I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:
In the face of loss,
folk clutch at straws for something that will make everything okay,
make deals with their gods, plead with their departing lover and so
forth. Even after someone has died - especially if it's happened
suddenly - their loved ones may run through a whole heap of scenarios
where, if only one tiny detail had changed, if only they had
personally picked up the phone or paid a random visit, the death
could have been avoided. It's all too late, but the mind continues to
try and negotiate an alternative deal.
I said in my post about denial that our disablist culture helps to keep people with chronic
illness stuck along the process of coming to terms with loss, and
this is especially the case with denial and bargaining.
We are encouraged to
bargain for our health in the same way we're encouraged to keep an
unflinching faith in the unlikely prospect of fast and full recovery.
With chronic illness, it's difficult to engage even with conventional
medicine without psychologically bargaining; believing that if you do
the right thing, eat the right thing, take the right meds etc., then
you will minimise what you've lost.
But this is chronic
illness - by definition, conditions which can't be cured and don't
usually go away by themselves (and if they do, they take ages). These
illnesses tend to fluctuate and both relapse and remission can arrive
either at random or due to events we have no control over, such as
trauma, viruses or family stress.
Taking care of our
health should never be about minimising a loss - that's simply not up
to us - but rather maximising our chances of being as well,
comfortable and happy as possible. When we feel like it. If we overdo
it today, we're not breaking some cosmic deal; we don't deserve to
feel like crap for the next week because we don't deserve any of it.
And that's something
which is sometimes very hard to remember.
A significant part of
what we lose when we become chronically ill is about identity and one
of the worst psychological - and sometimes spiritual - effects of
chronic illness is that it gets harder to believe that you are a good
person.
Everyone wants to feel
like they're a good person and most people find at least some
sense of this in the things they do for others.
Even if they don't spend their day saving small animals or lifting
children out of poverty, many people's work is useful and helpful to
someone else – people who genuinely feel their work is pointless
have a problem. Then there are the roles we have within family,
within friendships and communities; people feel good about looking
after one another.
Whatever our level of
capacity, people with chronic illness can do somewhat less than we'd
like. Some of us can't do very much at all. The best intentions in
the world can't give an elderly neighbour a lift to the hospital,
babysit for an afternoon or simply show up and be with a friend whose
world is crashing round their ears. Lower incomes limit our ability
to throw money at other people's problems or give money to good
causes. A low income plus low energy even limits our ability to make
ethical or environmental choices as consumers; we can't necessarily
afford to turn down the thermostat, buy Fair Trade undies or
self-righteously abstain from seasonable sales when the things we need become briefly affordable.
Then there's the fact
that what our culture holds up as especially virtuous is even more
inaccessible than the quiet good of doing the best for the people and
causes that matter to us. Ordinary people are always happy to put
their hand in their pocket for a good cause, but to be seen to be
good, you can't just ask around your kith and kin; you have to spend time, money and energy climbing mountains dressed as Spongebob Squarepants to raise just as much as you might have done rattling a tin*.
Beyond our diminished
ability to do good and especially to be seen to do good, experience
within a disablist society then gives us a hundred other reasons we
can't be good people. Friends and family members quietly shuffle out
of our lives, some employers behave absolutely hatefully, people make
jibes or well-meaning but tactless comments and both professional and
social invitations dry up.
In fiction, folks with
chronic illness are at best innocent victims, abused, cheated on,
heading off to Switzerland, the sweet but inconvenient relative who
hampers a protagonist's journey. Otherwise we are serial killers or embittered tyrants,
trying to control the world from a position of weakness and
deformity; our illnesses are metaphorical and often fake.
And then we get onto
politics. Campaigns against welfare and social care cuts are partly
about money, but if you listen carefully, what you hear more than
anything else, are protests of innocence. In order for what's been
happening to us to be in any way fair and just, we'd have to be a
complete bunch of bastards. I can say that casually, but it's very
difficult not to internalise at least some of the crap we hear from
politicians and in the media and in the wording of the letters and
assessments.
So while there might be
something natural about being less able to do stuff, needing greater
support from others and thus struggling with feelings of inadequacy,
this is a feeling enforced over and over again by capitalist
disablist society.
Thus even after we've
largely come to terms with ill health, I think a lot of us are still
busy bargaining for our souls.
