The psychologist whom I visit from time-to-time suggested to me some months ago that I’m living a life of utter indignity. It’s not something that would naturally occur to me; I live in a time where all manner of proclivities, lifestyles, quirks, inclinations, and even illnesses, are, if not entirely embraced, well they are at least tolerated or given some modicum of acceptability. We live in an age of identity-politics, do we not. The greatest marker of being able to write your own narrative is to have your identity embraced by, well if not the entire populace, then at least by the ‘establishment.’ But that’s more a digression, I suppose, from my main point about indignity.
But recently, this cuts close to home. This isn’t unusual to me, in fact, many who suffer from chronic, tedious, gruelling illnesses who remain in the care of mere mortals will experience this. Some of them have told me.
After years of chronic illness, particularly with one that shows very little sign of letting-up in the medium-term, it’s only understandable that the patience of your carers wears thin. Oftentimes, we find ourselves subject to all kinds of abuse, psychologically, and sadly, in other cases, physically. It gets to a point where those that have cared for you suddenly make you think that they’re doing you a favour by doing it in the first place.
I suppose, it could be argued as such. That no-one actually owes us anything. And so, when my parents keep their adult son in their home, rent free, whilst he spends all of his money more or less on all variety of expensive alternative treatments which they reckon is wasteful, I suppose I could just turn inwards and shut-up about how hard things can be, sometimes. Yet, at other times, I cannot help but wonder why it is that the least of us is made to feel so small.
“We all have problems!” is one that I often hear. I’ve never denied it. Sometimes, I want to say, “well talk to me when you’re bedridden!” before I remember how cataclysmic my problems seemed in a past life.
I’ll give you a terribly small example. On the grand scale of things, this is not world-changing. Yet, after years of being made to feel this way, some things really get to you.
Today, I started panting from having to stand up from my wheelchair after dinner. I was already bent-over, exhausted, from the mere strain of sitting at the table. So, once wheeled back to my room (I try to walk the short distance on most days, today I did not have the energy), it wasn’t supposed to signify anything; I had not ‘intended’ anything by this panting, yet someone in our homestead took it as an opportunity to remind me of how negative I was being. I had said nothing, and had behaved as I would have was I on my own in the room, but apparently the moral they drew from the fact that I was panting had to so with, “well, some of your friends got better without needing [such and such need] from us; you need to change how you think.” Basically, stop demanding things. I hadn’t mentioned ‘such and such’ demand just at that moment, though had asked for it in the hour previous to it, though, I’m in no way able to enforce said demand. But apparently, it really got to them and they took this as the opportunity when I was most vulnerable to remind me that I was being unreasonable.
To which I said, “none of them got better from mere positive-thinking alone, though.”
“Well, maybe they did,” they said, before walking off leaving me standing, still panting, in agony, left to think that somehow it was my fault that I was feeling this tired.
And so ended the conversation. What do you do with such intransigence? I suppose, that’s what they were thinking of me, too, what with my clever retort.
“Imraan, every time we call, or you call us, you’re constantly groaning. Makes me want to take a knife…no, [they said, thinking that it was too violent an image] a hammer and clobber you on your head and tell you to be more…happy!” was another one I heard today.
I said, “but that’s not always the case, and it just happens to be the case when I call you I’m feeling at my worst [ergo, that’s why I’m calling you in the first place!]”
To which they said something about how I sound different with people outside of the house but am never a positive person to be around.
Violent imagery aside, for obviously they didn’t mean it [you can tell by how they said it], the point stands that somehow it is expected that if you’re in agony or struggling to speak, you ought not show it. I don’t tend to ‘show’ it for the sake of showing it, but it just tells you a bit about how such things are received .It upsets me that, if they’re telling the truth, that I need to work on being less negative in disposition and haven’t quite mastered how to be someone that doesn’t suck the oxygen out of a room; but equally, the point I was trying to make was entirely missed on them.
But the point remains, there comes a time when you live with such a condition that it has not only taken all of the fight out of you, but seems to have taken some of the humanity out of your family.
Maybe, again, this says something about the age in which we live, too. Look at it socio-politically – the most needy among as are somehow made to feel that they’re being done some huge favour by benefiting out of some of the welfare policies designed to promote some (increasingly feint) notion of social-justice or wealth-redistribution. Foreign migrants with legal rights are reduced to criminals among some sections of the media. Ethnic minorities with full citizenship are somehow treated as if they’re pariahs in their own country.
