Here is part of the debate where someone suggested to me that in my world, the only price I might accept for Israeli crimes is Israeli blood. Then he invoked the Holocaust….does he have no shame?
“You see, dear friend, I am not as cynical. My hatred of Israelis doesn’t run as deep as the one you think I’m expressing. I’d be satisfied if they just gave the land back, or compensated adequately the Arabs who have fled, and ended the barbaric sanctions. But you see, if they did that, they would have to admit that they did indeed “steal land from…Arab[s]” – forcing hundreds of thousands into refugee camps and the others into total destitution and refugee status all over the world.
People talk about Holocaust as if it was the sole greatest crime ever perpetrated in human history – that is absurd. …[Certainly, it is a dark stain on the slate of human history, nonetheless…] There were, at least, they tell me, 80 MILLION indigenous people across the Americas that were slain barbarically; elsewhere in the world, others were napalmed – some are still suffering the effects of chemical warfare in Vietnam, Laos etc., to this day. I don’t think you see this, because in your logic, it appears, the blood of a Jew is more valuable than that of an Arab. The Holocaust cannot be the benchmark of human suffering – just because the Jews suffered in the Holocaust cannot mean that they have a right to self-preservation to the extent that they can induce suffering in the Palestinians – who had nothing to do with the Holocaust in the first place….it [just] doesn’t compute in the moral universe.
My grandparents, who are both now dead, had refugee status out of Zanzibar – fleeing during the Revolution. As it stands, I wouldn’t dream to go back there today and evict the African family now living where their home used to be, who probably had nothing to do with my grandparents’ loss; neither would I seek to put sanctions on them to starve them, squeezing them into submission. What kind of objective morality is this? ”
Incidentally, I have nothing against Jewish people, nor really Israeli people. Certainly, the crimes of their forefathers in displacing the Palestinians cannot be the sole reason for my opposition toward the Zionist project – after all, how can one blame someone totally for the accident of their birth. But that does not mean I can idly accept the crimes against the Palestinians perpetrated today. The vast majority of Israelis can, no-doubt.
How very true. Why don’t more people in high office pay attention to what he has to say? He was deserving of the Presidential Medal of Freedom (not that he’d accept it) – not that despicable creature Peres.
There is no pit deep enough for these fundamentalist warmongers – ‘I think even Hell will spit out Netanyahu in disgust.’ We just wait, and pray for our Gazan brothers and sisters this day, who are so barbarically trapped in that tiny spec of land yet are enduring the harshest of realities.
How very true. Why don’t more people in high office pay attention to what he has to say? He was deserving of the Presidential Medal of Freedom (not that he’d accept it) – not that despicable creature Peres.
There is no pit deep enough for these fundamentalist warmongers – ‘I think even Hell will spit out Netanyahu in disgust.’ We just wait, and pray for our Gazan brothers and sisters this day, who are so barbarically trapped in that tiny spec of land yet are enduring the harshest of realities.
Matthew writes yet another brilliant piece – this time explaining somewhat the hysterical rants of our dear Melanie Phillips – she is a truly peculiar institution. Moreover, in my opinion, she is the proof that the Forces that Be has/have a very dark sense of humour. She is simply one of those people that I cannot despise (even though many love to hate her); rather, I pity her warped view of the world and how she is in a state of bondage to the Zionist, Neoconservative and Fundamentalist Right demographic.
My favourite part of this piece is when he writes the following:
“A number of years ago when I paid more attention to the ravings found on the American blogosphere than I do now, I coined the term “truthspace”, referring to a kind of reality bubble where speakers and writers come out with claims that are demonstrably false, but this does not matter to their audience with whom they are ideologically united and they agree on the ‘necessity’ of these claims being accepted as truth, even if they are not.”
I wonder if hermeneutical arguments do indeed apply to her – is she merely a product of someone else’s ideology or is there something deeper, perhaps more pathological (in a philosophical sense) there?
You be the judge – but just in case you’d rather not I’d definitely recommend that you read Matthew’s post.
How tragic is it that such people, who shouldn’t be allowed to work with the vulnerable in the first place, are treated with such high esteem. I’ve heard of countless cases of patients who claimed to feel as if they were tortured under his department.
