea what was happening. ‘I’m going to order some tests that are going to sound scary’, she said, ‘I’m going to test for HIV’. But I already knew enough from growing up with a mother with autoimmune disease that it’s the things you can’t test for – the things they can’t name and therefore can’t treat – that are the ones you should really be afraid of. And sure enough, all her blood tests showed up nothing. Flummoxed, her prescription was bed rest and to come back in a week. I asked for painkillers but she refused; ‘you’ll become dependent, just push through’.

Once my mystery illness was done with my limbs, rendering them inert painful weights attached to my torso, it came for my autonomic nervous system. The part of our nervous system that is controlled subconsciously by our minds; it controls our heart, temperature regulation and breathing.

I began to feel chilled to my bones. Freezing cold every moment of the day. It was summer and the middle of a heat wave by then. I would sit outside in our tiny courtyard in the small patch of sun in thirty-eight degrees day after day. I couldn’t so much as break a sweat anymore, but the heat was a relief. By the end of that summer, I had the best tan of my life, and completely unusable limbs.

At night, and sometimes during the day, I threw back codeine, not because it took away the pain, but because it knocked me unconscious. Seven hours of oblivion, where I lay on my back – each arm resting propped on a pillow – motionless, because if I rolled on my side the pain would reach up through the codeine and leave me sobbing and unable to sleep, wondering if I could go on.

Out of desperation I wrote to a family friend who was a doctor, figuring that at least his personal interest might make him do some digging. He wrote back quickly, saying it sounded a lot like a nervous system disorder called Guillain Barre Syndrome. Later it was confirmed he had been right.

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Nerve pain is cruel. Almost nothing works on it, even the best drugs only provide a slight dimming. You simultaneously gain pain, but lose feeling.

Nerve pain is also not one thing. It takes many forms, as neurons fire chaotically throughout the body. Sometimes nerve pain is sharp, sometimes tingling, at other times it is buzzing, aching or burning. It can also be all these things at once.

Regardless the form, it never rests.  It is relentless. My pain was relentless.

But, because the destruction of my nervous system had caused my muscles to go rigid as the nerves fired off messages haphazardly while they dwindled, and my hands and feet to swell in reaction to the damage, we had all been staring at the symptoms and missing the cause.

After months with no relief, I declared somewhat dramatically but also truthfully that I could not live like this. I could not go on. And my mother and husband took me to the emergency room, grasping a letter from the family friend with his suspected diagnosis.

In the hospital they asked me to rate my pain out of ten. I stumbled over my answer:

‘Well’, I said ‘right now I guess I would call it a five out of ten… But, well, because I have been feeling this pain every moment of every day for more than a month now, and because the pain means I cannot sleep and I cannot move, I would say it is a ten out of ten’.

‘Ten out of ten?’ the doctor replied sceptically, ‘where ten is the worst pain you can imagine?’.

‘Yes’ I said with more certainty, ‘feeling this in all my limbs every second of every day is the worst thing I can imagine’.

But being nerve pain, the most untreatable of pains, they offered me no relief. No codeine, no morphine, to render me oblivious if not pain free. They gave me no comfort, however small.

After examining me and putting me through MRIs, they told me there were no lesions in my brain. It was not MS like one of the doctors who saw me on arrival had originally thought. It was, instead, this strange disorder which I had never heard of until my family friend emailed me saying me with his thoughts. They said I was lucky it hadn’t spread to my lungs as most patients end up on a ventilator; I was an atypical presentation and that is why the GP and others had failed to recognise what was happening. And with my ‘luck’, and working lungs, they then discharged me.

I left hospital that day thrown over the shoulder of my husband in a fireman’s hold; unable to walk on my now useless feet. I left hospital with no drugs and no advice on what to do next but to return to my GP. The GP who had not known a life-threatening illness when it sat in the chair in front of her, its owner begging for help.

As Sarah Manguso wrote, in her memoir about surviving Guillain Barre Syndrome, “as I see it, that’s the main problem with neurological symptoms that can’t be measured in numbers yet, and why so many of my symptoms weren’t treated… My reports on them were the only observable evidence”. And the word of a patient is never enough. Over 100 000 Australians are hospitalised with chronic pain each year; you’d think we would be getting better at empathy, if not treatment. But more often than not, chronic pain suffers are given little relief, and even less sympathy.

