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.
like a speeding hare, bolts past
like treacle. It makes me
dizzy, head spinning, waiting,
for this 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.
* “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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