Endurance, an update.

by Imraan

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.