Heightened Senses

Hello. I'm Imraan. This is the only thing I own outright; I write from time to time, in the hopes that free-association might save a trip to a sanatorium.

Tag: Politics

Living in this world; outrage at evil or seeing the Good of God?

Friends – all three of you! –  I thought I’d share a passage mentioned in the introduction to a translation of a short treatise the great sage and master, ibn al-‘Arabī of Andalusia, wrote to an aspirant. He seems to in some way, renounce the world and somewhat subvert traditional ideas on wayfaring (from what I gather), but this is a subject for another discussion.

I quote a short passage from the introduction, wherein ibn al-‘Arabī mentions his encounters with one of the elite sages and saints of God, one of the ‘abdāl’ about which he wrote extensive passages (as I understand it), in his most major text, the Futuḥāt al-Makkiyya – The Meccan Openings, and their cosmological roles.

Here is an encounter he had with one of them: [from ‘The Four Pillars of Spiritual Transformation,’  trans. Stephen Hirtenstein, (Oxford: Anqa Publications, 2008) pp 14-15]

“Apart from his own personal meetings with such saints, he also relates three incidents regarding other people that he personally knew and one of the abdāl: one as a part of this treatise, which involved one of his companions in al-Andalus…and twice in his Futūḥāt. The Futūḥāt meetings shed further light on the elevated degree of these men of God, who exhibit apparently miraculous powers:

‘I once met one of the wandering pilgrims on the sea-coast between Marsā Laqīṭ and the light-house [near Tunis]. He told me that on the same spot had he come across one of the abdāl walking upon the waves of the sea. He said: “I greeted him and he returned my greeting. This was a time of great injustice and oppression in the country, so I asked him what he thought of all the terrible things that were happening in the country. He glared at me angrily and said: “What is it to you or to God’s servants? Don’t speak of anything but that which is good! May God grant you help and accept your apology for this.”‘

I wonder, then, if this is a way (and I do recommend the text) if the Great Shaykh tells us to try to look past the apparent tragedy and carnage, but simultaneously to find ourselves less attached to the world and its outcomes? We may not need a Benedict Option, if in one way or another we are able to connect ourselves to the Divine through a process of gradual renunciation through some spiritual rigours? What say you? Do we need to be perpetually on-edge due to geopolitical or local concerns, or should we place our trust – though this is a matter of Grace – somewhere else? Someplace…Higher?

And now for something rather different…’How to Kill Mugabe’

Dear Friends,

So here’s something that I quite thoroughly enjoyed, that was put together by a classmate of mine from university (School of Oriental and African Studies, University of London in case anyone is interested) and a couple of her friends.

Expletives aside (please take this as a warning!), I think the underlying message is rather cleverly (though certainly not subtly) conveyed. I don’t know if a SOAS education (and alas, a couple of drinks probably – NO, I don’t condone this) contributed to this particular piece; I quite enjoyed how they lampooned this liberal postcolonial idiocy of looking at ‘Africa’ as a project and a playground, in the most crude and overt of senses.

Mo’ammed was perhaps my favourite character. His sentiments seem to echo a certain ‘type’ (though I don’t like typecasting) of person who I’m fascinated by and cannot in the least understand.

This was a pilot episode. If you enjoyed it, please share. If you have any feedback, I’d be happy to forward it on. Please excuse the somewhat poor production value (at this point I wonder if the subdued laughter track of sorts was cleverly intended…)

Free Thought

Recognition that control of opinion is the foundation of government, from the most despotic to the most free, goes back to at least David Hume, but a qualification should be added. It is far more important in the more free societies, where obedience cannot be maintained by the lash.

Noam Chomsky, Hegemony or Survival: America’s Quest for Global Dominance.

Political Language…

“Political language is designed to make lies sound truthful and murder respectable, and to give an appearance of solidity to pure wind. ”

George Orwell.

 

Sweet dreams, pray hard …you scumbag politicians, complicit and bought-off media, and Godless institutional oligarchs…

‘Let’s be clear what it at stake: services, people’s health and even lives. As Professor Terence Stephenson of the Academy of Medical Royal Colleges put it last week, doctors’ warnings had been ignored, and “unnecessary competition [would] destabilise complex, interconnected local health economies, in particular hospitals, potentially having adverse effects on patient services.”‘ Owen Jones, The Independent.

Please read this article – and if you’d rather not – here are my thoughts on the reforms to the NHS in a slightly broader context.

For those of you who voted Tory (that’s ‘Conservative) at the last election, and New Labour at the previous ones…thank you so very, very much.