Of course, something
people with chronic illness are pretty good at is suffering. Our
culture frequently confuses suffering for real virtues like hard-work
and patience - so much so that should one of us ever express the fear
that they are not a good person, we may well be informed that, of
course we're good - we've been through so much!
Suffering is not
entirely unrelated to virtue. Some Catholics with chronic illness
talk of offering up their suffering - they endure the pain and misery
of illness so that they or dead loved ones won't have to spend so
long in purgatory. It's not unreasonable to judge people favourably
who have endured suffering without becoming embittered or angry with
the world. Nelson Mandela was not a hero because he was imprisoned
for 27 years, but the fact he wasn't overflowing with hatred towards
the folks who put him there is an aspect of his heroic story
(although perhaps an overplayed aspect among those who like to see
heroes of anti-racism as supernaturally patient and peace-loving).
The goodness of those
who suffer is about resistance; not giving into
temptation, not being an arsehole about it, maintaining compassion
for others and so on. But suffering itself doesn't make us good.
Avoidable suffering is a complete waste of time and energy.
In my twenties, I used
to think that a certain zealousness about ethical and environmental
consumerism was fairly normal to my generation – not universal, but
common. Then I noticed that even though we'd all grown up with a
knowledge of climate change, animal welfare and workers rights, this
preoccupation was unique to those friends with chronic illness. It
wasn't like the others didn't care or weren't conscientiously engaged
(although some weren't), but I didn't know any healthy people who did
the sums about whether it was better to buy British tomatoes
grown in heated greenhouses or Spanish tomatoes than needed no extra
heat in their cultivation but had to be flown here from Spain.
If you set about trying
to manifest your personal goodness as a consumer, you've lost before
you start. All organisms consume – everything takes stuff from the
environment and uses it in order to live. In the absence of
tremendous physical energy, strength and anti-social tendencies,
humans are forced to live around other humans and source food,
shelter and warmth within the imperfect systems our species have
created. Folks can do good when they are wealthy enough to experiment
with the greenest new technologies - solar panels, electric cars,
zero carbon homes etc. - or when they have the power to confront or
change these systems.
Everything else is
about minimising the tiny wee flicker of harm an individual has to
contribute to the great fiery ball of harm our species is currently
causing to one another and our habitat. And yet of course, as long as you're alive, you can always reduce your consumption a little bit further.
Take the thermostat. I
have poor circulation and I don't move round much; I get cold and
cold makes my pain worse. And I don't go out much at all, so in the
winter I need to be in a heated home. For years, I was wearing four
or five layers, plus hat and gloves - restricting my movement, using
up my precious energy - in order to keep the thermostat as low as
possible. But of course, it could have gone lower. I could have put
on my coat and stay under the duvet all the time. It could have got
colder and I wouldn't have come to great harm - I would have merely
been less comfortable. I was suffering, but I was still
managing to destroy the planet.
I became obsessed with
toiletries – the plastic bottles; the bubbles and chemicals I was
sending down the drain. At one point, for quite a while, I didn't use
any cosmetic products apart from hand soap and toothpaste. I didn't
smell – I bathed as regularly as I could and wore clean clothes,
but I never felt clean and my hair looked awful all the time (some
people don't need to wash their hair in order for it to look clean
but some people really do). But toothpaste tubes - they're not
recyclable, are they? I was still generating waste.
What I did spend money
on was craft materials because I always intended to use them to make
things for other people (and I did, a lot, but of course, I managed
to accumulate a lot I hadn't used and felt guilty about that too).
I've written before about my angst around stuff and the fear that the
mere fact of having things I didn't desperately need was itself a
symptom of excessive consumption. I'm not the only person I have seen
that in and all my fellow travelers are chronically ill.
Being mature for his
age and an extremely empathetic listener, younger Stephen prided
himself on the word of praise he most often heard as a teenager and
young man; he was a rock. He listened to the problems of friends,
family and an abusive girlfriend, then he sought out other troubled
people and listened to them too. He joined mental health chatrooms in
order to listen to strangers rant and rave, express their violent
thoughts towards themselves, sometimes others and occasionally
himself. He was there to help people by listening, which was
something he was very good at - he wasn't getting off on other
people's misery. But when long and distressing conversations damaged
his own health - when helping others caused him suffering - he felt
he might not be such a bad person after all.
Having grown up (as I
did) on a history syllabus awash with graphic images of genocide and
torture (and not finding anything suspect about that), Stephen
believed that there was virtue to be found in being witness to the
suffering of others. Thus he sought out stories and videos of
terrible things happening, as if he could absorb some of the pain. "I
was already suffering," he says, "so it struck me that I
could always take on a bit more."
