On illness, physical and psychical, and ontological dignity

June 3, 2014

In Blog



Now, as an aside, back to our conversation that I delayed by 5 months! (and apologies once more). As you know, the condition with which I live, ME, myalgic encephalomyelitis, is a treacherous one. It might be known as ‘chronic fatigue syndrome’ in the US, but this is a travesty of a designation. This condition has robbed me of my independence, has rendered me bed-bound almost totally for the last there years to the point that I can often not sit up for more than a few minutes at a time, nor leave the house independently, and need to be reclining for some twenty-one or twenty-two hours a day to help alleviate the perpetual and veering symptoms, and to prevent relapse or exacerbation. “Cue the violins!” I suspect my doctors would say.  But that aside…

Thank you for your encouragement; indeed, I’ve taken this on-board and am in the process of trying to set-up a focus group to assess the needs that ought to be met as pertains to ethnic minority patients suffering from long-term disability. Actually, I’ve found that there are cases where ‘invisible  illness’, as is now fashionable to call it, can cause tremendous chaos in the lives of those afflicted. Civil society hasn’t caught-up as yet to cater toward particular demographics, especially as they relate to the immigrant communities in the UK who, given the nature of their cultural/social arrangements, family dynamics, social pressures, can face a rather unique set of challenges when fallen ill.
Indeed, it affected my family tremendously – (alas my condition tends to, for the vast percentage of time, afflict middle-aged Caucasian females  ! – I think there’s some Karmic irony here as I’m a twenty-four year old male of South Asian stock!) – considering their concerns of having been raised outside of the modern ‘West’ (whatever that means!) and having battled tremendously to overcome their financial poverty, their main worry has related to how I might, seeing as I had to drop out of school twice upon falling ill, feed myself or have any meaningful (I suppose in that case, they meant it material) self-sufficiency as an adult. 
Latterly, you won’t believe how many faith-healers, exorcists (!) – I’ll save that one for a further conversation! – and community elders I’ve been made to sit before, how man times I’ve been scolded for having ‘given up’ on my life, how many concerns others have had at the prospect that I might never be able to marry if I’m broken (!), and so forth. That I’ll starve to death…
Or at least, that’s how it used to be. Thankfully, my parents and family finally understood how debilitating this condition could be, after a couple of hospital admissions. In fact I don’t think some close friends could take me seriously until then. They, my family, are pretty supportive, although there are times still when they cannot comprehend the nature of my struggles. A couple of months before he passed away, my grandfather (this would have been in November of last year) was weeping at the thought that perhaps his family might be cursed. 
It was heartbreaking, and still is, to see how much pain they’ve been in; in fact, I think the trouble facing this particular demographic (or perhaps it applies to all minority groups) is that they haven’t a support-network that can assure them that despite the fact that one’s health is poor, life can still continue for both the family and their loved-one and – at least once the existential crisis fades a little (!) – there are plenty of moments in which one can find joy and a sense of being at-rest in the world, despite the particular challenges.
But others that I’ve heard of haven’t been so lucky as to have relatives, and friends who could be so supportive.

I’ve realised it’s actually harder for young- women in my community to be open about their health-problems; whether their families fear that they might not find suitors and be subject to living life ‘alone’, or that it might be seen as drawn unnecessary attention to their selves (or a plethora of other factors and worries on the part of their families). I suspect a lot of this is because of the heavy social burden placed upon women; that said, of course, the same could be seen to apply in this part of the world, too.

Perhaps, these difficulties that they face with getting understanding from their families,  come out of misplaced priorities – especially from among first or second-generation immigrant communities that often came out of poverty, as in the case of my family,  hence their internal dialogue is dominated by themes of worry over poverty, social stature (determined pretty significantly by one’s financial means), and so forth. Perhaps it’s a mechanism developed in order to ‘survive’ in the new world that they arrived at. Such seems to be the strength of this internal dialogue that it seems to translate into a very rigid narrative; certain values and dignities that are afforded to the unwell under say, a welfare state (though I’ve found that the world here is much colder toward the sick, family structures disintegrating around us by every turn of policy), are forgotten – though these would otherwise have been much stronger ‘back home’ – with the burden then placed on ‘survival,’ often at the expense of the sick or less-abled.

