Heightened Senses

Hello. I'm Imraan. This is my attempt at a productive silence.
May 6, 2012

Silent Screams

‘Silent Screams’

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.”)

2 Comments
April 2, 2012

All they’re asking is for a little respect…

(As originally published in The Student Journals – www.studentjournals.co.uk)

Is there really any space in our political climate, and in our discourse, for those who vote in ways that don’t fuel the engine of the two-party system? Voting for the Liberal Democrats doesn’t count; for a vote for them seems to bolster the position of the Conservatives, partly because that’s just one vote less for the Labour Party.

The recent victory of the Respect MP George Galloway in Bradford appears to be a rather damning indictment, not just of the Labour candidate who stood, but to the Government of today. Most commentators seem to at least acknowledge that fact (to varying degrees), but I’m not convinced that this will be taken seriously enough.

Now, before I proceed, I must admit that I am a supporter of the Respect Party, so I cannot be entirely objective about the outcome of the election this past week. Though I’m perhaps too cynical about British politics today, I cannot hide my joy at Mr Galloway’s victory. If you’d like to imagine me smiling whilst writing this, it might help my cause!

That said, I am hopeful that the massive media interest surrounding Respect’s victory in Bradford (and hopefully,  success in the upcoming local elections), will bring back to the public discourse the various issues that seem to have, at least temporarily, given them a second wind.

But competing for this space in the discourse will be tough, as already various explanations have been offered for Respect’s victory. The two which are the most interesting to me, and which seem to overlap, are, firstly, that Mr Galloway won by courting the Muslim vote, and secondly, that Respect won because they are a single-issue party campaigned on that platform.

While these factors may have been important in securing Mr Galloway’s resounding victory (and had it not been such a landslide we might otherwise have played down their importance), the logic behind these suggestions is rather worrying.

Firstly, had Respect courted the Muslim vote – leaving aside the troubling assumption that all Muslims vote the same way – does it delegitimise Mr Galloway’s Parliamentary mandate? Mehdi Hasan, for whom I have much respect, does make the important point  here that Muslim voices are uncomfortably silent on issues relating to domestic policy, although I think he underestimates the bustling civil society in places such as Bradford, Birmingham and elsewhere.

Even if it was indeed true that the bulk of Mr Galloway’s votes came from one particular demographic, is it not insulting to essentially dismiss this surprise victory by claiming that it was ‘those Muslims’ who voted him in? I celebrate the large Muslim turnout at this election, unlike those who prefer to take Galloway’s victory as evidence of “the ugly alliance between the far left and Islamists.” As far as I remember, one Muslim’s vote was, at least in the past, equal to the vote of any other member of the British public. Some people seem to have forgotten this fact.

Moreover, if it was true that Galloway could have only won because of the so-called ‘Muslim vote’, should we not then ask why this is? One of the obvious conclusions might be the disillusionment ‘those Muslims’ feel with the major parties in Britain today, and their disastrous foreign, economic, and social policies – undoubtedly important factors in post-industrial cities like Bradford. Some may recognise this, but not realise its importance because of obscene suggestions about Muslims and how they vote.

But if we were to look at these people as more than Muslims, and view them as people who have similar concerns to anyone else in our communities, then perhaps it would be easier for people to process some of the reasons behind this result. They may actually recognize that as enfranchised members of the public, their legitimate grievances should not be dismissed, regardless of their religion or who they voted for to represent them. The discourse seems to strip away this community’s dignity – and their right to vote against the tide is undermined by such lazy stereotyping.

I don’t often play the race card, but I do think we need to whether we are enmeshed in institutional racism, both in the reporting of elections and discussions about the Muslim community (or indeed any other ‘minority’ group). Even I am constrained by the discourse (and see the contradiction), by recognising Muslims as a minority, implying that they have special needs or wants. What I mean to say is that in the democratic arena, we should see them as more than simply Muslims, and afford them the same democratic dignity as we would anyone else.