For how long are the community going to stand for this? Marginalised when we protest the inhumane treatment under the model devised by this doctor, or treated as malingerers when these treatment protocols fail to help us (as in my case – I relapsed during the process of being treated using the protocol devised and favoured by him) – what ever happened to patient-focussed medicine? Or rather, care-focussed treatment.
Goodness! Great job, today, dear American friends.
Fox has apparently called it in Obama’s favour tonight; looking at the stream from the Romney HQ in Boston, it is just so, so white. Funny that, eh…
I was so worried those 2012 end-of-the-world predictions were going to come true.
As a friend just wrote to me, “…Russia has probably turned the missiles back off.” – I’m inclined to not view this as merely rhetoric.
I thought today that I might savour the sky (even though I didn’t get out of the house at all) – I was so worried that we were on the precipice of having nuclear clouds lining our horizons had a certain crazy Republican won. I thought we might have been on our modern brink of the Cuban Missile Crisis – I’m sure that even people in the Middle East can finally breathe with some relief. The BBC has just called it in Obama’s favour (and he apparently did it without Florida or Virginia) – if that’s true – then it is nothing short of Grace. The Senate looks as if it has been retained by the Democrats too.
Moreover, he’s the only other President aside from FDR to win despite the economy being in such appalling shape .
Now, I’m not a fan of Obama – far from it (I wish Nader had run, really) however I cannot but share my elation with you, dear friends, because, to be honest, when a fanatical jingoist stands the chance of winning, it really sends shivers across the whole world, even in the West.
As I type, the BBC just called Nevada for Obama – a safe state for him, despite the unemployment. Let’s hope Obama get’s to 300 – it appears he may not have won the popular vote – but in 2000 I think Fox calling it for Bush is what probably determined the event, if Michael Moore is to be believed. Even so, perhaps my estimation of the Founding Fathers has just risen. Maybe they did know what they were doing, at least a little, after all.
A good friend of mine, Siraj Datoo (Editor in Chief of The Student Journals – studentjournals.co.uk) was in September on BBC World Have Your Say, as part of an interesting discussion on the protests across the Muslim world and from the Muslim communities in the West.
It’s a great discussion and I found it very thought-provoking. Yes, I know it’s a little late for me to comment – but in a narcissistic aim to feed my ego, I might as well chime in on the discussion.
If you’d like my rant and comments on this programme (very badly composed as I sort of zoned out and typed furiously over the course of a few minutes), I’ll include my thoughts under the link. Siraj’s blog can be found here.
I very much enjoyed this programme. I liked the French fellow – he seemed to have interesting things to say, but alas, did seem to speak a little from the privileged perspective.
I enjoyed this platform particularly because most of the panelists were articulate, educated, peace-oriented (although that’s the de facto human condition if you strip away all those things the higher powers use to divide us) – thankfully no fringe-fanatics were interviewed, no Anjem Choudarys or fanatical, angry, bearded clerics in sight, thank God!). Though the BBC is now an arm of the British Government in many respects, I think that this programme was pretty balanced and nuanced. Only that they didn’t discuss the problem of modern Western imperialism in the Middle East and the ‘global south’ in general.
The American fellow is moronic, if you’ll excuse me, comparing the President of the US to say the Prophet Muhammad, Jesus, Buddha etc – absolute madness. Most Westerners don’t feel about their leaders what Muslims in general feel about the Prophet Muhammad – he is seen as the paragon of virtue, of love, of humanity – I imagine the same way Christians feel about Jesus. If you actually read the histories and biographies of his life, his track record is far better than that of say, Sarkozy or Obama.
His talk (that is, our American friend) of freedom of speech in the States being a result of the struggle for liberation from British imperialism is a bit rich; many of the protestors, as was said on the show, live in the third world. They are affected by imperialism to this day. It’s all fair and well that the ‘free’ man can criticise – only he doesn’t realise that in his hand he firmly grasps the whip the beat at the backs of the barbarians he is trying to civilise.