I try not to see life so cynically, or at least pessimistically..  In time, I hope, this will change. Though the world around me gives me plenty of cause to worry that new communities will be sucked-into, nay, consumed by, the vortex of cold Capital and the rampant reductionism of anything worthwhile or sacred to either some sort of Darwinian sociobiological structure or survival mechanism; as I think the theologian David Bentley Hart put it in a book of his I’m currently reading – The Experience of God: Being, Consciousness, Bliss, which I cannot recommend highly enough if only for the prose, though the philosophical approach is very well-learned and rigorous – the disappearance of any notion of the ‘formal’ or ‘final’ causes. Though I wonder how-seriously we take Aristotelian philosophy these days, and I can’t say I’ve read very-much at all. I like to think I’m taking a more theological look, a long-view of history and the ends of the Almighty.

Maybe I’m clinging to theology out of my desperation at a body that betrays me at almost every turn;  the Islamic tradition with which I was raised sets out a  theology that asserts that one’s sustenance (provided by the Lord who is the Sustainer) is already determined for you. That your soul shall not leave your body until that last morsel of your sustenance touches your lips. 
That of course doesn’t make one a defeatist, but it seems to settle my soul sufficiently to think that these things will somehow be resolved through struggle or otherwise; nonetheless there are so many other blessings available to partake in – moreover it is a reminder that there is, or at least ought to be (if we don’t subscribe to this particular religious worldview), something greater with which to concern ourselves; life is too-precious to spend worrying only about how you can even marginally increase the balance in your–bank account, especially given the opportunities available to us living in a relatively affluent part of the world.
 This is something my elders will never–understand fully, I fear, given that they’ve had to live through unimaginable poverty and indignity at the hands of various institutions and people, the calamities of post-colonialism.
Perhaps I’m too naïve or even engaged in sophistry, even; I suspect that time will tell. But I look at the world that is being left to my generation and our children, a world that we’re actually perpetuating because of our worship of the material existence and our financial means. 
An obsession with securing the next Dollar or Pound seems a plight that doesn’t just afflict the poor; it’s one of those paradoxes that emerge out of the human condition indicating to me that we haven’t, as a society teetering  on the edge of self-immolation (as Dr Chomsky always reminds us), corrected our priorities. We have set-alight the world around us; any institutions that our grandfathers built (though mine alas were still colonial subjects into the 1950s in East Africa!) to help foster a society that honours each human being are rapidly burning to a crisp. 
Whatever else the free-market and modern economic arrangements offered us, the calamities and human carnage inflicted upon this world by the wanton disregard for the sacredness of other people’s lives, led by our financial institutions, whose coat-tails are clung to with an almost fanatical zealousness by our policy-makers…well all this seems to be a quite-telling symptom of the pathology at work! 
Maybe we need to remind ourselves that we are not some mere Darwinian collection of atoms and molecules that make up a carbon-based biological machine (reminds a little of Foucault’s prophecy, I think, in Discipline and Punish) at the end of a long inferential chain of Darwinian Evolution that ought merely to congregate as a society in order to feed ourselves and out-breed the other primates. No matter how-much a Sam Harris or a Richard Dawkins might protest. 
Again, as Dr Chomsky reminded us, the humble beetles (or was it cockroaches?) have a better track-record at survival, considering they out-number us immensely. And their ’social’ arrangements  are certainly not as sophisticated as ours! 
Perhaps – and though I don’t take an sort-of evangelical or proselytising position on religion – we seem to have lost the a priori assumption of a sort-ofontological dignity that each human being possesses that the religious traditions offered us in times past; as such, we have lost any notion of the ‘sacred’ outside of a mere fetishisation of the ‘choice’ that a free-market delivers – and these choices are alas catered to deliver a service to the hedonist in each of us…I lament that any notion  of ‘meaning’ in this world is rapidly vanishing because of the fact that our social institutions are now, or soon to be, an infernal testament to the destruction of human dignity at the expense of the Will that is obsessed with its own pleasure or gratification, or where that next-Dollar comes from. 
I think often of a saying attributed to Christ – which appears in the Islamic tradition regularly as a warning to be wary of an obsession with the World:
“The lover of the world is like a man drinking sea-water; the more he drinks, the more thirsty he gets, till at last he perishes with thirst unquenched.” 
Maybe it’s more than mere fetishisation – I’m increasingly convinced that we’ve begun to worship this modern notion of the ‘Self’ to such an extent as a society that it is sure-bound for catastrophe. Heck, a figure like Richard Dawkins, when asked what the ‘meaning’ of the Universe is, can reply that if we all were able to choose our own ‘purposes,’ then we would be giving meaning to the Universe. Is it just me, and I mean this is all due respect to people who can actually believe this, but doesn’t this just reek of a self-serving hubris?!