Secondly, if indeed Mr Galloway won because of the ‘single-issue’ that Respect promote i.e. their anti-war stance – people will make the essentialist argument that because our two ongoing conflicts pertain to the ‘Islamic world’, Muslims will certainly vote against them. Does this give our Government or the Opposition the mandate to whitewash that issue and its implications? If indeed the anti-war sentiment is important to the people of Bradford West, and by extension other cities, then it ought to be addressed. It is not fair to those voters to undermine their democratic right to vote for a policy, not a party, by implying that their collective interests compromised by mandating a particular policy.

The way this argument is framed allows the powers that be to conveniently dismiss the anti-war sentiment which contributed to the election of the Respect candidate. The prevailing discourse is that the election of parties matters more than candidates. Here, our democracy fails critically, because it gives rise to a lazy, non–reflexive political discourse which simply perpetuates policies that the citizenry might oppose, but can do nothing about because they are often duped into voting for party over policy. But maybe, just maybe, not anymore.

March 26, 2012

Update – a bit random and scattered

Hello cyberspace!
I hope that this finds you as well as possibe today. Alas, I’ve had perhaps ten random views on my blog, don’t know who they’re from or if they’re following. However, it is somewhat cathartic to get my voice out, out there.

The world is rapidly changing, the war in/with Iran looks moree likely, Europe is slowly crumbling (especially with Greece), and Britain is declining. I, on the other hand, have made small improvements – what’s interesting is that I feel rather guilty of this – my lifes quality is improving a little but everything around me collappses meanwhile. Sometimes I wonder, what’s the point of ever getting better if I can’t enjoy the world – not that I forget that I have a civic and moral duty (I preference the latter over the former) to try to contribute to the world in some positive way, and I hope I am someday able to do so. I’m reading a little more, again, thankfully, tough the brainfog is really heavy at times.

Friends of mine bought me a Kindle as a get-well present, and I’m reading a bit of ‘Infinite Jest’ by David Foster Wallace, which is excruciating but thankfully with the Kindle, it looks a bit easier to keep track of what I’m reading and not forget where I am, as well as it being easier on the eyes.
I’m loving my subscription to the London Review of Books, which has some really interesting insights; however the articles are rather long and I have to take them very slowly. I’ve subscribed to the New Statesman, which might help me keep track of the news; I’m hoping it isn’t wasted on me.

In terms of ME – I had a month where I woke up every day paralysed from the neck down, thankfully for short periods, this seems to have subsided somewhat. I hope that it doesn’t come back and I can make steadier improvements. My body seems to be rallying a bit, in that I feel stronger inside though my activity levels are still pretty low. I’ve made some friends and am using texts and BBM to keep in touch – though I’m more severely affected than most of them, I seem to have more stamina and don’t relapse as easily.  A blessing, I guess; but I keep overdoinng it so I have no idea when I’ll start to make larger improvements.

Okay, that’s enough for the night; I hope that whoever finds this is having a pleasant day.

January 4, 2012

Awareness Videos

I don’t think that more than a couple of people read this; though I will still post this.

http://www.youtube.com/watch?v=LvweCk44WHs – This is a heartbreaking video of a sufferer named Laural (dreamsatstake.blogspot.com) – who is very severely effected (I, on the other hand, ‘only’ have Severe ME – which really puts things in perspective as to how awful things can become.

Anyhow, please blog, tweet, facebook etc. this video. If you happen to be on YouTube – look up user’s chlaychlaychlay, and DAiiSYXO for their ME awareness videos, which are really informative.

So much love to you all, and a happy new year!

October 24, 2011

Being

Today I am just grateful to be here. I type these words knowing that no-one ‘cept me would probably read them; however they need to be said. Perhaps cosmic forces have aligned themselves such, perhaps they have made me sappier than usual, but it needs to be said that life is a gift. Not the sort of gift that you return in exchange for store-credit, but it is a currency in its own right.

