Becoming Ocean: When you and the world are drowning

One woman shares the story of her life with polycystic kidney disease and sees parallels with the plight of the planet.

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"I have been drowning all my life, sort of," writes climate change journalist Eiren Caffall [Photo courtesy of Jason Creps]

I believe that the community – in the fullest sense: a place and all its creatures – is the smallest unit of health and that to speak of the health of an isolated individual is a contradiction in terms.

– Wendell Berry, The Art of the Commonplace

The ocean and I have a conversation every day, even though I live very far from its shores. It is rising, and I am drowning from within.

I have been drowning all my life, sort of. I was born with polycystic kidney disease, PKD, – with DNA that makes my kidneys form fluid-filled cysts on their exteriors and interiors.

The cysts fill slowly, over a lifetime, by degrees, unseen in the deep black quiet of my body, until one day there is simply too much liquid, and the veins and arteries and glomeruli of those two organs are cut off from each other, from the world, from my circulatory system, from my other organs, and the kidneys themselves shut down, letting fluid and poison back up into my blood until I die.

Or until some great and wonderful intervention comes my way: a transplant, dialysis, robotic organs, pills, magic.

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Eiren, the year she was diagnosed with PKD [Photo courtesy of Eiren Caffall]

I was told that I had this when I was 22, in my last year of college, and fresh from a youth spent in the hospital rooms occupied by my father and his brother and sister, all of whom had PKD. Most people in my family were dead before 50. I sat by bedsides and dialysis chairs in waiting rooms as surgeries went on, in churches for funerals, and mortuaries for wakes. I scattered ashes.

But in the terrible endless now, we are all drowning, the whole world of us, awash in slowly rising seas, breathing air saturated by extra carbon, extra water, pummelled by rainstorms, or beset by water’s absence, the way it has left the land in melting ice, or the forest in dying trees, in bushfires, or the desert baked as never before. We are all left with the problem of where water is and is not, a whole earth with our eyes turned on the seas as their fate makes ours.

The body as the planet in miniature

What does one do when faced with the end of their world?

Is it so very different to face it when it is your own body rather than the place you love, your house, neighbourhood, forest, bioregion, planet? The body is just the planet in miniature, the smallest unit of community, and each of us carries that small unit around with us every day, potentially in danger from many things, sometimes many things all at once.

When I was diagnosed, my father was still alive, and it was his nephrologist who delivered the news. Your PKD is advanced for your age. You have five years of health. Then you’ll lose your kidneys. You’ll go through menopause. You’ll never have a baby. There’s no preventative treatment. You’ll be well, normal, until you are not, your blood pressure will spike, you’ll get fatigued, your kidneys will fail.

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Eiren’s father, Charles Caffall, with her when she was 10, the year he got sick with PKD [Photo courtesy of Eiren Caffall]

In his words, I saw the course of my father’s illness – two transplants, 10 years of dialysis. I saw the course of my aunt’s – 20 years of dialysis, brain aneurysm, death. I saw my uncle in his wheelchair after a stroke, then dying on the transplant table. I saw my parents’ marriage, the alcohol they used to dull the fear. I saw the way that everyone looked at me, the last child of the line, the one who could get away, the one who surely did not have the gene, and knew those looks would curdle and change when they heard the news that I was hearing.

I knew this was a generational story, and I had joined the line of it, stretching back as far as I could see into the lives on my ancestors, and stretching forward into the lives of my children. And in that moment, I became kin with water, with the story of its change, though when I was diagnosed I did not understand that yet.

Knowing the future in advance is supposed to be the most terrible burden the gods can give you, a curse – Cassandra, un-believed and mad, the weight of the future sitting on her like an iron cage, screaming at a world that cannot see what is coming.

For a long time after my father’s nephrologist diagnosed me, I felt like that, my shoulders low with the things I knew. I left the nice man I was dating, hunched back to school and finished my degree writing about dying women, illness and the body, class and poverty, and felt I knew what I was going to become: poor, alone, sick, disfigured, unknowable in my singularity, in my state as a person both well and dying.

