All we ever have is now

A brief memoir of sociopolitics and illness

Gandhi said, “First they ignore you, then they laugh at you, then they fight you, then you win.” 

Gandhi didn’t say, “Then you start all over again.” 

He probably should have.


“Are you better?”

I get that question a lot — from friends, from acquaintances, sometimes from family members.

In fact, I was asked that question just last week. When it came, I was tired, hungry, aching, and low on cognitive function; also, stressed, full of anxiety, and falling over the lip of depression. For long moments, all I could do was look at my kind, concerned neighbour with my mouth slightly open. Then I scoffed, and told her that I don’t get better: I have bad days, and not so bad days, because I have chronic illnesses. 

I’m not usually so ungracious in my response. I know the question is kindly meant, a request after my state of wellbeing. But it’s also a challenge, an unconscious demand that I fit the narrative  of progress; all too often, it sounds like, “Aren’t you better yet?” and underneath that, “How dare you still be ill?”


I’m  awake, lying in bed, muscles full of lassitude, eyes drooping. The sky is light, or it is cloudy, bright with stars, or pitch black, or blue and sunny. 

I don’t know what time it is. I don’t know what day it is. I drift: on exhaustion, on pain, on a deep, persistent ache in my  chest and gut that has no physical cause. 

I close my eyes; I open them. A minute has gone by — or is it an hour, or a day, or a night? 

Time is irrelevant. There is only now.


One  of the most pernicious ideas in modern and contemporary thought, especially liberal and left-wing thought, is that positive change happens in a linear fashion, that society goes from bad to better to good to best. It doesn’t matter whether the idea is couched in a rhetoric of revolution, or one of incremental progress, the foundation of that rhetoric is the same: things get better over time.

But sometimes (often; always) they don’t. Sometimes, things get better, then they get worse, then they get better. Sometimes, things get worse, then they get better, then they get worse. Always, some things are getting  better, and some things are getting worse. There is no smooth trajectory of improvement.

I grew up in the English Midlands. When I was in my teens and early 20s, I used to love the idea that things were always getting better, that all is for the best, in the end. It really seemed that way, for a while. Yes, through the 1980s and early 1990s many things got worse: HIV and AIDS arrived, killing a generation of gay and bisexual men, and sex workers and intravenous drug users of all genders; the unions were smashed, public services were sold off to the highest bidder, social housing was sold off to private buyers, carpet-baggers were all over the formerly mutual building societies; and a pointless war was waged in Iraq without the public’s consent. But on the other hand, the Poll Tax was defeated; women, ethnic minorities, and LGBT people were demanding — and getting — more respect; the Cold War was over; HIV and AIDS treatments became more effective; and by 1997  “Things could only get better”*.

Except they didn’t.

After an initial flush of hope, New Labour turned out to be Tories in disguise. Amongst other things, they brought in Public Private Partnerships and Private Finance Initiatives, which continued to privatise the profits and socialise the costs of public services, while hiding everything from the public, we who were supposedly being served by these arrangements, under watertight commercial confidentiality agreements. 

Then came the second Iraq war, the illegal one, for which no-one has yet to be held legally accountable. If the first Iraq war made me doubt democracy, the second made me downright cynical. Things weren’t getting better, they were just going on the same way as  they had for hundreds of years — war for profit, profit for war, and the  people united and easily controlled through fear and hatred of The Enemy. 

On the back of 9/11, the second Iraq war, and the  ongoing, never-ending “War on Terror,” racism and xenophobia increased, and while things got better for some LGBT people (mainly cisgendered, white, homonormative, abled, comfortably off, gay men), misogyny started running rampant once again.

When the “It Gets Better” campaign** started, I made positive sounds on the outside, but inside, I alternated between grim laughter and rage.


Time trickles
like a speeding hare, bolts past
like treacle. It makes me
dizzy, head spinning, waiting,

still and
waiting,

waiting
for this moment,
any moment,
to come within reach.