Perhaps I ought to stop paying attention to people like him, yet this pathology is widely-manifest from among my generation who were raised in such affluence that they forget humility in the face of the abundant opportunities before them. It surely can’t be merely a ‘disease of youth’ as my mother might put it; the disease appears to have come from ‘some-where,’ even if it is self-perpetuating.

Was it not Foucault (though I could very-well be mistaken) who reminded us that the body is a discourse? How did we get to a position where we found it acceptable – in fact we demanded it – that we set-up ourselves and our pleasures as the object of veneration? 

To further the metaphor of the fire – I feel like our society is perpetually firefighting. Containment, rather than meaningful creation, seems the norm.
We keep enacting laws, instituting policies and civic actions to combat the most-recent unforeseen disaster of our most recent ill-thought-out social-policy. 
Whether it’s ins how we structure our educational systems and alienate children from the poorest background, to actively disempower and disenfranchise them so that the ‘machine’ of this consumption culture always has desperate workers to both fuel and run it; or whether we constantly harken back to a sort of free-market normative that places sexual pleasure as an end of itself, forgetting that various socioeconomic conditions will determine a tragic outcome for the victims of such a policy – and then are left with dealing with a vast number of single teenage-mothers trying to battle their way out of poverty to give their children a fighting chance; whatever it is, our supposedly ‘advanced’ world dominated by some myth of ‘progress’ is clearly missing something as an underlying or operating premise.
Now what with the expected lifespan of future generations to be close to a hundred years, , that is a tragic amount of time in which these people could be trapped in poverty and have their productive ends alienated from themselves at the hands of Capital such that the barometer of success occurs when they can assume the active alienating position of authority, when so much ‘more’ could be made of life. 
I’m increasingly convinced that maybe our souls are on fire. Maybe we need to quench the inner-world somehow (and no-amount of Freudian psychoanalysis I think will suffice to rectify it). We have subjugated all-manner of beasts in this world to the point that cows are fuelled with antibiotics (I mean, my generation needs to think about what that means – a hundred years ago who would have ever imagined a cow out in a field would be given antibiotic medication! -cognitive dissonance one might hope?!)– maybe as the mystics tell us, it is the beast-within that we need to conquer. We feed into our ‘lusts’ (as the mystics might put it) and wishes for only entertainment, sexual gratification, distraction, avoidance from encountering our real selves, facing our own death and coming to terms with the fact that this world is filled with ‘weapons of mass distraction,’ as Cornel West put it, and that we deserve, and should accept, ‘more’ from our selves. 
That change, alas, cannot be borne out of the external world with which we interact, I no-longer think.
In that sense, we are no different to the Islamists who we so arrogantly condemn from our pedestals. Is it not ironic that we seem to impose and institute certain structures in the hope that we might bring-about social flourishing, much like they do? 
Whether it’s free–markets; violent and rigorous nation-states; international law that possesses little logical content (as you reminded me), a self-perpetuating military machine to subjugate all who protest; financial institutions that exude indignation and act with impunity;  a scientific machine that seeks to settle men on Mars, or spend tens of billions of Dollars on supercolliders trying to locate an elementary particle that we will never ’need,’ nor  actually ’see,’ nor actually ‘use’ in our daily interactions with the world – basically that has nothing to do with the ‘lived’ reality of human beings,  when there are children in Palestine or the Congo that are dying of starvation!
 Surely this is the epitome of hubris; is this not a contempt for human beings? There’s almost a celebration of the  achievements of human beings, achievements that we use to debase and degrade our selves.