Spiritually, I have felt empty of late, numbed by self-pity, and have felt that my soul has been neglected. But today I realise how important my life actually is – even if I don’t take it seriously, I get the sense that life’s meaning is pervasive. Today I feel it penetrate the core of my being. I am here. Perhaps it is because the forces external to me have helped me find some value in my life, or perhaps these are forces of my own creation, manifested by some fancy of my consciousness. I mean, why today? Why is it this day that relinquished the despair, when everything else in my life remained constant? Is it mere alignment, or is it the yearning, the calling of something much deeper than that entity which brings about my desires, thoughts and actions?

Could I capture the sentiments of this day; harness the beauty I’ve seen today for tomorrow, when surely it would evade me? Or should I expect tomorrow to be a better day, and insodoing, live that very essence? Who knows – tomorrow will be a journey of rediscovery in its own right.

October 15, 2011

Sounds like…

I was a little bored after my rest this afternoon, and couldn’t sleep due to the ringing in my ears (a wonderful part of ME), so I thought I’d try to write a poem on it. It’s a bit muddled, but it was a fun way to pass some time.Perhaps my last attempt at poetry, but it was rather cathartic.

Tinnitus

A ring
A ringing
Essentially the same
Yet in one you indulge
The other indulges you.

Could a sound smell so sweet
As a buzzing bee to a rose
A singing bird at dawn
A water dripping
Drenching a thirsty land?

When the sound throbs
Pulsating – a desperate heart
Screaming and wailing
Yearning sweet release
Yet the cry goes un-heard.

A clock ticking
Forever through emptiness
A night unrelenting
The void and the silence
Thundering through eternity.

Then dawn breaks
The humming and the harmony
A world animated
Its music thriving
Yet seems a mere screech

Could I smell the ‘crack’ of dawn
Would the scent of birdsong
And the aroma of rainfall
Awaken me – soothe my crying spirit
Over the ever-ringing wail of my heart?

October 13, 2011

A Touch of Class…

Picture this:

Though it was muted, you could clearly tell that the news was playing on the telly, which sat atop the counter. It had that typical news format, a scrolling headlines’ bar, the time ticking in the corner, and two people talking whilst staring unblinkingly and directly into the cameras. It’s a generic format, but it works. We still believe what they say, because that is all they say, and because that demeanour is the marker of the bastion of Truth. Truth, untainted by emotion, unblinking…unblinkered. In all our years of cultural and intellectual evolution, we have learned to separate the truth out from people. And the recording of the Truth is a recording of history. A peoples’ history cowers in the face of pure, truthful, unadulterated, unblinking. History. ”

Meanwhile, zooming into the kitchen and squealing excitedly, Tommy says, “look mummy, I’m a race-car driver.” He emits a high-pitched screeching sound, indicating the brakes were on, and that he has decided to stop.

“And what a handsome one you are, sweetheart,” Helen replies, gently stroking his sandy locks. “It’s time for your tea. You must be really hungry. What would you like?”

“Stringed-cheese, mummy, and some squash please,” he says cheekily, knowing full-well that that wasn’t a suitable teatime snack. The grin on his face was unmistakable – he knew he was playing to her emotions. On this day, however, mummy couldn’t resist. Perhaps she was a bit distracted by the glaring television, but you could also see the love radiating from her warm-grey eyes.

She reaches into the vegetable crisper where the stringed-cheese was hidden, and grabs the bottle of pre-prepared squash. Excitedly, and knowing that he’s about to have a treat, Tommy starts to spin about on the spot, whilst his mother lays out the paper plates and cups.

The phone rings abruptly. In a rush to answer it, she leaves Tommy alone in the kitchen, still spinning and squealing. Suddenly, something flickering catches his eye. He stares at it intently. A minute passes. He stands immensely still.

Upon returning to the kitchen, Helen knows that something is off. A mother has this intuition, you know. She calls out his name, but he doesn’t answer; his eyes are fixed to the screen.