As a disabled person who is in need of NHS services regularly, I have experienced first the sub-standard care that comes when you turn healthcare into a racket based on the coldest, most dehumanising economic principles…from being unable to see the specialists that I need fourteen miles away from my home, in the very city in which I live, as ‘there is not enough funding in the PCT to justify it’; to waiting over a year for an application to be heard with regard to getting in-patient rehabilitation (as yet with the case in limbo sandwiched somewhere between a bureaucratic fat-cat’s wallet and pool of blood resting in his chalice..)

..to being discharged by physiotherapists and occupational therapists repeatedly because my recovery has been ‘too slow’ to justify me ‘being kept on the books’ (how’s that for economic?) –  maybe four times in the last year – twice after just two visits…. – my being forced to see psychiatrists because the institutions were at a loss (both in terms of finances and morale, and even expertise) to be given drugs, effectively to shut me up and stop complaining (incidentally, these drugs have only had a negative effect on my health)… as I said, thank you, dear comrades.

…Yet there are countless others who have both lost their lives or have suffered the most dehumanising cruelty at the hands of an institution, and a government, and a complicit public, whose responsibility has been to protect the vulnerable. I didn’t plan on falling sick at 18 and not being able to contribute to the services on which I became forced to be reliant (no, I don’t have a sense of entitlement – just had a hope that I might be able to leave a better NHS behind for my own, and your children)… but thanks to those of you who justify propping up a godless financial behemoth, killing millions in far-off lands with money you have stolen from your own fellow citizens to fight for natural resources that you were never entitled to… you know what….thank you again.

…Forget just the atrocities committed against those of us reliant on the ‘welfare state’, and what grief we have to go through to ‘prove’ we are sick or in need, with less than 0.5 percent of us as fraudulent claimants to disability support… think how many months we are cut off from financial support etc, to be forced to rely on people who can barely afford to feed themselves…. There is blood in your hands, in all of them, in mine too… in your bellies because of the unjustified sustenance procured at the hands of your soldiers, in your wallets because of the circulated wealth that has come from robbing it out of the pockets of those who needed it the most through ‘savings’ (not ‘cuts’)…

But of course if you know not of anyone who is in desperate need of these services which were a birth-right to them, and to you, a part of the compact they have made as contributing citizens to this country, and to each other (that’s you included), you will sleep in relative peace tonight as the lives of millions of them are ravaged further after today. Sweet dreams, comrades.

…Hopefully Hell won’t spit you out in disgust… I say this not flippantly – but if you happen to believe that Christ died and arose for your sins this weekend…Happy Easter to you. Enjoy the festivities with your families… but think about this… how many others are you killing off for your sins? That you will never be able to be vindicated for nor redeemed, without an act of all-out sacrifice and nothing short of Grace… pray hard for your souls…pray very, very hard indeed.

Religion and the 21st Century…

Here’s a recent debate at the Cambridge Union featuring some rather interesting big-wigs – Drs. Rowan Williams, Richard Dawkins, Tariq Ramadan, among others! A friend once pointed out to me that sometimes, if not often, a lot of these debates are about rhetorical posturing -but we have come to an age where the only way you can make a systematic case, where people will actually pay attention to you, is if you host a public spectacle and allow charismatic people to speak (I’d say this is the tragedy of modern newscasting – although the latter is far more agenda-driven than most of us actually recognise). So, more power to those who partake and actually give up their precious time to engage with people who seem more interested in point-scoring than with any notion of ‘truth’.

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So, this is perhaps the first (and last) time I might find myself supporting Douglas Murray in anything – I was thoroughly impressed by his talk – at least in part- , despite the fact that on the whole, he has a knack for essentialising religion and religious people; however this was one of those rare occasions where I found, one the whole, that the ‘religious’ seemed to make a much more strong case in favour of their views. Now, despite being of a ‘religious temperament’, I tend to find that arguments from science, for example, as being a little lacking (to say the least), however I’m more convinced by Dr William’s/Ramadan’s/Douglas Murray’s (Lord help me for including Murray…!) arguments about human dignity, opposition to dogmatic humanism, and the search for meaning far more convincing and systematically sound – even if the latter disagreed with both the former Archbishop and the ‘Islamic Martin Luther’!

Anyhow, Rowan Williams – for whom I have a great respect – was on peak form (if only he had been allowed to speak like this regularly, and wasn’t demonised by the press as some sort of archaic despot overseeing an influential but fallacious worldview and dangerous power-structure)… Dr Ramadan made his usual case , polished, refined and I think quite fair (but I wish more people would take it seriously – somehow when hardened humanists face a reasonable ‘believer’, their minds somehow short-circuit and they often ignore what he actually has to say.

