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 well-being. 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 ADHD 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.
All we have is 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: Photo by Aron Visuals on Unsplash
Title from All We Have Is Now by The Flaming Lips
Originally published on 2nd July, 2016 at elinorpredota.com and republished on 2nd April, 2020 on Medium.