I stopped doing anything that might make me ill, lived a hermit’s life without pleasure, without coffee, ibuprophen, cold medicine, alcohol, cigarettes, love, meat, joy, sex, commitment, future. I peeled down to the basics of need, what would take the least from my body, push the drowning off as long as I could. I prayed that someone would figure out how to stop it for me.

I am earnest, and talky, and in the fresh waves of grieving for what I thought my life would be, I told strangers I was dying. And they looked at me, a vibrant girl of 23, rosy-cheeked, with strangely large blue eyes and healthy whites, and they thought I was mistaken, or exaggerating, or overdramatic. And then I was alone with knowing that the body that looked the same, looked like any of my peers, was not at all, was changed, was changing, was marching invisibly towards the inevitable darkness.

What has come is slow and subtle: a shift of energy first, a small infection, a pain that came and went and then came and stayed .... Then there was a day when I turned a corner I did not know was there, and I was never out of pain again. And that is the way the world is

by Eiren Caffall

And I waited. And it did not come right away. I graduated. I moved to Chicago. It did not come after two years. I made music. I fell in love. My parents got divorced. It did not come after five years. Other friends got sick from other things. My father died. I worked. I made records. It did not come after 10 years. I got married. I had a baby. It did not come after 15 years. I divorced. I fell in love again. It has been 25 years and the darkness of my illness is not here yet.

What has come is slow and subtle: a shift of energy first, a small infection, a pain that came and went and then came and stayed. I am colder in the winters, my circulation struggling. I am less able to eat certain foods without my skin itching from components I cannot process. My kidneys grow, taking space in my abdomen, altering my blood pressure, my breathing, my sleep. Then there was a day when I turned a corner I did not know was there, and I was never out of pain again. And that is the way the world is. But to someone outside me, the small things do not register. And apart from these warning signs I know how to read, I seem well, myself, I look unchanged.

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The writer’s aunt, Lois Caffall, the year she became sick with PKD [Photo courtesy of Eiren Caffall]

I came late to the diagnosis of climate change. I joined a line of people who knew the monster already, had watched it remake the world for years. I slipped into the company of Cassandras all over the globe. Listening to them with my new understanding was no different than listening to my father and his siblings, seeing how they already knew the monster of kidney disease, seeing the distance it made between them and the rest of the world. With my diagnosis, I entered the family of those who know what will kill them. When I saw climate change at last, I came into the family of people who knew what could destroy the world.

When you have news like that you cannot help but wear the armband of grieving, which some people see, even though it is only spiritual. And, if you are like me, you cannot keep yourself from telling people how things are. For years, I told strangers we were dying, the climate was going to make every single thing over, that they just had to open their eyes to see.

In my experience, a life-threatening diagnosis is one that must be faced. Facing it looks like letting go of the world and the life you had up until the second you heard the news of collapse. That life ends. That world ends. And the world is reborn for you alone. It is reborn and it is destroyed. And you are there to see it, stranded, solitary and broken.

But in that brokenness, if you face it, is the power to change everything, because destroying the old world can break open a light that shines on a new one.

Your denial 

What is so deeply set in my cells has a mirror in the molecules of the air. Those shifts may be ignored, rejected as irrelevant, incorrect, remaining invisible in a haze of denial. It requires bravery, vulnerability, imagination and faith to see them. It requires openness to science, reality, experts, and a willingness to feel fear without shutting down. Those are not the easiest human qualities to muster. Denial is much easier.

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Eiren’s grandfather, Charles Caffall, who also had PKD [Photo courtesy of Eiren Caffall]

I cannot be in denial. My abdomen is full of enlarging kidneys, the cysts filling and multiplying faster every year. I lose my breath walking up the stairs. I cannot bear the heat, oedema swells my legs and hands, makes my ankles watery. I fight waves of vertigo, nausea and vomiting and headaches, fatigue. I have pain that has not left me, even for an hour, for nearly four years. I am once again at risk of financial ruin, even death, as a result of the US administration’s attempts to take away health coverage. And if you met me today you would see none of it. I look well enough. Your denial could stay intact.