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Finally, did anyone spot the slightly sloppy “Nobody denies that correlation doesn’t entail causation, everyone who knows anything about it knows that correlation is evidence for causation…” – I’m no philosopher, and I don’t say this with any sort of polemical glee… but do they really let him teach at Cambridge…?! Or is he some sort of quintessential postcolonial subject whom they keep around for display purposes?

…Okay, that was a cheap-shot, I admit; nonetheless this perhaps demonstrates the fallacy, which Dr Ramadan accurately expressed, of essentialising someone with whom you disagree.

…Just in case you’re wondering what problem I have with it – the speaker cited that in Western countries that ‘more religious’ (however you measure that), there is an increase in all sorts of social problems, etc.; of course one could offer a counter-argument that secular states have historically been responsible for wholesale industrial death, in a greater scale than anything witnessed in history; moreover, tremendous demagoguery existed, nuclear weapons were discharged…hmm, correlation between a secular state and atrocity…ironic, ain’t it? Like I said, who in their right mind would let him teach Logic?

Evolving Education….the Insidious Tyranny of Science?

I’m intrigued by this piece reported by the BBC; we’re living in a rapidly moving postmodern world where the likes of ‘scientists’ or ‘naturalists’ (or however else they style themselves) seem to be dominating the discourse in the area of pedagogy, science, natural history, politics…

So when you read that schools might lose their funding from the Government because those at the helm do not necessarily favour Evolution by Natural Selection as the sole model for determining how complex biological life came into being (obviously without invoking a higher power/God), is it just me or is this where science gets dangerous?

For the past couple of centuries the ‘secular’ model of governing a state seems to have been the preferred one, especially after the Enlightenment, as it was deemed then that religion would  and already had become rather tyrannical and be inept at governing various groups of people fairly and without prejudice.

Yet I find myself living in a world now where the theory of Evolution by Natural Selection seems to have become the basic currency with which any discourse might be exchanged; now I have no problem per se with the theory of Evolution as a process for explaining to some degree of coherence the explanation for how life came to ‘be’ in the world – what troubles me is that Creationism is now being deemed as part of myth – i.e. religion.

(I must add here, of course, that it makes no sense to deem Creationism a mere folly – at its most basic level this lens suggests that there is a cause beyond this universe that at the very least, set our universe in motion. It does not necessarily mean that the world is some six-thousand years old as the Young Earth Creationists believe. I am happy to say that I am a Creationist who thinks life emerged, at least on the physical plane, out of a process of Evolution – remember of course, the gene-centered theory is now a minority position – but does that mean that I think that this is a necessary contradiction? I like the term Intelligent Design to sum this position up – what assumptions you make about my beliefs without questioning them, or by consigning them to mere myth  shouldn’t be a fault in me – rather it is the judgemental nature of science that we should take issue with (which ironically prides itself on being objective – something which modern studies in hermeneutics suggests is incredibly fallacious).

Moreover, I firmly believe that what defines ‘us’ as sentient beings has roots in something inexplicable by science – our ability to reflect on our own existence rather than be merely dominated by essentialist biological assumptions to me indicates that exists what Islam has always deemed the ‘fitrah’, that innate sense of the sacred essentially.

Is it just me or is science, of Scientism going to be come the new tyranny? I don’t buy that Science can be necessarily a moral agent for world, nor necessarily the prioritised objective lens through which we view it; historically it was the view of science and scientists that the world was created by a God which drove further explorations into His Mystery (forget the whole Galileo episode for a little while). Religion, or a God-oriented view of nature, as Professor Steve Fuller of Warwick University says, has been an instrumental driver of science – I am convinced that the meaning we ascribe to science was hermeneutically born out of the belief in God (just look at the science that came out of the Islamic world or in Europe); if we forget where science actually came from, and to how much it owes to religion, then science fails to have any significant meaning, nay, purpose, which scientists and apologists for Scientism suggest is a necessary agent for their work.

But science – more specifically the theory of Evolution by Natural Selection – shouldn’t have to be the modern meta-narrative of our world – the fact that we one day might be able to explain the physical processes that constitute our existence and the world that we observe around us does nothing to help us actualise in the world. Our purpose to understand or to know, or to create (all things that are certainly valuable things  -and as yet science cannot explain the need for our aesthetic agency) did nothing to stop the catastrophes of Hiroshima and Nagasaki, for example; except to tell us that those that are weak (and now I mean this in a sociological sense) are doomed to perish, either at the hands of the strong or out of the actions of the strong.