More importantly, they are subject to rampant, unrestrained imperialism on the part of the US, Britain, the ‘free world’.
Do you think their burning of US flags and effigies of Obama are as a result of their hatred of ‘freedom’? As Chomsky said, it’s not that they hate our freedoms, but it’s that we hate their freedoms. The US has for decades continued to prop up the most authoritarian, fanatical regimes across the Arab and Muslims world (and elsewhere) – which undermines daily the dignity and freedoms of the Muslims. We saw it with Gaddhafi, Mubarak, the House of Saud, Ali Abdullah Saleh in Yemen, the Bahraini monarchy (now a client state), the Israeli government that for decades has massacred the Palestinians and Lebanese without restraint.. the list goes on…not to mention that they currently occupy two countries now in the Middle East. Don’t even get me started on what they’re doing across Africa, the Far East, the South Pacific.
Mahesh was completely misguided – liberating the Kuwaitis was a benevolent act on the part of the US?!
So long as this mentality of crazy, right-wing (party fanatical Christian Right) jingoism continues in the world, the West will never understand why it is the Muslim world feels under attack when symbols of their identity – especially their religious identity (no doubt the Islamic identity is the most powerful one extant today, the staying power and message of the Prophet hasn’t waned – which says something about the universality of Islam I think) – is denigrated.
Yes, the film was used as an excuse for violence – madness. But the anger, resentment, feeling of threat on the part of the Muslim world is not something they imagined. The US and Western imperial agenda is still alive, these protestors live in so-called ‘postcolonial’ societies (can you sense the irony?!) whose progress toward dignity, individual freedom, is constantly hampered by either US funds or Saudi petrodollars to prop up and perpetuate the most barbaric conditions – degrading the dignity of those Muslims, Christians and Jews who happen to live in those failed states.
As a community – we feel the frustration (as many of us more privileged in the West travel ‘home’ often) of our brethren, just as much as we feel under attack in or actual homes in the West because of this ‘softer’ approach toward marginalising an Islamic way of life in so-called democracies. The Prophet, hijab, halal meat, male circumcision, the Islamic moral code (that’s the whole of the Shari’ah – not just the punitive stuff the Right likes to parade on Fox News) – all of this is being sidelined in favour of something more ‘civilised’. Funny, I don’t see the Kosher food or male circumcision in the state of Israel as being demonised by our press in the West. But they do indeed seem to care a little too much about it in, Germany and France – where Muslims are a significant minority (as well as Jews, incidentally).
It’s ironic, is it not, that their aim to liberate those poor, oppressed, Muslim women in the Islamic world, they have to ban the burqa in France?! That’s just a pretext for something far more pernicious, sinister. Islam is coming under attack from a very influential atheistic lobby and Religious Right; my concern, and perhaps it’s paranoia – but if they continue to inflict this kind of neoimperialism and liberal arrogance on the Arab, Muslim and Third-World, and the Muslims (and perhaps even others) keep protesting both here in the West, and there, feeding the paranoia of the Religious Right and the secularists, the mass deportations might begin sooner than we think.
The proper response to such cartoons varies depending on the context of the people who are protesting – but certainly it should be a peaceful one. Moreover, the privileged Muslims in the West at least should pool their funds together – we need better PR. Thought it’s unfair that we are put in this situation to have to defend ourselves (people are uneducated about the Islamic world, about Muslims) – we need films, books, media of our own to be accessible, highly promoted – to build an understanding of what Islam has to offer to society, and what its potential can be as part of the ‘Liberal’ world.
I do believe in the tenets of freedom of speech – and if someone wants to disrespect a particular religion or institution – I will defend his right to do so. Only, he doesn’t realise that he has shackled himself to the state-religion, which is far more threatening, serpentine, insidious, far more dangerous than religion proper could ever be to his freedoms.
But I fear that by the time he realises it, it will be too late. Ah, the arrogance of the West (when I speak of the West, I don’t of course include countries in the Eastern bloc, or say the more developed countries in Latin America – I have far more respect for them, and to an extent the mediterranean countries, and their governments than I do for say the Israeli, British, German, American, Canadian, French, Autralian total Hegemon).