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Months went by like this:

I would get out of bed and spend an hour dressing – slowly pulling on each item of clothing with my searing hands. I could not wear tight clothing, anything tight on the skin – even a jumper with elastic at the wrists – would cause more pain. Loose dresses that could be easily slipped on were my go-to. I would then hobble to the kitchen, and try and feed myself. I found if someone put the bowl in front of me on the table I could take the pain of lifting the fork up and down just long enough to get food down. Then I would often throw back more codeine and wait to fall unconscious.

Eventually my family friend got me into the country’s best pain specialist, who admitted me to his rehabilitation clinic where I was finally diagnosed. Here, five times a week, I walked three steps at a time in a hot pool with stroke victims twice my age. Waved my arms three times. Then my legs. Then staggered out of the pool exhausted.

And more months went by like this.

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I searched for years for the right metaphor to explain the nerve pain I experienced when I was recovering from Guillain Barre Syndrome. I could explain what it made me want to do; I wanted to cut my hands off because I was convinced that might only be an eight out of ten on the pain score.

It made me swallow any drugs I could find that would knock me unconscious, give me some reprieve.

It made me think about taking my own life.

It made me stockpile all the drugs from every doctor, so I could take my own life.

But I for so long I was never able to find the right words, put them in the right order, or grasp the right metaphor that would help me to explain to those around me who had not experienced chronic nerve pain what it was like. To convey the specific terror, the particular horror, of it.

Christina Crosby finally gave me that metaphor, in her memoir ‘A Body Undone’. After a spinal injury brought about by a cycling accident, Crosby was left a paraplegic. Until I had Guillain Barre I never realised that when you lose a limb, either functionally or actually, you are left with pain. Crosby’s spinal cord injury left her with nerve pain throughout her entire body. She likens it to wearing a wetsuit charged with electricity; “a wetsuit, the kind you’d use windsurfing… my skin feels like that neoprene, thick and pliable, with an electric current carried through the underside… making a bold outline of my body. My feet and ankles… buzz all the way through. My fingers are cold, thick and buzzing”.

‘Yes’, I thought, when I read it – ‘that is what it is like’. Like the firm pressure of a wetsuit pushing on you, almost hugging you, but instead of warmth it brings sensations. It brings pain everywhere, to every nerve ending, making you acutely, impossibly, aware of every millimetre of your body while simultaneously dulling dexterity and other – more normal and more gentle – sensations.

Have you ever tried to be nimble in a thick wetsuit?

Close your eyes and imagine you are wearing neoprene gloves. The extra volume they add to each finger makes your hands feel thick and clumsy. Do you feel the way that sensations against the skin are dull or hardly there at all?

Now imagine trying to tie your shoelaces with those foreign things attached to the ends of your arms.

Go one step further, if you dare, and feel yourself trying to tie those same shoelaces with the wetsuit now damp, adding additional weight, and an electric current running through it. Electricity zapping every part of your skin.

Now, imagine going about every moment of every day – every task big or small –  with that sensation carried relentlessly across your body. All while I whisper in your ear over and over ‘this may never go away’.

Did you shudder? Is your heart racing? Do you feel scared? You should, nerve pain like this can happen to any of us and sometimes – often, in fact – it never goes away. It’s becoming endemic, as long covid sweeps the world causing both Guillain Barre Syndrome and all manner of other nerve disorders. If it happens to you, you learn to live in a single point of light. There is only the pain, your thick useless fingers and the shoelaces that need to be tied.

There is no past before the pain, there is no future you dare imagine – because maybe you will be stuck in that electrical wetsuit forever, or maybe you can no longer remember what the world felt like before you came to be wearing it.

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I read A Body Undone when the worst of my nerve pain had gone. After three years of intensive physical rehabilitation, mindfulness techniques and many drugs. When I had regained all I ever would regain of myself.