Proponents of science today that are trying to systematically reject the normative narrative that religions have to offer fail to see that their commitment to pure, objective science that might some day explain the world is becoming a force that can be just as tyrannical. It is because of philosophy and religion that we endeavour to feed and clothe and heal the hungry, the homeless that exist far enough outside of our communities to have no impact on our own worlds and our abilities to thrive in them; according to science, altruism is merely a biological function and not a end-good, moreover Evolution by Natural Selection has its own normative process and agency – that the strong survive and that the weak shall perish. Though we see it happen in the animal kingdom we do not see it as a moral problem – yet when we see injustices and such cruel realities in our own, we find them morally and normatively abhorrent. Why? As Dr Seyyed Hossein Nasr says – if indeed we are merely composed of atoms banging against one-another then our attempts at being ‘moral agents’ is pure ‘sentimentality’. So far I cannot think of an adequate argument against this.

Somehow it has come in vogue that invoking a deity seems to be something that is unscientific – as if to say that by invoking God one has just filled an empty space with an explanation, which in itself cannot be explained; yet the trouble is that within the philosophy of science, no-one can seriously claim that all explanations require further explanations for them to become true – in our cause and effect universe within which we find ourselves, that is tantamount to invoking an infinite regress.

Remember, Newton didn’t know what gravity actually was, rather, he was able to explain the effects of gravity were – does that mean that gravity itself doesn’t exist or is an inadequate explanation for what he observed? Of course not.

If indeed we emerged out of a slow process of biological evolution which by some miraculous chance allowed us to exist despite tremendous odds against that chance, does that mean that because we cannot explain the origins of the universe within which we are found, that same universe in which evolution could actually occur, does that mean necessarily that it is an unscientific explanation? Certainly not on this account too.

Now whether you favour a ‘naturalistic’ explanation to the cause of our universe, or whether you think that it is better explained by an uncaused cause – surely you should be allowed to offer both, or other explanations, as part of a scientific education. Moreover, surely educators should be allowed to express which of those theories they actually believe in.

In my experience it was those teachers that expressed their opinions in the classroom that had the most profound impact on my education, those who spoke out, who weren’t afraid to challenge the conventional wisdom (recall, this is constantly being redefined – not a hundred years ago were women considered cattle or the expendable commodities of men, not a few centuries was it certain that the world was flat, not a month ago was it believed that a supermassive black hole could ‘exist’ at the centre of a small galaxy etc). Today, science tells us that biological life for a given individual begins at the point when two gametes meet, yet that same science cannot tell us whether it is actually ethical to terminate that life, even though it increasingly provides us the means to do it.

As a student of history and politics at university, or as someone who has an interest in religion and philosophy – the theory of Evolution has done very little to change my approach to these disciplines; the notion of the survival of the fittest as a model for perpetuating life has very little to do with my studies of the past, or my ability to grasp theological positions. Moreover, having studied both the theories of Evolution and the case for ‘Creationism’ (argh I hate that term), I have come to a conclusion for myself. I do not think that scientists have the right to tell me what to believe  – knowledge has to come from a perspective of reflection. The obsession with purity or an arrogance of superiority is/are what were traditionally ascribed to organised religion; today as religion is increasingly dying in our society we see science filling that space. Nature does indeed abhor a vacuum, after all. But scientists cannot agree to it because they refuse to recognise their own fallacies.

We have thrived for millennia without understanding Evolution in the way science explains it –  I do not see it as the theory that will be our Saving Grace. For that, we need to look within ourselves, not merely at ourselves.

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Finally – it’s worth watching Steve Fullers short interview on Intelligent Design – it’s about 7 minutes long and worth every second, in my humble opinion.

World of One Room

Dear friends,

I pray that this finds you in the best of health and in great spirits. Today I’ll take a break from political things as it has been a while since I spread some ‘awareness’ of the neurological condition called Severe M.E (myalgic encephalopathy) the experience of which I am a lucky participant!

Thankfully, most of us aren’t afflicted severely, though regardless of that fact, this condition puts an immense strain on your life, and on those around you – there are at least 50 recognised symptoms for it, which can manifest in all sorts of wonderful combinations.

Much like M.S 40 years ago was considered some form of hysteria until proven otherwise, I am a firm believer that M.E isn’t purely a psychologically-stemmed condition, nor is it just psychosocial, and the only reason why is that I have experienced it in its milder and moderate form, before relapsing very suddenly last year.

At present, there is no known cure for M.E (which I suspect may be a spectrum of disorders emerging together, perhaps triggered by something specific), nor does it appear to have a single, root cause or an agreed upon treatment method. It is often called chronic fatigue syndrome, perhaps rather mistakenly – I assure you, this goes far beyond any sort of fatigue we know of first-hand, leading the lives we do in the modern world. I long for the days fatigue was my biggest problem.