I have very few childhood memories of being entirely happy, entirely  healthy. I began to experience symptoms of depression at 8 years old,  and of fibromyalgia at 12. I was finally diagnosed with depression when I  was 37, and with fibromyalgia when I was 41. I also strongly suspect that I am neurodivergent, with many signs throughout my life of having  inattentive ADD and being autistic.

For three decades, I struggled to understand, and to cope with, two chronic illnesses and neurodivergence. In my early adolescence, my parents took me to a homeopath, and dosed me with endless vitamin and mineral supplements. As a teen, I was tested for glandular fever, for hypothyroidism, for  goodness knows how many other ailments and maladies. According to all the tests, which my doctor undertook again and again, I was perfectly fit and healthy. 

Yet under the veneer of my appearance as an abled person was a disabled person, whose needs were never acknowledged -- not even discovered, let alone met.

My lowest point came in 1987. Or was it in 1990? Or was it 1996, or 2007, or 2014? 

My best days were in 1989. Or was it in 1992? Or was it 1994, or 2000, or 2009?

Having chronic illnesses means my life doesn’t fit the tidy narrative of challenge, action, crisis, integration, triumph, the ‘universal story’ of progress. There is no beginning, no end; no single challenge to overcome; no single crisis over which to triumph. There is only the  messy in between, in which narrative and time stop and start and jump, flashing forward and backward, but never landing in the same place twice

A friend once said to me, “The most radical thing you can have is a long memory.”

We were talking at the time about the political consciousness — or lack of it — of our  university students, a few years ago, when I was well enough for a while to work in the world. We both remembered the British Miners’  Strike, she all the more vividly as the child of a County Durham mining  family. And we had both learned, in our political upbringing, about the General Strike, the Jarrow Marches, going back and back in British labour history to the Tolpuddle Martyrs. 

I don’t often think of my life with chronic illnesses as in any way radical, but it is; it is. I  have a long memory: I remember having better health than I have now, of being able to do more; I remember having worse health than I have now, of being able to do less. 

Always, I have dwelt in the liminal land between wellness and illness, between society and loneliness, neither productive nor unproductive, sometimes nurturing, sometimes needing nurture, never able to be placed by either capitalism or patriarchy into one box or another.

There is no progress in my health, and there is no cure. All I have to do is look back into my past experience, to look at my life as a whole, to confirm that that is true. I do not know what is to come, but it would be foolish of me to imagine that the future holds anything different. There is no point in me planning for a life that relies on my wellness, when that wellness is a pipe dream. Looking back, I know that I must plan for life with me as I am, not as I could wish to be, not as the “It Gets Better” narrative would have me be.

There is no salvation coming. There will be no revolution to right all wrongs. There can be no end game, no final roll of the dice, no ultimate victory or defeat. 

Understand, this is not, this is never a counsel of despair.

Because there is still today, with its struggles and joys, its choices and responsibilities, its love and fear. We live now, even as we are  informed, bolstered, uplifted, and warned by the stories of the past. 

Time is irrelevant. The future is non-existent. The past is made of memory.

There is only now.


Footnotes:

*  “Things can only get better” is a pop song by D:Ream, used by New  Labour in the 1997 British general election, which heralded the beginning of the party’s 11 years in government.

** A crowd-sourced video campaign started by Dan Savage in 2010, aimed at giving LGBT young people a message of  hope in order to prevent suicide.


Image credit: 'To the classrooms' by Marten Bjork on Unsplash 

Title from 'All We Have Is Now' by The Flaming Lips


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The creation of a story

On Saturday, I spent the day in Dunblane, at the Scottish Storytelling Centre Storytelling Development Day. There was a packed and thought-provoking programme, with discussion of our relationship with the stories we tell, ways to approach work with funders, community projects, and schools as storytellers,  and the relationship between oral tradition and literacy.

I was put in mind several times during these conversations of a story I created and told last autumn, as part of a partnership between the Dig It! 2015 project of the Scottish Society of Antiquaries, The Surgeons' Hall Museums, and myself as an apprentice of the Scottish Storytelling Centre.

