Betrayal by the body (No stories to tell)

If you delve into ancient Buddhist writings, you won’t find a lot of exhortations to stop and smell the roses… Indeed, sometimes these writings seem to carry a very different message. The ancient Buddhist text known as The Four Foundations of Mindfulness – the closest thing there is to a Bible of Mindfulness – reminds us that our bodies are “full of various kinds of unclean things” and instructs us to meditate on such bodily ingredients as “feces, bile, phlegm, pus, blood, sweat, fat, tears, skin-oil, saliva, mucus, fluid in the joints, urine.”’

Robert Wright, Why Buddhism Is True

We don’t really have cultural stories to tell about the bladder. It is not the site of metaphors (we may be lily-livered, or strong-hearted, or even anal-retentive, but I know of no metaphors such as the ‘full-bladdered’ or ‘rarely-continent’). If you are lucky, an Australian might refer to you as ‘piss-weak’ in typically crude Aussie slang. But there are no romantic stories we tell ourselves about urine. Despite its sterility compared to other bodily fluids, it’s still considered unpleasant and even obscene. In an entertaining podcast with Tyler Cowen, Margaret Atwood reports that as recently as 1984, the New York Times specified that “[w]e could not call it piss. We could not call it pee. We could not call it urine…. So we ended up calling it bodily fluids, which was much worse in my opinion.”

The bladder is a functional organ, not the stuff of poetry.

This, to me, is generally a relief. There is no story to tell about why I got cancer of the bladder. It is a random place, most likely a random mutation. I have no family history to blame, and no doctor can identify a cause. I was not exposed to any of the known risk factors. I cannot blame myself, or my environment, or my family genetics.

But it is hard not to feel that some blame lies with my own body. It is a body I have diligently cared for: I ate well, never smoked, and my only regular vice was caffeine. I wore sunscreen, practiced yoga, and went on many sweaty runs. Yet my body seems to be repaying this care by doing its best to kill me. It has been hard not to feel betrayed and alienated by this inarticulate organism that carries me around each day while allowing cancer cells to proliferate.

Watching my seizures increase in frequency and severity had only deepened that sense of dislocation. It didn’t help that even the smallest ones manifested as an inability to speak, trapping my thoughts inside a body that refused to communicate them orally. When the doctors finally decided to hospitalize me for a 24-hour EEG, we expected to leave without answers – as had so often happened in the past. But this time, my body performed its most spectacular betrayal in the right place, producing a seizure so big that my hospital room filled instantly with an excess of emergency responders who attached oxygen tubes and rushed drugs through me intravenously while they called out “stay with me” in a way that seemed over-dramatic, a line from a TV drama. It was also unnecessary: I was staying with them. The seizure never reached the whole of my brain, so my mind was present throughout, a horrified witness of violent hallucinations of a body far beyond my control.

The day-long EEG became a week-long stay, and I was confined to bed at all times unless a nurse was present. The doctors added new anti-seizure drugs, and then added more. When I was finally discharged, my legs were so weak that I couldn’t walk the short distance to the door of my room.

We had gone in expecting no answers, but left with more information than we wanted. The scans I received in hospital showed that the immunotherapy treatment had failed to contain my tumors: in just one month, five new ones had grown, while several existing ones had doubled or even tripled in size.

The cancer cells in my brain have likely mutated to such an extent that they are barely recognizable as bladder cells anymore. Distant in shape and space from their origin, their only remaining function is their deadly proliferation. As my body mutely allows them to take over space that ought to be mine, I have responded by retreating from the reality of my embodiment. I could once lie in a yoga class and vividly imagine the oxygen I breathed permeating down through my chest, my belly, my legs, all the way into my toes. But recently it has felt safer to keep a distance, unbridgeable, between my imagination and the body that carries me unpredictably, dangerously. Safer to keep my emotions unembodied, no more than an intellectual sadness that works itself out through memorizing drug names and compiling to-do lists that cover the drugs I have to order, the weekly shopping list, and palliative care directions.

But it was always an illusion that I could somehow keep my body absent from my emotional and intellectual response to this experience. It was an illusion too that this would be healthier, easier somehow.

After my hospital stay and my scans, our doctors decided on a new treatment plan. We were hopeful it would quickly stabilize the tumors. I thought we had all the pieces for that new plan in place when I received a message that our insurer had denied coverage for the central, cutting-edge new drug. I knew that the hospital would appeal the decision, I knew that the doctors would find a way for me to get the drug, I knew we could find a way to afford anything that I needed to keep me alive. Yet my hope didn’t lie in what I knew. Before I finished reading the message my belly started to heave with urgent breath. Tears of fear and grief forced my mouth open. A band tightened around my chest and I knew it wasn’t a heart attack but knowledge – that place I thought was mine, was safe – didn’t have the power to diminish the pain.

Then Matt came into the room, and guided me onto the couch. He lay next to me, the left side of his body pressed against the right side of mine. He touched my heart with his hand and asked me to feel some of the stress transfer from my body to his. He brought me a square of dark chocolate and the taste evoked other times. I ate it and remembered how the sweetness would feel in my body. And while he lay next to me he told me what I already knew and I heard him.