But the reason I campaign for it isn’t because i want to prove to anyone that this is a purely somatic condition; my reason is that I want to demonstrate how real the suffering can be. Since at least the late ’60s, the medical establishment has been squabbling over whether or not this condition is indeed ‘real’ in a physical as opposed to being psychological (although today we know that many psycho-illnesses manifest in various brain-scans), arguing over where funding should be dedicated – this undoubtedly affected the way policy makers saw the condition, which led to great strain on the part of patients to receive suitable care…all the while the doctors and bureaucrats neglected to realise the immense suffering experienced by millions all over the world.

I beg your understanding; I have no intention of making this a ‘pity me’ post – certainly I am pitiful enough without M.E; but in an age of competing discourses, where celebrity endorsements are needed to publicise diseases, poverty and human cruelty, before our policy makers act with the last of their integrity hardly intact,  I hope that I may make a small contribution toward sharing with others the plight of our brothers and (more often, sisters) in humanity. Though it may be true that this condition is more often found in the ‘Western’ world, I assure you, suffering is still suffering.

One of the very severely affected, Jessica T. who is currently in hospital, made this video along with her family over the course of four months. Thankfully, I do not have it as severely as her (and I am slowly on the mend) – though when I was at my worst last year much of this rang true for me, especially at night time when I was alone, oddly enough;  had I not received some sort of intervention at the time, chances are I may have suffered a similar fate.

She writes on a Facebook group:

“I have made this short video over 4 months with my family to try and raise awareness for severe ME. I’ve been suffering since I was 14 (I am now 21) and have been completely bedridden since 2006.

Please share this with your friends and hopefully your friends can be the voice for the voiceless.

Thank you so much”

Please could you take five minutes to watch this please, and share it  or this post widely on your own blogs or social networks  – I would be so grateful. *I warn you, some scenes may be rather harrowing if you have had no experience of Severe M.E – but this is the grim reality for countless thousands nearly every waking moment”.

Also, I have repasted below the appeal I wrote for M.E-Awareness Month, which you might find helpful in gaining further insight, in addition to including links to various charities dealing with M.E and M.E-sufferers.

Until next time,

Imraan
Even after all this time,the sun never says to the earth,
“You owe me.”
Look what happens with a love like that.
It lights the whole sky.  Hafiz.

    ‘Silent Screams’

Imraan Sumar, London, England.

Opening Quote, from Emily’s Appeal:

“As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.”

When does a life lived become a life lost? This isn’t an attempt at being clever nor rhetorical, for I am neither. However, as I write this, my heart – and those of countless others – beats and in between those beats resonates almost nothingness.

The plight of those afflicted is beyond words, not because it is indescribable but because the level of empathy required to appreciate its severity and extent goes beyond ordinary human capacity. Yet on the rare occasion when one is afforded such dignity in the form of the understanding of her physician or specialist, there is not much that can be done.

How unrelenting are the nights, or how treacherous are the days? How many countless lives go hidden, and forgotten, except when they reach out, demanding to be heard through ‘silent screams’ because their ears cannot bear to hear the owners’ own voices, or when a cry for help results in countless hours of physical pain and suffering?

There are many reasons for which I write this piece. I warn you now that to a great extent, I intend it to be a piece of activism for a condition that, though well-known in the UK, has had a negative press, separating the condition from the sufferer.  I have no major expectations for this article; I can merely hope that, by helping to inform some of today’s students and tomorrow’s leaders, the discourse would be made more flexible, and that something would consequently be done about M.E.

This week is M.E- Awareness Week; a period intended to bring to the public consciousness the plight of the two-hundred and fifty-thousand (or plus) sufferers in the UK, of a condition whose origins and causes remain unknown, whose experience is very subjective, and whose reality can be terribly cruel.

(Note, this is a long piece. If you’d like to read the conclusion, click here. )

I often think of it as a selfish disease because it is a very inwardly affecting condition; contained within the body is (for want of a better word) an ‘entity’ which can mar every aspect of one’s life, [from communication, cognition, movement, mood, to the sensory perception of the world]. I’m sure fellow sufferers would agree that their bodies, for much of the time, can turn into cruel prisons. And this isn’t an attempt at rhetorical flourish. A prison, in my view, is a peculiar social institution; far more restrictive, regimented and self-contained, entailing entrapment of the inmate’s ability to do the smallest of things, for which s/he is at the mercy of the guards.