When I get sick or very tired I feel echoes of it in my hands still. When I am waking in the mornings, usually if I am stressed or upset by something going on in my life, I will shake in that hazy time between sleep and awake. You wouldn’t feel it if you were touching me. You wouldn’t see the sheets resting on my skin move. But inside, there is a tremor so strong it brings me out of my dreams and back into the world where I am, ever so lightly, haunted by the illness I once had.

It has stayed with me, that illness, just enough that I can never forget its terror.

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Just as it is hard to find the words to convey the experience of being locked inside a body in agony, the words to describe what it feels like when you finally break free are also difficult to piece together. As sociologist Arthur Frank wrote about tell the stories of illness, “the language of the story seeks to make the body familiar, the body eludes language… the body does not use speech, yet begets it”. When we want to tell stories of the body, we struggle to find the words that do not alienate ourselves from our ill bodies. We make the body strange to ourselves and others, in our attempts to make it familiar. Speaking, hearing, “traces of the body” in a story is not easy.

I am no more blessed in writing skill than any others who have tried to give voice to the embodied experience of illness or chronic pain. Instead, I can only describe two moments in my recovery that stand out against all the background of the suffering of those years.

The first is when I ran three meters again.

When I got that flu that changed my life, I had been running ten kilometres five times a week. Two years later, I ran three meters. It felt harder and more exhilarating than if I had run the entire fifty kilometres I used to run in a week at once.. While my walking and arm waving in the pool had given me back a tiny bit of strength, I was still stripped bare. My lack of muscle meant that I had almost nothing to help propel my body through space. To hold my bones and tendons in place as I walked. But one eventually I had just enough strength to run three meters on a sunny afternoon.

When you’re in deep shit, when you’re ‘life will never be the same again’ sick, you don’t realise it all at once. It comes in many, many, incremental moments of revelation. The day I ran three meters, I sat on my front doorstep afterwards breathless as previously unforeseen perils made themselves known. If it took me nearly two years to run three meters, how sick had I been before? How long was the road back to who I used to be? Was there a road back?

The day a doctor gave me a disabled parking sticker form, I sat in silent acceptance. Though it took me until that sticker hung around for more than six years before I began to accept that perhaps it meant I had a disability. That ‘disabled’ was now part of my identity. Though, as many people with invisible disability do, I still struggle to call myself disabled, tending towards the softer phrasing “I have lived experience of disability”. There is no shame in disability. I struggle with the label because it means that this illness isn’t something that happened to me once. It is something that is happening to me now, still, and will be happening to me every day for the rest of my life.

The second moment came during a phase of my recovery that required me to balance moving and not moving with absolute precision. My body shifted into a state where being too stationary was as painful as being too kinetic. I would wake up in the morning aching more painfully in my arms and legs than when the illness came on. This aching wasn’t a wetsuit of electricity, it was rods of steal being inserted into my bones as my eyes opened to greet the day.

One particularly painful morning, no amount of stretching would relieve the pain. Warm me up for the day, so I could breathe. I couldn’t access the special therapeutic hot pool, so instead I pulled out my bike. I got on and began pedalling down my street. It worked, the pain in my limbs began to recede. But that wasn’t what made me smile brighter than I had since the day my feet began to tingle. It was the air in my face. The feeling of breaking free of the prison of my body and my house. It was the freedom of being able to move myself a good distance completely under my own steam.

In that moment, I learned that movement is a privilege.

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It was only after I ran those three meters and rode my bike that I was able to admit to myself, and to those around me, how dire the situation had been. How dire it still was.

I needed to know I might be able to claw my way back to myself before I could say how far down I had fallen.

Until then I hid my disability parking sticker from friends when they got in my car. I told no one at work what had happened, catching lifts there and back while pretending to just be run down. I was finishing my PhD at the time and working a part-time research job, so it was easier to hide in some ways. And I pushed through, having not yet learnt the lessons of chronic illness and collapse.

To finish my PhD, I worked on butcher’s paper spread out across the living room floor, using big thick coloured texters that were fat enough for me to grasp. I would lie propped up on cushions writing. Typing was limited to when something was finished, and I’d brace myself for the finer work of hitting letters on the keyboard. Sometimes I would read from my butcher’s paper to a friend, and she would type for me as I lay on the floor in my pool of scribbled on paper.

