The magic of not having leukaemia (tales from the Department of Ironic Suffering)

‘I’m going to say a whole lot of things to you today,’ my doctor said, ‘but you’re probably only going to hear one or two words of it. That’s quite normal.’

I prepared myself to hear every one of his words. I didn’t want to be normal.

‘So you’re tests have turned up something and they’re consistent with the precursor stage of leukaemia and lymphatic cancer…fnord finarkle…LEUKAEMIA…fnord fnord fnord finarkle…CANCER… finarkle fnord probably nothing but we need to be sure…derp derp derp fnord…BIOPSY…fnord…so you’ll need to go see a haematologist at the Peter Mac. Look, there’s about a 10-15% chance it will develop into leukaemia, which means that there’s an 85% chance it won’t. You’ve got a one-in-three chance of getting cancer anyway, so it could be worse.’

Leukaemia is one of those words one never wants to hear uttered in a doctor’s surgery, not even in jest. I felt suddenly heavy and depressed. The irony was that I was the healthiest I’d ever felt: I was reasonably fit, my diet was good and I had a pretty mature understanding of nutrition and how to take care of myself. The prognosis came out of the blue and a little seed of doubt entered. Had I just been fooling myself: was I actually that healthy? Underneath this veneer of wellness was I being betrayed, slowly undermined by a fifth column of mutated lymphocytes? Was this the aftermath of my wild youth or the lingering product of intergenerational trauma? These are the questions that went through my mind as I left the doctor’s surgery.

I wanted to reject the whole thing. The whole reductive Western medical model sits uneasily with me. It makes diagnoses in isolation. The idea that a bunch of white blood cells had gone rogue didn’t tell the whole picture. It didn’t account for how they got there, what caused them to spread or the impact of diet, emotions, exercise, family history and environment, for example, as catalysts of illness.

There’s nothing like a brush with your own mortality to make you appreciate the finer things in life! The initiate’s face-off with death is a stock-in-trade motif for most indigenous and even Western Hermetic initiation ceremonies. Wake the candidate up from their slumber into the mysteries and experience of the ineffable. I’d experienced several formal initiations in my life, as well as a few more informal enocunters with death. Each one had woken me up to a deeper level of being and some were akin to transformative spiritual experiences.

Last year while on a writing holiday in Bali I got dengue fever and I got it bad. Alone in a foreign country and responsible for myself, I became too sick to comprehend how sick I actually was and it turned into a disaster. I have a stubborn streak so strong you could build a house upon it and, in my sickness, I thought I was okay to manage myself. For several days I convulsed in a febrile mess; sending fevered and disordered messages back to my partner, staggering to the end of the alley and back from my guesthouse for water and periodic attempts to put solid food in my mouth. On the fourth day of the fever I fainted on hard concrete. The doctor urged me to go to hospital and reluctantly I agreed. Returning to my guesthouse however, I found my fever had plateaued and for the first time in four days I was able to put away fresh food. I decided to stick it out. I only had two more days to get through before the fever ended. My thrombocytes were hovering at just above 100, the critical threshold where haemorrhage becomes a danger, and it was a gauntlet I thought I could run.

The next day the fever returned in full force and I was ill to my eyeballs. I booked in for some acupuncture and in one of my greatest ever moments of stupidity, thought that I could walk to the appointment from my guesthouse. In the depths of fever, I walked for forty minutes in the Ubud heat to the clinic. Whatever I had left in me was gone by the time I arrived. The acupuncturist broke my fever and that night I went for dinner, a bowl of pumpkin soup. If I can’t eat this, I thought, I’d call it quits. I couldn’t even swallow a spoonful. I was done.

In hospital my thrombocytes plummeted into haemorrhage territory, down to 78. I was due to fly home in four days to attend the Mankind Project’s men’s initiation weekend. The doctors refused to tell me what was going on, how in danger I was of haemorrhaging or the likelihood of me making my flight home. Being sick in a foreign country is one kind of hell; being sick in hospital in a foreign country where nobody will tell you what’s going on is another kind. I had a permanent drip that I had to remind the nurses to empty or otherwise they wouldn’t come and change it, and the tubes would fill up with blood. My arms were bruised from regular needles and the hospital food was a still from Twin Peaks.

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Thankfully, four days after arriving in hospital my thrombocytes finally crept up above the golden 100. I was allowed to fly home that night, sore, battered, tired and somewhat broken.

But that wasn’t even the worst of the ordeal. What followed was. Coming back to Australia I couldn’t do anything. I missed the MKP weekend and for two months I practically lay on the couch, lethargic, depressed and uninterested in the world around me. If you could label it, it would be chronic fatigue. I’d always been one of those people who’d been a little bit cynical about chronic fatigue. I thought it was a case of mind over matter and that all you needed to do was will yourself to energy, to action. But every time I tried to push through the fatigue I ended up back on my arse again, wondering if it would ever end. If you could have given me the most ironic illness for my life, one that prevented me from busy would be number one. Before getting sick, I was the man who did everything. I always had a million things on the boil. My interests were diverse and competing: I wrote, I studied, I worked, I ran a counselling and shiatsu practise on the side, I did magick, I juggled relationships and family, I danced and a myriad of other things. Try as I might I often struggled to stitch them together and I felt pulled in different directions at once. Now I was stuck on the couch, barely able to cook dinner of an evening.