The pain and Matt’s touch, the sound of his voice, the taste and the memory of the chocolate. They didn’t belong to one part of me. My mind and body were – are – fully involved in every aspect of my illness and my response to it.

In her fascinating book ‘How Emotions are Made’, Lisa Feldman Barrett describes the fallacious idea that it is our minds alone that somehow control our emotions:

Interoception is your brain’s representation of all sensations from your internal organs and tissues, the hormones in your blood, and your immune system. Think about what’s happening within your body right this second. Your insides are in motion. Your heart sends blood rushing through your veins and arteries. Your lungs fill and empty. Your stomach digests food. This interoceptive activity produces the spectrum of basic feeling from pleasant to unpleasant, from calm to jittery, and even completely neutral….

…the science behind interoception, grounded in the wiring of your brain, will help you see yourself in a new light. It also demonstrates that you’re not at the mercy of emotions that arise unbidden to control your behavior. You are an architect of these experiences. Your river of feelings might feel like it’s flowing over you, but actually you’re the river’s source.

My body has not betrayed me. In fact, in all its miraculous complexity, it is somehow keeping me moving and vital in this world. Under the burden of brain tumors and hospitalizations, of severe kidney inflammation and seizures that steal my words and my breath, it comes back with healing, adaptability, new ways to be strong. The unpredictability arises from a body adjusting its essential functions in ways I will never be smart enough to understand. My body is finding new ways to keep me well even as it becomes more crowded with tumors that are solid, unyielding, without function or purpose.

As I find myself newly weakened by strong drugs and my week in a hospital bed, my muscles work to balance me and keep me upright. My hands, confused by tumors and seizures, still write out my thoughts in legible lines.

There is, in fact, no place of retreat from my body, no safe space where I can memorize drug names and compile dispassionate to-do-lists. But this is not a story of betrayal. Mortal and unknowable, my body has been adjusting its own complex system every day to keep my lungs filled, my blood moving, and my brain somehow calling on the books that I’ve read, the poems I’ve heard, the ideas that have excited me over many years. My intellect, trying to build an impenetrable fortress, will never exist outside its miraculous home. My body and mind are not just connected, we are – and will only ever be – inescapably and incredibly whole.

15 Replies to “Betrayal by the body (No stories to tell)”

  1. Oh dear Natalie. How you write is mind blowing. Thoughts with you and Matt as always. Chris x

      1. Much love – for friends and magical Australian T-artisty (am I allowed dad jokes if I’m not actually a dad?)

  2. Thank you 🙏
    I look forward to your blog updates – I sit and savour every word – I’m truely honoured to read & hear your deepest thoughts & feelings
    Thank you for sharing – the magnitude of your experience but the sheer simplicity of your own humanity – is so so amazingly & and eloquent.
    The love that you & Matt share is breathtakingly beautiful.
    my words feel so flat and not adequate to express my admiration – love – and best wishes for you – beautiful Natalie
    Thank you xxx
    All my love
    (Miss Perci)

    1. Miss Perci 🙂 Your words aren’t received as flat at all. I’m so deeply touched by the way you respond to my writing and to my experience. Thank you for all the love – and also all your delicious Facebook posts. If I make it back to Australia soon, I might have to come by and raid your pantry!. Huge hugs to you and your gorgeous family x

  3. Let me know if you’d like any jam or relish
    I’ll have it ready – for when you’re next home – or I can pack you up a care package of Stanmore Jams & relish & post to NY . I still think I’m a Stanmorie – even though we are moved to Ashfield next week – moving into area for Ashfield boys –
    My beautiful babies are starting high school next year at Ashfield boys. Ashfield High is Kicking amazing goals – socially & academically – and addresses toxic masculinity in lesson plans & a general attitude from the get go.
    Angus Young & his brothers of AC/DC fame went to Ashfield- Bede ( my medium size boy – is rehearsing- thunder struck – for his interview for year 7 😂.

  4. Thank you Nat. Being so far away we feel extra helpless in knowing how you are and being able to do something, but your blog helps us to understand what you are going through both mentally, emotionally and physically.
    I savour my time to read it-with a cup of tea, as only we Farrells can do. Reading your thoughts I feel closer to you and your beautiful Mum and Dad. Take care beautiful lady, Love Aunty Anne xx

    1. Can’t wait to have a cup of tea with you in real life. Huge hugs – hopefully to soon be delivered in person!

  5. I was told about your blog by my daughter Annie who is a friend, from university days, of Soz and also of Chloe. We are both very grateful to have been introduced to it.
    I think that you are giving a great gift to the world in sharing your journey with such clarity and grace.
    Your writing deepens my understanding, enlarges my heart, and inspires faith and courage.
    I also appreciate how grounded your writing is, and the way you remain very much in the world.
    Deep thanks and all good wishes from Helen

    1. I’m deeply grateful to you for letting me know that my words are reaching so far. Huge hugs and gratitude to you and to Annie x

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