Illness is something that makes people search for answers. This is
especially true of something chronic like ME/CFS, which is both long-lasting
and largely unexplained. This condition can have a profound effect on how one
looks at life.
Since I started blogging I have begun reading other blogs, of sufferers
of CFS/ME and of other conditions. And one phrase crops up reasonably
frequently in people's accounts of their illness, "Everything happens for
a reason."
It is an attempt to find some meaning in a seemingly meaningless
experience. Being ill seems to have no point to it, it is just empty suffering,
and when your life is passing you by it is perfectly natural to wonder why this
horrible thing is happening to you. As human beings we need to see meaning in
our lives, and so we assume that even though the experience is purely awful, it
must have some significance somehow. And so, "everything happens for a
reason."
Those of us brought up in a religious environment are especially prone
to this belief. We are taught from a young age that God is in charge of the
universe, that he is all-powerful and controls everything, He is omniscient and
omnipotent. And He has a Plan. We as puny humans cannot expect to understand the
Plan, but there is one and we just have to accept this.
Thus, "Everything Happens For a Reason" (EHFAR). There are
variations on this expression, "What is destined for you will not pass you
by", is an equivalent, used by many. It is a way of coping
with setbacks and disasters and difficult times and tragedies, and I am sure
can be of some comfort to people who have lost control of their lives, in
whatever way that happens.
It is reassuring to believe that, even if things appear senseless, that
there is a controlling force behind everything that is bigger than us, that
knows better than us. I'm sure that it can be a relief to let go and just trust
in the Plan, let destiny have its way.
Of course it is not just the conventionally religious that believe this,
it is a common enough statement in the general culture. The controlling force
may not be God, but is often "The Universe" or "Fate" or
"Destiny." It doesn't matter what terminology is used, the basic belief
is the same. EHFAR.
For me, though, EHRAR is nonsense. It doesn't bear up to the most basic
examination or scrutiny. This mystical idea of The Plan simply makes no sense.
To accept it would be to believe that we live in the best of all possible
worlds, and that there is some kind of perfect happy ending that is going to
inevitably appear, as if by magic.
A brief look at the world and what happens in it gives the lie to EHFAR.
What can the 'reason' be for the multitude of small tragedies and disasters
that happen on a daily basis? What is the 'reason' for the recent typhoon in
the Philippines ,
that killed thousands and thousands of people, including small children?
What kind of Plan involves the Holocaust, the Rwandan genocide, the
Tsunami in Japan , Fascism,
Stalin's purges, the never-ending mess of the Middle East ?
The list of disasters and cataclysms throughout human history is literally
endless.
And then there are all of the minor, everyday catastrophes that happen
to people every day of the week.
People die in workplace accidents that should never happen, helicopters
crash out of the blue, killing soldiers on training missions that had escaped
unscathed from six months of combat. Children get degenerative diseases and
fall seriously ill, people catch rare infections and never recover, a three
year old in the west of Ireland
recently crawled into a lift shaft and fell to his death. What can be the
"reason" for that?
Again, what kind of Great Plan involves all of this suffering? And to
bring the question back closer to home, what kind of Great Plan involves
millions of people world wide developing ME? What is the 'reason' for sufferers
of this condition losing years and years of their lives to disability and
illness?
Of course, there is no 'reason'. Everything does not happen for a
reason. There is no great explanation, no overarching Plan, no destiny, no
fate, no outside force controlling what happens on Earth. To quote a great
modern philosopher, Homer (Simpson, that is), "It's just a bunch of stuff
that happens."
Stuff happens, that's it. There is no useful purpose served by my losing
most of my youth to ME. Those people with severe ME are not part of some great
Plan, locked up as they are in their houses, unable to get out, unable to live
even semi-normal lives. None of this has
any greater significance, besides the normal meaning that any human experience
has.
So what is the significance of the fact that EHFAR is bogus and empty?
Firstly, our lives - and our illnesses - are not part of some wider
narrative. We are not characters in a story, moving inexorably towards some
kind of redemption and healing.
We may achieve some improvement or cure, but this will be down to
perseverance, luck, probably money, and the hard work and innovation of the
medical community.
And that leads on to the second point, the kind of magical thinking that
EHFAR involves is not helpful in dealing with, and recovering from, a condition
as complex as ME.
Psychologically, it is important to be realistic and rational, precisely
because this condition is, on the face of things, completely counter-rational.
It is poorly understood, badly explained, and involves so many and so varied a
list of symptoms that it is easy to lose perspective and sometimes sanity in
the face of so much uncertainty.
Magical thinking does no-one any favours in the long run. For years, at
my worst, I indulged in many of these habits of thinking. At times I was
incredibly negative, believing that I was cursed, that I was destined always to
be sick, that there was a power greater than me dooming me to constant illness. This often left me paralysed and depressed.
At other times, when I was doing relatively well, I developed a false
sense of security, believing that it wouldn't be "fair" if I got
worse, in some way believing myself immune to further setbacks. Of course I
pushed myself too hard these times, and had relapses, some very severe.
The truth is that "fair" doesn't come into it. There is no
great Balance in the sky, we don't get what we deserve, no matter how much we
would like to believe the contrary. Life is hard, bad things happen to good
people for no good reason. We do not get our just deserts.