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View from my hospital bed in Bali

After about two months of trying and failing, I came to the realisation that I had to yield to the inevitable. There was little else I could do execept give up and accept that this was the new order in my life. Anything else was a recipe for enduring frustration. This came as something of an epiphany. Somewhere deep down, I realised that the only way I would get past the fatigue was to submit to it, to accept it and whatever came of it. In Bali, although it took me a few days of hell to get there, surrendering my stubborness to the reality of my situation opened the door to me receiving the treatment I required to survive. At home, surrendering to my inability to do anything began the process of recovery. For me, this was the equivalent of a initiatory or spiritual insight.

Clichéd as it is, what my life needed was a way to stop doing and a way to learn how to cultivate being. Yet it worked. As soon as I surrendered to the post-dengue fatigue it lifted. The way out was through submission. But in doing so my life had changed. My usual strategy of trying to push through to the other side, I realised, was stale and unsustainable. Soon after, I encountered a teacher who directed me how to cultivate presence and direct action through this presence. I learnt the art of allowing things to flow through me, to not try and force change upon the world but to be its agent in a state of flow. To say that this has been a revelatory experience is an understatement. The dengue was hell but it taught me the lesson I needed: to slow the fuck down and stop pushing. I am very grateful for that lesson.

The softest in the world

Surpasses the hardest in the world

What has no substance

Can penetrate what has no opening.

Thereby I know the value of non-action.

The value of teaching without words

And accomplishing without action

Is understood by few in the world.

– Tao Te Jing

The leukaemia prognosis followed on from the dengue, a consequence of the endless series of blood tests that I’ve had since. Dengue fever is not a very nice virus. It wreaks havoc on the body. And here I was staring at a potentially worse fate. I went home and held my love and we talked openly and honestly about it, we shared our deepest fears with each other, as well as our highest aspirations. I find it amazing that something so terrifying and debilitating could yield such depths of vulnerability and tenderness in our relationship. I thought of my family and how much I value them and I thought of my friends. I took a general inventory of my life; establishing what was important and what wasn’t. I realised how important it is to lead a life of value and purpose, that there is nothing worse I could think of than dying unfulfilled. I knew all of this anyway, but in the light of a terrifying illness it became magnified a hundredfold.

The ultimate story is that I don’t have leukaemia. I have a pre-cursor to a mild, non-aggressive form of leukaemia in the same way that a mole is a precuror to a melanoma. Doesn’t necessarily mean it will develop into anything and the odds are strong that it won’t. Nonetheless it’s still leukaemia, which is a scary thing. But leukaemia isn’t even the point of this essay. The value of appreciating our wellness and making the most of our brief years is. As is the depths of suffering it requires to bring us into the deep flow of life. Within every illness is a lesson. And I’m grateful for the lessons this luekaemia scare has taught me.

The irony seems to be that it takes the shadow of the reaper to coerce us into a state of appreciation for life. You hear stories of people with terminal cancer or people who have received a verdict of impending death and how they savour every available moment remaining, how life becomes beautiful, fragile and to treasured. They’re almost Buddha-like in their presence. Why do we leave the love of life to the dying? I find it somewhat sad that we are so complacent in our existences that we cannot truly appreciate the beautiful and fragile gift of life we have; that it requires the scent of death to instil in us this appreciation. Why do we need these initiatory encounters with death to remind us of the preciousness and ephemerality of our existences? Shouldn’t a love and appreciation of life just be part and parcel of being alive and at the centre of consciousness for every living being?

Everyday we are dying, we move one step closer to death, but we don’t celebrate the fact that we’re alive. Not celebrating our aliveness is an insult to the already dead and dying. Life is our birthright but we don’t appreciate it until we lose it. If dengue fever made me slow down, not having leukaemia tells me to smell the roses. So I will celebrate being alive. I will celebrate not having leukaemia, my good health, my sense of wellbeing and the deep flow of the Tao that moves through me. Life is brief. Time to enjoy it!

5 thoughts on “The magic of not having leukaemia (tales from the Department of Ironic Suffering)

  1. Thank you for sharing such a harrowing experience. It’s incredible that we have to go to such despair and sickness in order to see what needs to let go of and change in order to bring about new transformation and insight .
    You have been to hell and back and survived this to share with us your amazing story.
    Thank You 🙂

    Like

  2. Oh man! Your wisdom is divine. Reading this story took me on an emotional journey. Pain, disbelief, numbness, worry, fury, then spaciousness, fullness, openness, love and appreciation for life. I have to say I love you brother and I’m so happy to hear you rode that beast and still have hold of the reins. You are a gift to us all. Love ❤️

    Like

  3. Pingback: Notes on an initation | The Re-enchantment Project

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