Those guards, or symptoms, which are often present in many cases include extreme fatigue – far beyond any fatigue imaginable, to extreme cognitive impairment, ‘brainfog’ – where speaking, planning and executing of the smallest tasks becomes a gruelling battle of will against oneself; and very disturbed sleep or insomnia, or hypersomnia. Pain, which in many cases can affect the joints, muscles (and sometimes) skin, makes physical contact, exertion and movement very limited. Sensitivities are heightened – (though I don’t drink) I imagine it as having a perpetual hangover; one can become so sensitive that even the dimmest of lights and sounds can send me and others howling with pain, although really, the screams in this case might be silent as sometimes even our own voices can be too much to handle.

Other symptoms can include nausea, muscle weakness, cardiac problems, vertigo, depression, inefficient thermal regulation, abdominal pains and irritable bowels, compromised immune systems, post-exertional fatigue lasting for days, weeks, even months. Perhaps most would agree with me that in whatever way it manifests, one can’t help but to actually feel very ill almost all the time. According to some, there are over sixty symptoms recognised in this condition. Of course, merely listing the symptoms doesn’t begin to do justice to the actual experience of them.

Quite likely is that you have passed someone who lives with this condition; although you might not always recognise that this person is unwell, that (more often) her body is undergoing immense strain, that she is feeling so physically sick that it taints her every experience. Around three-quarters to four-fifths of sufferers experience ME in a mild to moderate capacity, where they may experience some degree of many of the symptoms, and even then, it can have dramatic consequences on the quality of their lives.

And quite likely is it that in their position, they couldn’t (quite justifiably) perceive that their experience could get any worse. Not just in terms of living with and in a body that reacts horrifically at the slightest exertion, but getting support from doctors, social services, benefits agencies, simply because they don’t ‘look’ unwell, or because there aren’t any tests which categorically can diagnose this condition.

You would be quite within the mainstream (and possibly very logically so) if you thought that by this point, M. E. sounds a ridiculous or made-up illness; and unless you had experienced such a plight or similar, or seen it first-hand, you could not understand what a toll this disease, often (flippantly in my view) called ‘chronic fatigue syndrome’, has on a person. I, along with many, would (probably) long for a day when this ‘fatigue’, as defined in the general lexicon, was our only barrier to leading an ‘ordinary’ life. But for most, the reality is much grimmer. To most, the sensation of feeling so incredibly sick, as if [one was running a gruelling marathon whilst suffering the worst flu of their life], is in many cases, something which consumes most of one’s daily life.

Only that they’re not running a marathon; instead this feeling of dis-ease would be brought on by simply preparing or consuming a meal, getting dressed, brushing one’s teeth, reading a few sentences – all of life’s mundane activities that need doing somehow –  become a battle of physical, mental and emotional resources.

Yet at its worst, M.E might feel like not merely a prison, but a slave-labour camp where cruel torture is executed on the inmates, often without logic and with extreme prejudice. Again, no flourish intended. Some fifty-thousand sufferers in the UK are predominantly housebound or even bedridden totally, for years; leaving their houses rarely, but always in wheelchairs or on stretchers. The symptoms can include transient or even long-term paralysis, (often extreme) jerking of the body, seizures and unholy pain for which morphine is often not enough.

At its worst, sufferers are confined to their beds, not able to sit up, are fed through tubes going through their noses or directly into their stomachs; they can even often become temporarily blind and mute, and without necessary cause. Unable to bear the slightest light or sound, these patients are denied the luxury that is mere conversation for even a minute, constantly needing to reside in a dark and silent room to stop the body from experiencing even worse pain and overreacting to the slightest stimulus, and the (feeling of) suffering which, to the untrained eye, is incomprehensible, but to the sufferer, is incomprehensibly real.

What is scandalous is that the trained eyes, for example, doctors and other healthcare workers, often refuse to believe, let alone acknowledge, that the suffering exists. This applies to all cases of M.E., mild or otherwise. Governmental funding is extremely limited, despite the condition’s relative frequency, and even larger than we know, as many cases are misdiagnosed, or dismissed by doctors altogether. Many fall into the cracks of a rather broken system.

It is a well-known fact, at least within the M.E. community, that much of the funding goes to psychiatric interventions, or graded exercise in the form of physiotherapy, which, though helpful to some, have made others more ill due to forced rapid overexertion.

