Heightened Senses

It’s just me musing today. I’m back from a week in hospital, which was rather long. Am mostly stuck in bed now recouperating. I have a lovely zimmer frame to use temporarily – I asked my sister what to name it, and without batting an eyelid, she said ‘Arthur-itis’! Made me chuckle no end. I suspect that she’s appropriated it from somewhere else without realising it; however it was hysterical.

My point to day is about how to ‘know’ something that is far ‘bigger’ than our comprehension permits. Hypothetically  (and if it had solid borders), what if we had the ability to walk toward the largest star in the observable universe, arguably VY Canis Majoris? – A start that might be 2,000 times as big as our sun.

What if it wasn’t so increadibly hot and bright and we were say, able to walk toward it. What would happen to a human being if he was to stand at the edge of it’s majesty and look up at it? My mind shudders just to think of it – I couldn’t imagine merely walking up toward something (assuming that I’d even notice it was there as it’s size would probably envelop my entire horizon  – what if it ‘knew’ that it was there all along and knew the general direction in which to walk – though funny enough my mind seems to argue that in fact, every plane of existence and space around me, in front of, behind, under, would be engulfed by the star – counter-intuitive as it seems) of that natue , a perceptibly infinite object, as that; yet what is it we do every day to the Creator of that star, of our enitre universe. No humility. We stand at the door of true Majesty and we fail to notice that He is there, from within ourselves. I might argue that knowledge is knowing that the star is massive, but truly Knowing is how we spiritually respond to it.

Yet we are constantly invited, the door is left open yet we stand outside, arrogantly turned away from it because the Master of the House is apparently beneath our dignity to recognise. We might seethe in hatred because we recognise that the house is too beautiful for our lower selves to Love. We know in which direction to walk, yet how many of us actually bother? We are so pathetic.

Here I am, so blindly, so ignorantly, comparing knowing the Lord with a star so miniscule in His comparison that I’m bordering blasphemy. Perhaps the only way to begin to recognise the Almighty in this sense is in the way of the ‘old’ – don’t worship the star, of course not, but recognise its grandeur. Then ponder over why it is that the Lord of the Universe doesn’t seem to warrant a greater reaction, more humility, from us.

‘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.”)

Here’s a piece that I wrote last year a couple of months after I became severely affected with ME, following my trip to Canada (which was, ironically, for treatment – it’s attached to the end of this brief post.

Last night I had a long think about what it was that caused me to get out of bed. And I don’t mean that in a motivational sense so much as something that would cause me to get up and suffer considerabely for it, all the time realising that it wasn’t ‘worth’ it. People get out of bed in the morning for all sorts of reasons, I recall for me it was always school. Always the prospect of learning something new, or submitting an assignment for something freshly learned. But say, had I gotten out of bed out of sheer hunger, even that would be a motivating factor. I wouldn’t fall ill for sitting up to eat a light breakfast, nor would I endure hours of pain and dis-ease thereafter.

But last night, as I was having a rare moment of introspection, I realised that there isn’t much that seems to be ‘worth’ the suffering I and others go through, because the necessariy life choices that follow having a meal or a wash, or say exercise, aren’t available to  us, at least at this time. Except, for what I recall writing, that which keeps me alive.

So, hunger, yes, might drag me out of bed, but it’s also the consequences of hunger that would send me back. Funny how life works, right? I don’t say this in a ‘pity me’ kind of way; far from it. But when you’re sleeping, or more often, trying to sleep so desperately between meal,s and spending what little lucid or conscious time you have available to you trying to figure out why you’re in that state in the first place, and if there’s anything that you could do differently to make your life ‘worth’ living, to find what would cause the sensation of being wrenched from your bed, or from reclining, to lessen, (unless it’s an ontological given), it  does apply a certain psychological pressure. You’re left thinking, all the time, ‘what next?’.

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.

My friend Rosa introduced me to this link, made for 2012 by some fellow ME-Warriors.

It is rather scary as to how much this rings true, that I’ve heard practically every one of these things said to me. But I guess if you can laugh about a traumatic situation, you’re at least well on your way to denial.

“If there is faith in the future, then there is power in the present.”

Best wishes,

Imraan