I had no control over my body. I had no control over my illness. Over whether I would recover. I had control over just two things:

Whether I would live or die.

Whether I finished that goddamn PhD.

If I could just get that PhD done, I could focus on the former; devote myself fulltime to my body and its predicament. So on I went.

It probably makes little sense to you. I’m not sure it makes much sense to me now either. One thing they taught me in rehabilitation was that in states of chronic pain the brain interprets negative emotions, such as stress, as pain. A PhD is amongst one of the most stressful things you can do, certainly the final steps of it. In my wasted, exhausted state I reasoned that the only way to remove this stress was to keep going until it was done. I believed – no matter what anyone said to me – that if I took a break or quit, the stress would not go.

Looking back, I am not so sure this is true, and I’m even less sure I made the right decision. The prolonged and extreme stress that weighed on me in the last six months of my PhD brought several relapses with it. But these are the decisions I made, and they made sense to me at the time; in the choice between a qualification and my body, my actions and choices suggest the former defined me more than the latter. The former was what I believed I needed to live.

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After the PhD was done, I finally dedicated myself to my body.

It was in that year that I amassed a large collection of nail polish. Friends sent me little coloured bottles by post. Family passed on more when I saw them.

For more than a year no one, not boy nor girl, left my house without painted toenails.

While it began as something I did to help my hands recover, over time it became an act of care giving. There is something deeply personal about having your toes painted by someone else. Done with kindness, it is an act of love.

Since becoming ill, I have painted the toenails of friends who have depression, of cancer patients whose nails have turned yellow. Of the grieving, the sad, and the bored.

No matter what is happening for those I care about, I can paint them a perfect toenail.

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Sarah Manguso wrote that she knew Guillain Barre was behind her when her drinking became more of a problem than her pain. I’ve never found this to be the case; every ailment, every grief and sadness feels to me that it can be traced back to the moment my feet began to tingle. I blame it for miscarriages – for having to wait years longer than I should have to begin trying to have children, because I was too unwell to carry one. I blame it for losing my love of music, because loud sound now does to me what running ten kilometres used to but without the endorphins. I blame it for making me feel old before my time.

This is not to say, however, that there aren’t pleasures to be found living with the aftermath of nerve pain.

When I was in rehab I said to my exercise physiologist, as I very slowly did rotations on an arm bike, ‘I wish I was one of those people, like marathon runners, whose bodies have so much resilience’. ‘Gemma’, he replied with an intimacy gained from having spent hours a week with me for months, ‘you are one of those people. But you also have the kind of personality where you would push past your own breaking point no matter where it was set. That is why you’re here with me’.

He was right. The job, the running, the PhD, the ‘pushing through’ that flu and so many ailments that came before it. He was so right, in fact, that that statement probably saved me years of therapy.

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While some illness never ends, with time we can become accustomed to almost anything. That, of course, is the answer to my fear of how I would have coped if the pain had never left – as it didn’t for Crosby and so many others. Crosby talks about this as a careful act of remembering who you were, while also forgetting. Forget the body you once were, forget some of the person, forget the life – because you are not the same. But neither is anyone else. All our lives are undetermined.

Sometimes I wonder what my life would look like if I hadn’t got on that train back in 2012 as an overworked twenty-something and touched whatever filthy pole I picked up someone else’s influenza from. And then I remember what my exercise physiologist said. I would have always gone past my breaking point – it’s just who I am. If it wasn’t that flu, it would have been something else. And who is to say that I would have survived that something else? So I make peace with the here and now of what has happened.

I’ve learned to live with more silence in my life, because now I need it to regain my energy in a way I never did before.

And in that silence I have found creativity. When people learn about my various health issues they almost always ask how it is that I am so productive. The answer, of course, is that I am productive because of my illness. I must be still, I must be silent, far more than my natural disposition allows. The way that I have managed this is to turn that which was kinetic into words and ideas. Thankfully, words do not wear me out in the way that steps do and so I can push beyond the limits; allowing this part of me to roam as wildly and dangerously as it would like.

 

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