The dance of renewal, the dance that made the world, was always danced here at the edge of things, on the brink, on the foggy coast.
Ursula K. Le Guin, “World-Making” in Dancing at the Edge of the World
When people asked how I was doing after chemo had finished, I’d reply: “A little better every day.” It was a carefully crafted response – one that avoided details while still expressing cautious optimism that I might be finally, gradually healing. Unfortunately, as the weeks progressed, it became increasingly inaccurate.
I was full of expectations about the end of treatment. I had been patient, and careful, and focused on self-care. Now I was restless, ready to return to normality. But it turned out that recovery required just as much patience as treatment had needed. Instead of feeling better every day, my anemia deteriorated and I started spending more and more time in bed. A month after chemo finished, I needed another blood transfusion – this time, twice the amount I had received during treatment. On at least one metric, I was in fact doing worse than I had been during chemo.
It was not the only way in which things had gotten harder. Throughout the chemo period, I had felt a certain peacefulness. All my strength had been directed toward getting well again. Now, things were suddenly undefined, uncertain. I became more and more tightly wound at the prospect of returning to the undirected chaos of adult life.
Chemo was physically and emotionally demanding. But it was also clearly defined. We knew my treatment schedule weeks in advance. My health was measured regularly, and I came to understand what each of the numbers on my blood tests meant. The hospital provided me with lengthy handouts dictating permissible foods, recommended nutrition, and guidance on staying healthy. I knew my job – stay well – and I had a team of professionals to back me up.
Out of treatment, little is defined. No one can tell me how soon I can return to work, or when my hair will come back, or when my kidneys will be healthy again. The only thing I know with any certainty is that I will be having CT scans done every two months. But no one can tell me what those will say. No one can tell me if I will be in the privileged 15% of patients whose cancer doesn’t come back.
I wonder if humans once lived more comfortably with uncertainty. Earlier this year, I read “Against the Grain: A Deep History of the Earliest States”, by James C. Scott. Professor Scott surveys the archeological remnants of the earliest human settlements, and reveals that human society did not – as many assume – evolve in a linear way. Rather than progressing methodically from a nomadic lifestyle to settled agriculture and, ultimately, civilization, our ancestors instead crossed back and forth between these ways of life. At times, we even inhabited the space in between: settling in a single spot and building a township together, while still relying on hunting and gathering to nourish ourselves. We established these in-between places in locations which gave abundant access to adjacent ecosystems. Communities could there make the most of the edge effect, the greater diversity that exists at borders. We could fish in the water and gather from the banks and hunt on the land. The pulses of each ecosystem could alternate between plenty and scarcity, yet we thrived continuously by adapting with change and feasting on what flowed.
Professor Scott describes these edge communities as living with the tempo of the environment, and contrasts their lives with the monotonous rhythms of farming. Raising a uniform grain or cereal crop domesticated plant life, while also domesticating us to the timing of our fields. We came to accept and expect a self-imposed metronome that dictated the minutiae of our days and the shape of our years.
Our shift to farming must have fundamentally shifted how we thought about, and related to, the future. Hunter-gatherers knew a remarkable amount about the rhythms of their environment: the patterns of flooding and fruiting and migration and spawning. But, as our ancestors came to control the cycle of planting and harvesting, we would have increasingly expected to reap what we had sown. The farmer came to see her future in terms of the almanac: something to be shaped by her daily, weekly, seasonal actions. If the seeds were sown; the field tended; the crop watered – then the work of this season would produce the results of the next.
In this post-industrial age, I think we are still raised in the mindset of the farmer. In theory we understand that the future is unpredictable, but most of the time we live as if we can know and may even control what tomorrow will bring.
My cancer diagnosis made it impossible to maintain the illusion that my good behavior today will give me want I want tomorrow. My linear life, with its plans, and expected consequences, no longer exists.
Instead, I have to learn to make my home on the edge of a river bed – between illness and health, between living and dying. I do not know what the rhythms and flows will bring in the coming years, or even days. Instead, I must try to live with the tempo of my environment. I cannot know what each new day will bring – but today I have the strong hugs of my husband, a warm cup of tea, and a blue sky striated with white clouds. Some mornings I am too tired to even read; but in this moment I have the energy to write.
We strive to domesticate the unknowable future. Yet crops fail. Dams burst. We fall ill. We die. Change and flow comes and disrupts and remakes us. The only choice I have is my relationship to this tempo: can I nourish myself on whatever may come?
I would love to live
Like a river flows,
Carried by the surprise
Of its own unfolding.
“Fluent” by John O’Donohue in Conamara Blues: Poems
4 Replies to “Between illness and health (Between living and dying)”
You have an extraordinary ability for reflection and to stand outside what is happening to you, whilst still entirely within the experience. I think you are remarkable!
If we could live on love alone,then Nat you could expect several hundred years of life.😊
How wonderful that you are loved by so many especially your nearest and dearest.Thank you for sharing with us, for being in touch,for helping us to understand how things are for you.You give us information that I hope helps you also to manage what you are going through.
When you were a little girl there was always a book you were reading, excusing yourself from party chatter to take time out doing what you loved to do.Your reading skill and knowledge gained has made you wise and given you a way of interpreting this strange unpredictable life we all live in. Natalie you’re strong and brave.I admire your capabilities.I’ll send you a picture of our garden which is saying “summer is coming”.
Best love always
Hi Natalie. As always it is nice to hear from you. You are an inspiration to all of us. I hope the upcoming festive season is kind to you and family.
Just remember a lot of people care about you.
Stay strong Nat.
Your blog is beautifully written and I wish peace of mind and heart for you as you travel through life with hope and love.
My cousin and your friend Leslie encouraged me to read your blog. After recently going through cancer surgery myself, I found your writing so fresh and real. Thank you for sharing and shining a light on what all this can mean in a life I wish you the best!