I for one, am confined to bed for about 21-22 hours a day; I spend most of the day reclining or propped up, either with my eyes covered or wearing specially made darkened sunglasses in a room with blacked out windows, as far away from the noise of the house as possible, yet still often having to wear earplugs. I have ongoing experience of the seizures, the (thankfully very transient in my case) paralysis and extreme pain for which five painkillers (including morphine) doesn’t always suffice. As a student, I have twice dropped out of university, due to ill health, and experienced times where reading a couple of sentences resulted in my falling asleep on the floor of the university library floor for hours.

But others aren’t so lucky as I. I can have fairly lengthy conversations (for which I often suffer immensely afterwards), or can be propped up by pillows and cushions for some time. Once or twice a month, I can have friends over for short visits, sometimes longer ones. I have the luxury of being able to go for a short wheelchair ride out of the house, given adequate preparation and rest beforehand. I can eat a meal because my nausea can be controlled by three different medications. Other luxuries include being able to watch the odd TV programme if the light and sound sensitivities subside. To sit unsupported for 25 minutes at a time. To hold up a mug most days. To use cutlery. To wash my face or hold up a toothbrush to my mouth. But, like I said, others aren’t so lucky.

Link to conclusion should lead the reader here.

The recent death of activist and campaigner Emily Collingridge, piece (whose death was only covered by the Guardian here) who died earlier this year at age 30, after her 20 plus year battle with severe M.E, goes to show how horrific and tragic M.E can be. Her appeal to the world can be found here, which I urge you to read; from which I drew much inspiration for this piece.

I am in no position to say that mild or moderate M.E., is less significant in terms of the sufferer’s plight, as compared to that of the severely affected patient, because I have been there and at the time found it unimaginable to get any more sick; but I hope I can do some justice to those more severely affected than me who have simply been whitewashed out of the public discourse, whose ‘silent screams’ (as a fellow sufferer Chlay put it in her charity single for the ME Association, Silently) whose silent screams, go unheard, because, conveniently, they are unheard.

Countless cases exist where patients have been denied access to benefits, care (even from unbelieving family members), support from their doctors who could often dismiss them as being ‘depressed’, and thus, due to forced overexertion became far more ill than they might have been, had they received the correct support early on. Patients are left self-doubting of their illness, often forcing themselves to simply ‘snap’ out of it, trying to push themselves further in the hope that what ails them would simply disappear. But this often results in is relapse, an exacerbation of all of the previous and new symptoms, rendering them worse-off than before, plunging them into new, unimaginable levels of M.E.

 As yet, there is no cure nor a known cause for M.E, and in a way, one might wonder as to how an illness can exist, if the miracles if modern medicine and science don’t know what it is.  Some moderate cases, even severe ones can make full or significant recoveries, though a combination of very strict pacing, some graded exercise (**though this can be counterproductive or even damaging if not done very, very gently, and under proper guidance**), nutrition, and luck.

But even so, its grim reality is one that sufferers have to accept, and sometimes, it is by virtue of having to accept its grim reality very fast that is the only way of coping and adapting to this often relentless, sometimes remitting, and always uncompromising and volatile condition, which we include in the folds of the definition of our lives, because it is so pervasive.

We find comfort and hope in the idea that one day, our bodies might rally, as they occasionally do; or in the friends we have; or the activities that we can manage without too much difficulty, because life, even ours, is a precious commodity. It’s such a shame, it can often pass us by. Looking out of one’s window at life, for now, has to suffice in many cases.

Lives stand still, yet the world outside continues to speed ahead with almighty force. It’s not as if we live in isolated bubbles; for those whose eyes can actually bear to see light or have not been blinded by this awful condition – and many of us spend most of, if not all, our lives behind blackout-blinds or thick curtains or lenses of sunglasses in our bedrooms – the seasons and climates change, flowers bloom and die, families grow up and expand around us. All observable, all certain. There is no quest for eternity here, no hidden agenda that the sick continue to cry out for more than what life owes them, no unreasonable demands are asked.

But what life does owe them, aside from certain death, is life itself. And in order for us to die, to have lived would be all that was asked. They would, as I’m sure they’d tell you if they could, those who were not rendered mute or forced to speak in whispers, look forward to death after having lived.

Again this is no attempt at rhetoric. In fact, rhetoric is what serves to undermine the cause, to strip us of our dignity to actually just be ill.  The rhetoric of arrogant psychiatrists, unsympathetic relatives, cruel friends and, harsh realities of social institutions designed precisely to protect the vulnerable. To change those things, even without an imminent cure lining the horizon, could make a world of difference.
 Links:

 –     Emily’s Appeal (can make for very hard reading. But please read it if you can find the will).

–     Chlay’s Chrity Single for the ME Association – Silently

–     A great M.E-Awareness video  from last year’s appeal by a sufferer, Daisy. Please share via Facebook, Twitter etc.