And the world is in its warmest year ever. Except for last year, and the year before. I write from an America where the current administration denies, rejects, and attempts to defeat the public discourse on climate change at every turn. I write after Katrina, and Sandy, and Maria, and Dorian, and Matthew, and a thousand other signs that were supposed to be the signs that made us notice. I write from a world where we have passed 400 parts per million of carbon in the atmosphere, and the ice is melting, and Australia is burning, and the seas are higher, and the coral is bleaching. Everything that the current American regime is doing will make it horrendously worse. And if you want to today, you can pretend to see none of it. Your denial could stay intact.

I am not sure why I have been given the gift of slow drowning, why I get to feel it as the world feels it, to know it as intimately as I know my own body. But I have been allowed to know from inside what it is like to warm and flood .... The prophecy in my own genes is an awakening with the quiet arrival of the greatest shifts in our lifetimes

by Eiren Caffall

Lived experience is the best way to feel a thing. Tragedy gives you experience, but not everyone has the same tragedy; we require openness to each other’s tragedies to reach wisdom. Empathy with those tragedies wakes you up, lets you cross into communication, clarity and eventually action. I could not keep from writing about the flooding of the world when I flooded myself. I could not keep from listening to the water, to the old, smart cycle of melt and thaw, rain and rise. I had to see the beauty and the lessons.

It is not the water’s fault that it is where I do not want it in the world or in my body. The water is only doing what it does. But as I listen to the music it makes in myself, to the work of it on other’s lives, I grow more awake, and I grow stronger. I know in the most intimate of ways what the people in power want the world to ignore. I do not take pleasure in the drowning, but I am less afraid of it, more connected and better able to change in the face of reality.

That I learned to see the world this way is something I would not wish on anyone, but here we are, we are all drowning together, and there is a deeper meaning to it: anyone can see the climate crisis clearly, not only the dying. Once you see it, you can act, and acting can live in a place of fierce desire to survive.

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Eiren and her father by the ocean, the year she was diagnosed [Photo courtesy of Eiren Caffall]

My daily conversations with the ocean have taught me what it knows. It knows how to find its level, how to ignore barriers, how to flow where it needs to, where it wants, regardless of the needs and desires of the powerful. Floods come for all types of homes. No matter how the current US president may wish to pretend it is not true, the rising seas will come for the homes he has built on the ocean. The rich may protect themselves, may run and hide, but the water is coming for them just the same. Water knows how to nourish and how to destroy.

Water is simply power, and power can be taken by anyone. Power resides in the hands of the many when they take it. Now is the time to take power back, as the water is teaching us to do, and demand that together – all of us and the water – we take back the world and make it new.

I desired to do that for my own body. And my desire has changed everything. While I live every day in a body with a life-threatening illness, I have done what we all can do: I have found experts who understand what is happening to me and I have paid attention to them and used their understanding to guide my actions; I have found community that sees me and values me, even in vulnerability; I have practised knowing both that I am dying and alive and allowed myself to hold both truths; I have found joy every day in all I can see, and in the body that sustains me, even while it hurts; I have participated in conversations with other sufferers, and educated the next generation of scientists and doctors from the place of my own wisdom; I have watched trials of experimental drugs, waiting for the one that will work for me, the one that might end the disease, stop the generational story with my own generation, allow a life for my child that does not have this threat woven into every part of its fabric.

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Eiren and her son [Photo courtesy of Eiren Caffall]

And – as we warm and flood together – we can do the same.

The message in the water is that we are in peril, but the message in the water is, more importantly, that we have time, we have power, we have all the force of nature at our fingertips, and human energy and brilliance besides.

We have only to take the power from the water, we have only to insist on our survival, on the dignity of all the vulnerable lives depending on that decision to become ocean, not ocean as a thing of fear and annihilation, but as the giver of all life, sustainer of the planet, mother of us all, mystery at the centre of all life on earth.

It is not necessary to drown to become ocean.

The views expressed in this article are the author’s own and do not necessarily reflect Al Jazeera’s editorial stance.


Source: Al Jazeera