I quote Noam Chomsky way too much, but when he was asked about the politics of so-called secularist humanists who promote freedom (Sam Harris and Christopher Hitchens, specifically) and use their platform to promote an “aggressive foreign policy”, Chomsky responded (here):
“I think they are religious fanatics. They happen to believe in the state-religion, which is much more dangerous than other religions, for the most part. So they…both of them, happen to be defenders of the state-religion, namely the religion that says that ‘we have to support the violence and atrocities of our own state, because it’s being done for all sorts of wonderful reasons…which is exactly what everyone says in every state…and that’s just another religion, like the religion that ‘markets know best’..it doesn’t happen to be a religion that you pray to…once a week. But it’s just another religion as is very destructive.”
Finally -the West needs a culture shift; for some reason Muslims are expected to put their Western, nationalist identity before their faith – something that Muslims, I believe, are resisting – this is something that ardent secularists cannot grasp. The idea of liberalism and living in a free society from the perspective of minority groups is somewhat different to that of the secular, caucasian, affluent Right-wing.
But the fact that this sort of hate speech and rampant disrespect for beliefs that people hold dear – is just as much a damning inditement to the failures of a ‘free’ system that is solely based on the state-institution and of Capital, that ironically claims its virtues to be that it creates a context for universal acceptance, of respect. That it in fact can take place, in the first place, is very, very, telling. And yes, in case you ask, I would just as much defend the rights of Christians, Buddhists, Jews, Hindus, Sikhs, etcto take offence if their religious figures and symbols came under such attack, and I would, if able, attend their protests also.
I’ve written too much, bedtime!
P.S By the way, I don’t despise atheists/secularists nor do I dislike Right-Wing Christians – but their political agenda is and are, well… just obscene. I think they’re the greatest threat to actual freedom – especially the freedom to choose your own identity, your allegiances, your priorities is this perpetuation of the free, secular myth. It hasn’t been able to take the place of religious beliefs, something it has aspired to do for the last century, fundamentally because it misunderstands the importance in impact of religion and religious beliefs of the lives of adherents. But then that’s another debate.
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.
“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).
– 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):
I was so glad to discover that the aforementioned film is still available on Al-Jazeera. I’d definitely recommend that you have a look if you have the time.
I have watched it at least a couple of times – I think it portrays a brutally honest look into the life of perhaps one of the most principled public figures alive today. For those of you who think that this will be a little dry – I assure you it isn’t (or so I think). It is both an honest look at what it’s like to lead his sort of life – an academic – though not always valued by the establishment stooges is nonetheless an incredibly prolific and insightful figure.
For those who don’t know him, Norman Finkelstein is an American academic, a political scientist more specifically, and a son of two Jewish Holocaust-survivors, who just happens to be one of the most vocal and articulate critics of the politics of the state of Israel and Zionism. Perhaps after the late Edward Said – he is probably the most sympathetic and fair critic of the subject – despite himself not being a Palestinian.
He has been embroiled in various academic discussions, most notably with perhaps the most, umm…let’s say ‘voracious’ popinjays of the Zionist Lobby, Felix Frankfurter Law Professor, Alan Dershowitz, of Harvard University, whose book, The Case for Israel he labelled a “fraud”. BAD idea…
Though usually staunchly pragmatic, perhaps he was a little foolhardy and rushed into a conflict with the Professor during a live debate on Democracy Now! (with Amy Goodman) – a very interesting watch and someone has uploaded it to YouTube. He clearly won the debate. Hands down.
This, by my estimation, resulted in his being removed from his post DePaul University in Chicago (the rather curious reasons for which are discussed in the film), and a huge public outcry and campaign against his unfair dismissal, which was supported by some very high-profile personalities.
Incidentally, Professor Dershowitz is also featured in this documentary, so certainly I don’t think a case can be made that the film was one-sided.
I am really a fan of his – he embodies perhaps the most important of the characteristics of what it means to be human, that is, empathy, and hope. Moreover, watching so thoughtfully reflect on his life is quite a treat. Perhaps I sound rather like a sycophant?! You decide!
Heightened Senses 