There are those beings that have touched our lives in profound ways – guiding us with that torch of Hope where we only saw Darkness. Emily Collingridge was one such being…a Saint…a human manifestation of Mercy, of Patience, of Love.
Yet I had never met her – but the hope and help that she provided through her invaluable book on Severe M.E let me know, when I relapsed almost two years ago to the day, that I was not alone. When I was cast into a very dark and scary world of Severe M.E.Today marks one year since she passed away at the age of 30 – after a long-fought battle with Severe M.E – a disease which had crippled her since the age of 6. Yet in her ‘later’ years (and it is such a tragedy just to call it that), she wrote a book from her bed, over the course of a few years, even when she couldn’t physically write, to inspire both hope and pragmatism to the lives of the so many who have had to endure this vicious, crippling illness, not just because of what it does to their bodies, but the emotional trauma it causes to them, their families…and perhaps most tragically, to the strain it puts on the humanity of those who are supposed to be working in the compassionate profession.For me, Emily – through her book – provided as space of hope, of empathy, of understanding, where the medical establishment could do no such thing and shrugged their shoulders in bafflement.
I periodically post things about this condition – not only because it has contributed to making my own life extremely difficult these past six years, but because there are those whose suffering is much greater than mine. This condition has a way of ravaging almost all of your resources – where the physical act of living can be a struggle for your sanity. There are those who cannot raise their heads from their beds, who are fed through tubes, whose physical pain would be deemed unbearable if a ‘healthy’ person would experience it just for an hour.
Yet this disease is constantly mischaracterised in the press, is dismissed by much of the medical establishment, and is granted virtually no funding to help to find treatments that might take the edge off, or help to promote recovery. Please read Emily’s Appeal today, if there is one thing you can do – I am a firm believer that change will only come for this community if we start from acts of passive compassion. Just try to understand it first…be ‘aware’, pray if you can.
If you can then do more, please do so; yet if you ask many patients, the first thing they’d say is that they would just appreciate some awareness. Not because they’re martyrs – they are already living with such a plight – but because they are systematically victimised and betrayed by the institutions that are supposed to protect them, and all those that are vulnerable.
One dark winter’s night, I was in bed, sitting perfectly erect, completely oblivious to my surroundings, my eyes fixated on the pages of the book I was reading – a book that was to change my life.
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 Designto sum this position up – what assumptions you make about my beliefs without questioning them, or by consigning them to meremythshouldn’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 driverof 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.
I know some argue that I am involved in a sort of hero-worship of Noam Chomsky, however I must admit that I thoroughly liked the following piece, which he wrote some two weeks ago, after having visited Gaza at the end of October – as far as I can tell, this is the most accurate picture available on the web (that is, from someone who is sympathetic toward the plight of our Palestinian brothers).
“Even a single night in jail is enough to give a taste of what it means to be under the total control of some external force. And it hardly takes more than a day in Gaza to begin to appreciate what it must be like to try to survive in the world’s largest open-air prison, where a million and a half people, in the most densely populated area of the world, are constantly subject to random and often savage terror and arbitrary punishment, with no purpose other than to humiliate and degrade, and with the further goal of ensuring that Palestinian hopes for a decent future will be crushed and that the overwhelming global support for a diplomatic settlement that will grant these rights will be nullified….” (for the full text visit Chomsky.info)
Though this is an old quote, so far as I know, I think that this is perhaps the best description of what it means to be a Palestinian living in occupied lands (again, from the same piece):
The purposeful humiliation is also not new, though it constantly takes new forms. Thirty years ago political leaders, including some of the most noted hawks, submitted to Prime Minister Begin a shocking and detailed account of how settlers regularly abuse Palestinians in the most depraved manner and with total impunity. The prominent military-political analyst Yoram Peri wrote with disgust that the army’s task is not to defend the state, but “to demolish the rights of innocent people just because they are Araboushim (“niggers,” “kikes”) living in territories that God promised to us.”
Again, it looks like there will be a bloodbath in the besieged Gaza – PressTV reports that the death toll now stands at least 100 dead – for an army with precision-guided missiles, it’s incredible as to how often they manage to shoot at civilian complexes, killing several members of the same family…certainly, I don’t condone Gazan firing at arbitrary targets, but for what is supposed to be the most ‘efficient’ (and they use this term with pride) military machine in the world, it’s astounding as to how often the Israelis manage to miss their targets completely, or use outrageous force at that.
But of course…they will always carry out an ‘independent internal investigation’. As the Persian saying goes, I think there is something very true about “the arrogance of power“.
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.
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.
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):
Heightened Senses 