These days, Stephen
doesn't like to be called a rock because he says the thing people
like about rocks is that they are unyielding and unfeeling; a rock
isn't someone who can be hurt or exhausted by someone clinging onto
it, standing on top of it or kicking it repeatedly.
I get this because of
the dynamics of my own abusive marriage. There's a stereotype about
victims of domestic violence that they have martyr personalities -
that they somehow want to be hurt, so they can feel somehow ennobled
by the suffering. This is nonsense, mostly because it portrays
victims as people who are far more conscious of and in control of
these situations than they usually are. However, I did think that
putting up with the abuse somehow made me a less terrible person. Of
course, the abuse made me feel like a terrible person, so that's kind
of circular. But being able to forgive and forget (as I thought I was
doing) and keep caring for someone who had hurt me made me feel like
I was doing something good.
I guess it's all about
guilt again. The things people do to try to avoid feeling guilty
don't do any good to anyone. Often they make things worse; doing
things for other people in order to ease your own pain can make it a
lot harder to concentrate on what other people want and need. Guilt
consumes energy which you could be spending on anything else - like looking after yourself. It is possible to care for other people
without caring about oneself, but it is very much harder to do other
people any good if we don't first take care of ourselves.
We're told as children
not to compare ourselves to others, but when we live in a culture
which tells us the opposite half a
dozen times a day, we need to consciously resist the temptation - not
just in terms of whether or not we are good people, but whether we
are loveable, important, have adequate electronics and so forth.
According
to the Bible, Jesus said,
"Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these."
What Jesus is saying
here is dress to impress. Select your pyjamas for both style and
comfort.
On a more serious if
surreal note, you are something of a lily, dear reader. Earlier on, I
said that many people find some sense of being a good person through
work because most work benefits others in some way. Well, right now -
although I'm writing this partly to organise my own thoughts - you are facilitating this effort, just by being there and
reading this, making it worthwhile. You don't have to lift a finger,
I might not know you at all, but I'm very grateful that you're there.
You are taking a positive part in the universe.
 |
| Ajax looking after Stephen (a black toy poodle sits on the legs of a handsome reclining white man with dark hair and glasses) |
If JC had met any,
he might have also asked us to consider the poodles. When Stephen and
I lived with my in-laws and their toy poodles, Cassie and Ajax, the
six of us were a pack, each with our own role. Cassie and Ajax's
principle role was to be looked after; to be fed, taken for walks,
played with and let outside to toilet.
For much of the
time, Stephen's or my role was also to be looked after and the dogs helped with
that; if one of us was stuck in bed, they'd come to visit and sometimes sit
with us a while. During such times, none of us were useful, except
that we gave and received love. The dogs did and still provide
company, structure and purpose to my in-laws' day. Mum and Dad W are
both disabled pensioners but nevertheless busy people - it's not like
they'd fade away without the dogs to keep them going. But the dogs
are important.
 |
| Cassie looking after Stephen (a black toy poodle sits on the legs of a handsome reclining white man with dark hair and glasses) |
The dogs also
provide something very special to their human companions. A pet
allows a person (with the capacity to look after it) the opportunity
to give another living creature a really good life; to increase the
sum of happiness in the world. Being someone to love is no bad thing.
And almost all of us are that to some people, even if they don't live
with and actively look after us.
There are some
elements of loss associated with impairment which will never go away.
Sometimes I get tearful when Bob Marley sings, "My feet is my only
carriage" because I mourn a time when I used to walk everywhere
and took that entirely for granted. I still fantasise about going for long walks without having consider wheelchair-suitable terrain. It's fine; I don't wake up each day resenting my
incapacity to walk very far, but if I've not stopped pining now, I
probably never will.
In the same way, the desire to do good and be useful are pretty basic
human inclinations. I genuinely believe that - people fail all the
time, prioritising other things or held back by some fear or other,
but I think most people want to do good and be useful.
So relative powerlessness is always going to hurt. The important
thing is to recognise that our supposed uselessness is very much
exaggerated by the disablist world we live in. Everyone is obliged to
do what they can and the contribution each individual makes is so
personal and nuanced that it can't - and should never - be compared
to that of others. If we are still involved in the lives of other
people in some way - even in a very passive way - if we love others
and let them know that - then we are doing what we can.