The story was created to highlight tattoos at the Surgeons' Hall Museums, mortuary art at Greyfriars Kirkyard, and also included a cursing bone from the National Museum of Scotland (shown below).

cursing bone - National Museum of Scotland
Cursing bone - National Museum of Scotland

I started with the tattoos: from a 19th century sailor, and an army deserter (which you can see here and here -- behind links in case you're squeamish!). I researched these tattoos' background, the place of tattoos within the British navy at that time, and came across a particularly striking (and gruesome) story about tattoos and the spread of syphilis.

This gave me the germ of the story, which I then developed to connect it with the cursing bone and the graveyard. Eventually, the story took my protagonist, Jack, from Scotland to Portsmouth, from South America to Japan, and back again.

It was a very interesting process: very different from telling a traditional tale. Not only was I creating a story from scratch, but also in partnership with the needs and requirements of partner organisations, who wished to highlight certain elements of their work. It was much more akin to my previous work in social research and community development.

I share a little bit about the process with Joshua Graham below:

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Thinking about death

There is a lot of sudden transition in my life right now: my partner is making fundamental changes in her life, I have had to abandon my PhD, and, in under a week's time, I will be conducting the funeral service for a member of my family, whose death was not unexpected, but came long before anyone might have wished it.

As part of facing these various upheavals, and the grief that is inevitably arising, I have been researching myths, legends, and traditional tales about how death came into the world.

Moon and banana

In a tale from Madagascar, the first humans are faced with a choice between dying and renewing like the moon -- shrinking and growing on a monthly cycle, until the end of time -- or dying and renewing like the banana tree, which has many, many offspring, but then shrivels and becomes bowed, and eventually dies.

They liked the idea that they would live forever, but they thought that it might become terribly lonely, and so they chose to die and renew like the banana tree, and have the pleasure of children and grandchildren*.

A choice between life and sex

Death and the Maiden 2 by CapCat
Death and the Maiden 2 by CapCat

In southern America, one indigenous tale I read once** tells of how originally all peoples were immortal, in both body and spirit. But because people enjoyed sex, and had many children, the land became overfull with humans. There was not enough space or food or water for all the peoples -- human and otherwise -- to live comfortably together.

The grandmothers and grandfathers held a council to decide what to do. Some were willing to give up sex and having children, in order to make life liveable for all. Most, however, wanted to keep sex, children and to have a comfortable life.

Clearly, this was untenable. The wisest of the council, realising that convincing everyone to give up sex and children was never going to happen, went deep into the forest, questing for an answer. After many days, they came to a great river, which they knew they must cross to find what they were seeking.

The river was wide, and deep, and wild, and some of the grandmothers and grandfathers were not strong enough swimmers to cross it. They were dashed against rocks, or drowned as they were overcome by the waters.

When those who survived finally reached the other side of the river, they were met by the Spirit of the land: of the forest, and the river, and all of the plants and animals with whom the humans shared space and life. They put their difficulty before the Spirit, and It told them, "You already have the answer you seek."

The wise grandmothers and grandfathers looked at one another in confusion. "Spirit," they asked, "what do you mean?"

"In the waters of the river," the Spirit replied, "some of your number have met with the solution you have sought. Its name is death. Through it, you may continue to enjoy your bodies, and bear children, yet not become too many in number for this land to hold."

And the Spirit touched each one of them upon the head and heart and belly, and gave them the gift of death.The Spirit carried them safely across the river, and they carried death back with them to their settlement.

As people began to die, one by one, a great sorrow came over the people. The wise grandmothers and grandfathers felt just as sad, but they were also relieved, for they knew that now, they could enjoy their bodies, and each other, and the company of their children, and their grandchildren, without fear for the future of life.

Death learns love

The final tale of death I want to share with you isn't a tale in words, but a short, wordless animation, about how death feels about its work in the world. I think it is rather beautiful. It is also very sad -- get your hankies ready:

The Life of Death from Marsha Onderstijn on Vimeo.

There are also versions of this tale from the islands of the Pacific and among many groups of Australian Aborigines.

** I cannot remember where I read this story, so it may not in fact be from southern America. I will also, inevitably, have changed the detail of it through my recollection and retelling.

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