Or – parents who really ought to be cared for by their families are shipped off to ‘homes,’ whereupon they’re made to feel grateful for a weekly visit from their eldest child for an hour.
Or – somehow, we need to be grateful for the fact that the ‘City of London’ brings in masses of revenue that props up our beloved nation-state and the system that maintains the status-quo, whilst the poorest in our midst are robbed of their remaining dignity and well-needed resources because of the recession brought on largely by the ‘City’ and the system upon which it is predicated.
But back on point, and forgive me, for I don’t mean to come across as whining. I don’t mean to sing the Blues, as it were. But the larger question, of course, is how do we respond in such situations.
There are very few ways in which I can escape my current situation. Earlier on in the night, I found myself begging for death, with tears streaming down my face. Only so that I could be lifted from this indignity. In all honesty, I’m terrified of meeting my Maker. I have sins to atone for, yet. That said, I’ve never considered myself a terribly proud or haughty person – though perhaps some part of me wonders why then, I was so bothered by the fact that I felt and feel so utterly belittled by them?
It’s not the first time, nor will it be the last. But the question is, is when you are in such a position, how are you to actually respond to such situations?
Mum’s always taught me, “beggars can’t be choosers,” as a means to tell me not to expect ‘too’ much out of life, especially when I’m at the mercy of some other person. But the question, I suppose is, should I be made to feel that way in my own home?
Sometimes I think she might be right – I don’t exactly ‘expect’ that my family has to look after me, when there are other options, technically. At this moment, any other option seems a bit unfeasible; at a stretch, was I to give up my alternative treatments and claim independence from my family and be set up in a government-owned home by myself, with the state sending carers periodically to help me with my needs, I might be free of this. I suppose, then, if I really ‘wanted’ to, I could just move out, and not feel so hurt at my family, and they not resent me so much.
But on the topic of responding, there is a time when chronic illness will teach some of its loftiest lessons. I’m still to learn it, for if I had, I wouldn’t be so upset, or bothering to voice my thoughts. Humility. I think a major reason why I hurt so much is that I seem to think that I’m ‘worthy’ of being treated in a particular way by my own family, or that they really ought to give me the type of care that I would like from them. But of course, we’re dealing with other human beings. A microcosm of problems, worries, anxieties, hopes, dreams, aspirations, fears lives inside of someone else, too. Mine are obviously most apparent to me. As are theirs them. What gives me the gall to believe that they should set aside theirs and somehow avail themselves to mine?!
But that said, why can I not yet see past ‘me,’ yet? Is that ‘home’ where I think I ought not be a beggar in the first place even ‘mine,’ to begin with? How many people have I known who’ve been thrown out of their parents homes because their parents refused to accept their illness, for example? And they’ve perfectly, legally and apparently legitimately, had no recourse to any other alternatives. How many people do I know for whom the term ‘family’ bears little significance over some rudimentary formalities and a couple of legal obligations, aside from the odd social one.
Why should I or anyone expect that my own family treat me better than I would expect strangers to, in the first place? (I admit, largely, I am treated pretty-well here, and it’s not all doom-and-gloom; but the larger point remains!) What is so magnetic or electric about me that I would expect others to somehow feel duty-bound to my own cause?! Please don’t get me wrong, I don’t pretend to be a martyr. Considering I live in the United Kingdom in this century in a thoroughly middle-class part of the country, I really have nothing great about which to complain; on the whole, my life is pretty-darn comfortable.
But the point will stand, what is it in me that demands to be treated in a certain way, or wishes for better behaviour from certain people; surely, they can equally expect it from me!
To this I have no real answer; I can only keep remembering that if the only reason why I expect better treatment is by virtue of the fact that its because of ‘me,’ then I’ve completely missed the point. What is so special about ‘me’ that I can dare to deign to expect anything? No-one owes me anything. What have I done (and I mean, ontologically) to ‘deserve’ that my expectations be met? To ‘expect’ anything, in the first place?
This world is, by design intended to break our hearts. Not such that we could grieve over it, more so that we could truly realise the fact that we are in the first place not intended for it.