This is the sort of firefighting that seems to be so-prevalent in how we live today. We spend so-much time looking trying to correct the outside world when maybe the disease is within us – somehow rooted in how we see the world or what priorities we have and do set for ourselves, what our assumptions are about life and what the driving force for our behaviours and interactions ought to be.
Maybe I have the privilege of having this particular view of theology because I wasn’t born into abject poverty; yet there are tears in my eyes when I see members of my peer-group and  generation suffering so treacherously precisely because of the wealth or relative affluence in which they were born and raised. Some of them don’t see that their lives are emptier than they recognise. Whether it’s of serious moral discourse, a duty toward other human-beings, a worship of science and technology in an almost heathen sense (heck, look at what the Saudis are doing – they’ve turned Mecca into Las Vegas. Last month I read that  Paris Hilton now owns a boutique there, God help us, when libraries are being taken-down…so it’s not just in the ‘West,’ alas).
 A doctor friend of mine – a recent graduate – says that they predict the National Health Service will have fifteen percent of its resources dedicated to treating psychiatric conditions, in my life-time alone. Psychiatric illness is more-quickly recognised and diagnosed all the time; a host of different conditions, subgroups etc. are often described and added to the vast number we have already. 
I wonder, (and maybe this is my own idealising that has taken on its own hubristic pathology), if we might be able to do something about it should we re-assigned our priorities in the world. To have fifteen percent of the sick having to live with the utter treachery of mental-illness – and that’s just those that seek the help, let alone those others whose quality of life is diminished because of undiagnosed or untreated issues  – is an utter shame. How is it that as we get richer on the whole, we are so-much less happy?
Why do Sweden, where I was born,  and South Korea have the highest suicide- rates in the world?! And how is it that in the most medically sophisticated and advanced societies more of us are dying from diabetes, cancer, mental illness, obesity? It’s horrific and so, so tragic. Given the normatives of Capital and Progress, how is it that we celebrate our achievements in creating death all around us? Not only do the most ‘civilised’ countries in the world possess the most destructive weapons, they’re the ones that actively pursue their proliferation so that

But if course it’s not merely the weapons, or the diseases that we encounter, we hasten toward meaningless death all the time, I fear. All-these distractions merely shorten the time by which this generation experience the blessing of consciousness to look within.


That detour aside (and thank you for humouring me), I’m hoping to set-up some sort of charity/support network that takes medical professionals, people who work in pastoral care, rehabilitation, youth-workers etc to offer support to pockets of society and minority communities (who are often poorer) affected by a lack of state or -societal engagement in helping them find ways in which to find some sort of joy despite the hardships they face of long-term sickness. The hope is to start online with a support group to begin with (I’ve spoken to a couple of doctors, psychology students, medical students, community organisers, activists who are willing to lend their support and advice) – the only trouble is finding a core-team that could do all the running around in setting-up the beginnings of the project (there’s only so-much I can do from my bed!)
But for that, I’d like to thank you for your encouragement to me. Indeed, if I could mimic even a part of offering those seminal contributions offered by a Gramsci or a Helen Keller (and I thank you for the flattering comparisons),  I would certainly be very thankful. But it’s early days yet – have got to find a focus-group to see what the needs actually are! 
I had better leave it there; I didn’t realise how long this message would be – my screed would have included a lament about how we treat the environment and what we feed our kids – but I think I might leave that for another time!
With love, and thanks, and prayers (and wishing you good luck in your discussion on Head to Head – I look forward to watching it!)