She turns her face towards it, and immediately forms a look of horror. How could she have let her son watch such horrors? No six-year-old needs to be exposed to that. She turns of the telly, and then turns to her son, whose ordinarily grinning disposition is now masked by utter bewilderment, and sadness too.

“Tommy…your tea is ready. How about some squash?” she asks, hoping that the moment passes.

“Mummy…” he starts, still looking at the blank telly. He fidgets a bit, and continues, “why were those children crying?”

Not knowing as to whether to tell him the truth or not, or whether to ignore him completely and distract him with the cheese, she hesitatingly opens her mouth…”Sweetheart, those are children in Africa…it’s a place far away…”

“But why were they crying mummy? Where are their clothes?” he continues. Knowing that she can’t avoid the subject now, but still unsure of how to convey the truth to him, she says. “My love, they are very poor, and are very sad ‘cos they haven’t got any food.”

“But where are their mummies and daddies?”

“ Idon’t think they have any mummies or daddies.” He frowns; the creases on his face mark both sadness and horror; a silver tear slowly emerges in the corner of his eye, rolls down and bounces off his  rosy left cheek.

“But mummy…” he continues, “who gives them their tea then?”

“No one, my darling.”

“Mummy…” he starts again. “Will you go away like those kids’ mummies? I promise I’ll be good. I won’t ask for string-cheese  ever, ever again…I’ll…I’ll share my toys with the new baby…I’ll give you lots cuddles…I’ll…I’ll…”

Not being able to bear this, nor contain her emotions, she embraces her son, and says “My love, I will never leave you. Nothing you can do will make me go away.”

“But their mummies and daddies went away…how come? Were they bad?”

Knowing she’ll have to tell him the truth, yet so despairing at the amount of grief caused by this exposure, she whispers, “Those children are orphans. They are poor, my darling. Lots of people in the world don’t have parents, or food, or clothes, or money like we do.”

Thinking for a second…fidgeting with his hair again…Tommy turns to his mother and suggests, “can we help them, mummy? Can we give them some cheese and squash so they can have their tea? We could give them clothes too…maybe daddy would send them money. He has lots and lots and lots.”

Welling up with pride, and pure unadulterated joy at her son’s altruism, she whispers again, “No my love. They can’t be helped.”

“…But why not?”

“Because if we gave them money, they’d just steal it from each other. They wouldn’t buy food.”

“But what if we gave them food?”

Again, trying to explain the fundamentals to her son, she says, “my love, if they had food to eat they wouldn’t share it with each other like we do. If we helped them, then they’d become lazy. If you help these people they would go out and steal things. That’s how poor people are, my love. They’re not like us.”

Firstly, before I go into anything else; children are indeed starving in the Horn of Africa; the present crisis may leave more than 750,000 people dead – we must help them.

Now that aside, I’m trying to make a point here.. Just some weeks ago hundreds of thousands of us were willing to deny some probably very-poor people their benefits, after the riots. Terms like “benefit-scum” were banded about. Why, because we have come to see people getting help from the state as the ‘other’. As less than human. As scum.

It’s all fair and well that one could be horrified at Helen for not permitting her son to make a donation to African orphans – because they are the true needy. But as is so easily done, we have forgotten the less-well-off in our own backyard (excuse the Americanism).

But when people commit crimes in our own cities, we immediately assume they did so because they were poor, and because the state helps them. This discourse horrifies me. We have come to equate those who need genuine help as undeserving of it, if they were to break the law. It isn’t as if rich people could ever commit crimes; no, they take the moral high ground because they’re not on benefits. It’s the benefit-scum whose parents are bad, it appears. And as a result of their bad parenting and because they are apparently poor, we think it is right to deny them their source of income. Growing up in relative affluence, we have somehow equated being poor as having a disease. It is this disease of poverty – symptoms of which include bad parenting (as witnessed by the Government’s policy on improving families), ‘gangsta’ culture, and having to take state help- which lead people to commit such crimes.