The truth is that there is no great Plan moving us inexorably towards
health. It is not "going to be alright in the end." It is down to us
to keep going, keep trying to get better, to keep trying new treatments and
encouraging the medical and scientific professions to move research forward.
There are no guardian angels, no seventh son of a seventh son will cure
us, there is no silver bullet, no magic cure. Connected to this, of course, is
that those "alternative" therapies that most of us spend hundreds or
thousands of euros, dollars and pounds on in the desperate hope that we will
somehow be one of the few lucky ones that benefit, are nothing more than
placebos. As has been said many times, if they worked on a consistent basis
they wouldn't be "alternative medicine," they would be just
"medicine".
This may all seem like a bleak and brutal view of the world. That may be
so, although I don't see it that way. For me it is about facing reality, and
doing everything, absolutely everything in your power to change what you don't
like.
It is about being realistic about your state of health, and not living
within some kind of delusion that everything will automatically be alright. It
is about not giving up, and somehow accepting your condition because
"Everything happens for a reason."
There is no Great Plan, no fate, no destiny. We need to keep our minds
clear, and not be distracted by woolly magical thinking that only leads us down
blind alleys.
Couldnt agree more. That kind of woo woo thinking, i know, is a little irritating.
ReplyDeletejust wondering how you are getting along with your rebreathing mask? Do you think you are still getting as much benefit from it?
daniel m
Thanks for your comment, Daniel.
DeleteAs regards the mask, I am still wearing it, and my improvement has held up, though I have plateaued. Still, I haven't slid back at all, so it is still positive.
Great post and I totally agree. It's really insulting I think to hear someone say that. That we are only given what we can handle. It is somewhat vindictive. Bad things happen to good people and karma often loses people's addresses. It certainly doesn't make it any easier to believe that we are just part of a plan. Thanks for posting this and glad to have come across your blog.
ReplyDeleteSian
Howtodealwithme.blogspot.com
Thanks for your comment, Sian. I must check out your blog too, it's always interesting to see new people blogging out there, the more the merrier!
DeletePlatitudes and they suck!
ReplyDeleteFor what it's worth, I'm a Christian, and also get irritated by the EHFAR stuff, partly because I think it sells Christian theology short by refusing to take into account the broken nature of the world, and the fact that God doesn't promise us our very own fairy story happily-ever-after-cum-morality-tale.
ReplyDeleteI know that some people keep positive by trusting that they will improve, but with a very long term illness that becomes harder to sustain. I think in many ways it would be psychologically much easier if we were told by medics and family that our illness is more like MS, ie not likely to improve and likely to disable us for the rest of our lives. It's precisely the 'never mind, you'll get better soon, once you've learnt your life lesson from it!' Thinking that is so torturous.
I'm writing a book, half-memoir, half-instructional, about how it feels to have ME, and this was my primary motivation - to close the gap between what is said and what is the reality.
Good post.
Http://tanyamarlow.com
Thanks for your comment, Tanya, interesting to get a Christian viewpoint on the subject. To be honest, I had expected a little more hostility from that direction towards what I wrote!
DeleteIt is difficult to look to the future with this condition, you want to have hope and believe that things can get better, but not too much hope because you feel stupid and disappointed when nothing happens.
For what it is worth, I have made some solid improvement in my overall health in the last six months, something I was beginning to think was impossible. Still a ways to go, but it is something. Though of course I don't believe that there is any "reason" for my improvement, beyond perseverance and luck.!
Good luck with the memoir.
I am 49 & have ME for 30 yrs & I have two sons who suffer with it also. I am not religious, I do not follow any religions but there is more to life than meets the eye & suffering in what ever form it comes, either chronic illness or otherwise, no matter how much you may not like it, or even resent enduring it, brings with it spiritual growth.
ReplyDeleteThe word "spiritual" is used a lot by a lot of people these days, and it can mean a different thing to each of them. Some people use it to mean a religious experience, others simply mean the emotional and psychological side of life, anything that is not physical.
DeleteI would be wary talking about "spiritual growth" in connection to ME, or any suffering. To me it is too close to ascribing significance to the illness. To your point, life experience of any kind should bring about some kind of personal growth or change, this is part of what it is to be a human being, to grow, develop, change in the light of your experiences. I don't think suffering, or ME, is particularly special in this regard.
We live, we grow, this is what human beings do. I know it is tempting to see meaning in suffering, for me this is too close to seeing suffering as noble or enriching. It is not, it is a life experience like any other, though not in itself necessary or valuable.
I couldn't agree more. Everything happens ... but not for a reason. What is the reason for people getting sick and lives being restricted or even ruined? I think things happen and we should all learn to live with them, grow from them and try and find some kind of positive from that situation, I think people can confuse those feelings with this god awful phrase!
ReplyDeleteYeah, the other phrase I hate is "whatever doesn't kill you makes you stronger" (Thank you Kelly Clarkson!) ME hasn't killed us, but it has made us profoundly weaker.
DeleteYou're right, it is how we deal with what happens that is important, and to get anything positive we can from even bad situations.
I hope you're doing ok now, it was worrying to hear about your 999 experience. You're having a hard time of it.
Couldn't agree more. Thanks for articulating this so well.
ReplyDelete