–     The Association of Young People with ME (a charity that has helped me immensely by providing a support network, for those looking for such help):

–     The Hummingbirds’ Foundation for ME (has some great articles on the subject)

–     Emily Collingridge’s Website – which gives information about her book, which she wrote whilst bedbound when she was more well (and an excellent resource for patients, parents, carers, siblings, etc.), sold through AYME (see above):

–     The ME Association

–     Action for M.E  (“Action for M.E. is the leading UK charity for people with Myalgic Encephalomyelitis (M.E.) and their carers.”)

Piers Morgan meets Ahmadinejad

I think that this is a fantastic interview – for the most part, Ahmadinejad was very clear, very forthright. Whatever you make of his politics (and I’m considerabely more ‘Leftist’ than he is), I must give him credit for being one of those few political leaders who speaks honestly, makes no apologies for his beliefs and isn’t polemical in the way you see Western Leaders are.

If you have the time to spare, do watch this interview, please! The translator did a very good job too.

Best,
I.

PS – I know some will not watch this because they’re not fans of Piers Morgan (I don’t like him much, but prefer him to Larry King in a way because he’s more honest about what he doesn’t know) – but this was a fairly sympathetic and friendly interview. Just wait for the bit where Ahmadinejad tells him off (in his usual quiet fashion) for demanding answers based of what the former believes are false premises!

Seen it…? What did you think?

A Truly Sad Day for the Left

Alas, my eyes are tearing at reading this. I’m not one of those people who’ll easily rally around a flag, and nor do I believe in the cult of personality – that’s usually (in my humble opinion) the way of the demagogue and their ilk and followers.

However I’ve just found out that Ms. Yaqoob has resigned from the Respect Party, of which I’m a proud member –  the reasons, though not stated below, are probably obvious to most – though we’ll see if this gets any news coverage in the next few days – if only to villify Mr. Galloway MP.

Finally, I had thought – there was a decent, straight-talking principled woman of colour and of a minority religion who might actually suggest decent policy ideas and be able to help rally a grass-roots and/or working-class movement in the UK (for those three of you who read me, you may or may not know that I’m fanatically Leftist!); I was hoping that she’d actually be able to help redress the imbalance of coverage and negative spin on Muslim women in the UK (Ms Warsi doesn’t appear to be making a positive impact, and her relegation in the latest reshuffle just goes to show how tokenistic her appointment in the Cabinet was in the first place…-plus, she’s a Tory – yeuch!) – and my hopes were that this was a positive step for British politics. Especially given the tone of ‘Muscular Liberalism’  from our Fearless Leader and the notion that multiculturalism had ‘failed’ in Britain  – she was supposed to be our saving grace.

A friend tells me that this is probably the end of Respect as we know it – they already lost Kate Hudson as the candidate for Manchester Central last week, and in the last few years the SWP and other movements haven’t appeared to get on with Respect proper… I’m wondering if I’ll have to shift my political allegiances…although that’s a pretty cheap thing to do in the end, as I still believe in the tenets and credo of Respct.

Back to the sordid, smarmy tripartite menage of UK Politics then. This just really sucks. If Respect is to collapse or lose momentum, it will set us, as the multicultural community (no, not just male Muslims of South Asian origin) back by several years; with the rise of the (might as well be) militant EDL (God help us!) and the BNP (some sort of cosmic joke?!) and the increasingly disenfranchised white working-class in Britain – this spells disaster….unless we can find some other voice that screams out in longing for the equality, respect, and community-spirit we so desperately need

Britain isn’t broken. Don’t get me wrong. But there are several interest groups seeking to widen the cracks, then create and deepen chasms in our society – moreover Government policy doesn’t help, and won’t help. This isn’t a problem with the various ‘cultures’ and ethnic groups in Britain – I think it has more to do with a fundamentally different approach to nation states (see my anarchism seep through?!) – that we are able to hold more than one allegience, with integrity.

One might think that the minorities were struggling to integrate  because they/we don’t have a voice or a plurality of them – but it is more a case  that up until recently, and at least and especially since 9/11, our voices were easy to ignore – so long as the Kebab shops remained open, Britain worked fine. And then Respect came along and gained a fair amount of positive coverage – its figures often asked to speak at televised debates/discussion programmes (better them than that Quilliam lot – egh!)

Now, there doesn’t seem to be a competing, dignified political platform for ‘us’ to join (Labour’s recent fielding a male Pakistani Muslim in the Bradford West by-election just goes to show how tokenistic and shallow Labour politics are).

All doom and gloom?! I pray that I’m wrong.

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