Where does moral responsibility start? Where does it end? Who decides which particular class of person deserves to suffer the consequences of his irresponsibility? Where do we draw the line between the person and the institution? What do we do to the oil companies who contribute so much to the damage to the environment, those who truly lay waste to our global home? We complain a bit, restructure their boards of directors perhaps, make them pay a small fine, and then we let them get on with business as usual. Should we perhaps forcefully take the stock-options from the shareholders. What about governments who participate in the destruction of whole countries elsewhere through unjust wars? Should we perhaps take away the benefits of the returning soldiers? Or perhaps deny their widows their pension? There are many such examples we could cite.

Perhaps the crux of it is – where did loving, caring  and productive individuals in society decide that it was morally justifiable to deprive a person, and by extention, his family possibly, of their means of income? What logical sense does it make to potentially condemn  someone to the diesease of poverty which wrought such havoc on society further? That was, of course, rheetorical.

Recently theBritish Government thought ofdepriving parents of truanting children ther ‘benefits’. Isn’t the irony obvoius that by monetarily incentivising a parent to ensure their child goes to school, that child becomes a mere commodity for the parents’ livelihood (even if thebest of intentions were meant for the child in the first place).

The list goes on. Next week Parliament will again debate the issue of the rioters and their benefits. Like others, I will be waiting eagerly to see the outcome on the Truth channel…I mean the news.

October 13, 2011

Trapped

An unfinished-extract from my diary from a couple of weeks ago.(edited a little bit):

 

“Whilst I was resting today, though I cannot remember if it was early this morning or when resting in the afternoon…I had a little time to think from my bed. Anyhow, it was to do with whether ME is a physical or mental illness. Some months ago, one of the BBC radio stations broadcast a programme where an ME-researcher said that she received death-threats for suggesting that ME might be a mental condition, or have a mental-health aspect to it…in fact, it was because she was researching whether there was a psychological aspect to it. It was revealed that this was the case for manyother reasearchers.

 

Whatever this might reveal (or let’s be diplomatic, indicate) about the prejudices of the “institution” against ME-sufferers -or whether these incidences give a bad name to the ME-afflicted – my thoughts were more focussed on what the state of understanding of mental-health illnesses is.

 

Though I do not in the slightest believe ME to be rooted in psychological origins, or at the very least that psychology or psychiatry cannot explain why ME occurs in patients (convincingly anyhow), what if ME was proven to be a psychiatric condition? What would be so bad about it? What difference would it make to our suffering?

 

Of course- the sometimes latent but often explicit agenda of medical researchers and medical professionals could discourage patients from coming forward to receive the help, or it could result in patients receiving types of treatment and care not suitable to their very-delicate conditions; but if that agenda didn’t exist…

 

Is it a taboo still to have a mental illness?  Though wwhen we hear that someone has a psychiatric condition (I’m using mental-health/psychiatric condition interchangeably), we mighht imagine them in a white gown, strapped to a trolly in a padded roomm at the end of a ward in a sanitarium; we know that mental-health issues are fairly widespread and do not necessarily warrant such imagery – their manifestations may be subtle, but to the patient, they are still very real.

 

I think that part of the ‘fear’ of having a psychiatric condition might cause the afflicted to believe that their suffering is subjecctive, and therefore less real! And it doesn’t help that medically there are few, if any biomarkers for their conditions; this is compounded further by the prejudice of the medical professionals we so rely on to help us manage our condition, and offer at least support if not sympathy, as it is rarely gotten from others.”

 

But if you were in the state where you really, truly believed your body to be malfunctioning and others suggested that it was all by virtue of the tricks your brain played upon you, you might start to doubt all your thoughts, all your motivations, and the very fact that you were sick. If it was in fact the case that your mind, ego, brain  – whatever you would wish to call it – was at the root of your illness, and that the only filter you had to view the world was through this mind and you were a slave to your consciousness, doesn’t that warrant even more support from those who were paid to care for you? But it goes beyond this. We are trapped in bodies that are unrelentingly uncooperative – the extent to which they malfunction are magnanimous (just ask an ME patient who gets temporarily paralysed or experiences seizures or blackouts randomly) – what care couldbe provided to patients who suffer so. Part of the fear must be that if a psychiatric cause was found, then ME patients would be subjected to conventional therapies. So far as I can tell, I’m not sure how you can think yourself out of paralysis or stop a seizure midway by changing the way you think about it.

 

Isn’t it a testament to our mental and inner-strength that we live our lives in acceptance of this grim reality?

 

September 2, 2011

Endurance

What options are left,  when you have no other options…

 

(Excuse all the tense confusion please!)

I’ve been thinking a lot about this recently; that is, the ability of people to endure.  Life is hard for everyone – my suffering is no more important than yours. But growing up in a country where excess is the marker of a life-fulfilled and a life with potential, I have grown quite accustomed to thinking that there is always something else I can do, if plan A didn’t work out.

People often say, “I had no choice in the matter.” But didn’t they? If you don’t have a choice, you still chose to do, or not do, what ever you did, or didn’t. Hardly any activity that I can think of doesn’t result in pain of death if you were to not do that particular thing. And unless you were rendered physically incapable of making a choice (i.e. you died or were incapacitated), you did what you thought you had to do.

But growing up in a world of relative affluence, choices have always been open to me – what to eat, what to study, where to shop, how to communicate, where to sleep at night etc.

Every choice you make in life leads to your next choice, and then that to the next choice, and that to the next, and so forth. Logical? Yes, but it needs to be said. But what do you do when whatever choice you make leads to the same outcome? What happens when your ability to choose is no longer a concern, and is overshadowed by the actual results? When the outcome is the same every time, you might feel that the choice doesn’t actually matter.

The ability to make a conscious choice is probably the most powerful gift granted to human-beings. Without it, we are left eternally bound by whatever mechanisms or structures that control us. Without it, we are dead. Yet when you have M.E, regardless of what you do, the outcome is still utter exhaustion every time. And when the pleasure or utility of any activity is obscured by that very fact, does that mean our choices are less important than others’? Where people can make choices on our behalf because we are percieved as being stuck in the vortex of tiredness.

I hope to God that is not the case. Like countless other ME sufferers (and other unwell people), our ability to make choices is constrained by the physical limitations upon our bodies; and when it come sto having to decide to exert yourself by eating a small meal to nourish yourself, despite knowing you will have to sleep it off afterwards, or will suffer terribly for doing so, it does make you think about the power of choices. I eat, as I choose to stay alive. I sleep, in order to alleviate my suffering, still-knowing I will not be energised upon waking. Yet these are things that I choose to do.

Yet people like to think they can speak for us, and tell us what we are going through, or accuse us of purposely being unwell, suggesting it is all in our mind(s), or that we act sick as a mechanism of avoidance. As if to say we chose this life, and that the subsequent choices we make daily to pass the time are less valuable than the choices of those who are well and more productive.

Where one is ‘forced’ (literally) to be subjected to this abuse from his medical professionals, his employers, his family members, and perhaps most importantly, his own friends – and after every such occasion, to still have to suffer the same ill-health. Telling someone they are not sick will not make them better. But people still act this way, because they are oblivious to the fact that their choices are not always a function of the results. That they can function the way they do because the excesses of choice are granted to them.

Passing the day in bed is very difficult, particularly if you think that you have no choice but to be there, or if you think that every choice you make is irrelevant. For me, it is especially more difficult given that I live in a world where there were infinite choices available to me once, or where I can see the fruits of the choices of others.

It is easier to focus on the small choices you make, even if the ramifications of which are already predetermined, and realise that the evidence that you are still alive, lies in those choices. Though you can’t always choose what to eat as you can’t prepare your food or can’t physically eat, or you can’t choose where to sleep as you might be bed-bound, you can still make a conscious choice every day to endure. Realising that you have made that choice is indeed a very powerful feeling – it gives you something which others have continually sapped from you – your value as a sentient being – your dignity.