You will recall that I concluded my last blog with a question and in the interests of taking things further forward, it might be worthwhile reading that final paragraph again before moving on. My answer to such a question has to be in the form of an emphatic “No”. Cast your mind back or take a further look at my blog posted on March 29 2013, i.e. “Appearing to Cope; and its Dangers”. Few would disagree that in such an instance as that cited, Robin’s most positive response regarding his illness since diagnosis, was to telephone me in the manner in which he in fact did. By so doing, he ‘triggered’ an important and necessary process of divesting himself in such ways as he was able of his energy-sapping burden. This, you will recall, had grown relentlessly over time, assuming unbearable proportions over time, with all the additional residue of guilt and feelings of failure with which he subsequently had had to deal.
The woman on the ward (see blog previous to this) whose cry for help had been so abruptly and doubtless, unintentionally aborted by sister’s stern reproach, was (and went on to prove to be in her discussions with me) desperately seeking a way forward. Yet it had been described as negativity; remember? “I’ll not be having any of that negativity on my ward”. Yet, seen in its true perspective, it proved itself to be the only viable and fruitful means of moving forward; i.e. of being “positive” in the truest sense.
All our behaviour, especially in childhood and youth (where learning is at a premium) is “shaped” (to use a psychological term of yesteryear) in that certain behaviour patterns, e.g. sociability, conformity to certain norms and rules, to the law, to respect for authority etc. is “stamped in”; that is, reinforced and encouraged. By the same token, other socially and morally unacceptable patterns of behaviour are “stamped out” i.e. frowned upon and discouraged. Rewards and punishments may be – indeed are – judiciously employed to strengthen or weaken certain responses, as the case may be.
I have composed the previous paragraph of my blog in the manner in which I have, for a reason. It is because I do so want you to see how easily, confusion – which in turn (and piled on top of all the worry of existing illness-related concerns) is likely to yet further exacerbate feelings of frustration and of being trapped and hemmed in – can and does emerge In reality, Robin was no different to others. His life too had developed on the basis and the practices of “shaping”, referred to above. However, with the onset of illness, his behaviour and response patterns were now continually being reinforced in a manner and by a loved and respected influence, which one simply has to conclude, were to say the least, proving unhelpful. Indeed, it had reached the point of actually doing harm and causing mounting frustration and increased emotional pain. How often have I heard a member of healthcare staff saying to a patient of a hospital or hospice ward (and who – perhaps for the very first time – is beginning to release damned up emotions which need to be released) “Come on now Mr/Mrs..…don’t upset yourself?” And how often, I must confess, have I taken that to mean, “Please – whatever you do – don’t upset me?”
I sometimes think that I should prefer it were terms such as “positive” and “negative”, confined to the description of battery terminals and similar forms of unambiguous and unequivocal usage. There they do indeed have a very precise and well-understood meaning. However, human life – with its myriad and complexity of motives, ensuing responses and interpretations – is much too rich and sophisticated to accommodate such simplistic and, not infrequently, wholly inaccurate or irrelevant terms. In returning to a more realistic appraisal, we all very well know that they will by no means disappear from usage overnight, if ever. Thus it behoves us all – patients, family members, members of healthcare staff and members of the wider community – to use language accurately sensitively and, especially in matters of health and sickness, with due thought and regard for the whole person and his/her continuing welfare and well being.
One final word on the subject: although it is by no means as clear cut as we might wish (or as some would maintain), there does exist an important, if complex relationship between emotional state, i.e. how we are in our spirits so to speak; and how we cope in body and mind with both mild and more serious ill-health issues, such as we are concerned with in this correspondence. What does this mean in simple English? It means taking control wherever possible, of the day-to-day management of your life and affairs. (Simple but effective measures and strategies for self-support are (or are likely to be) described elsewhere in other blogs posted on this website. It also entails the acceptance on your part of undisputed facts and truths concerning your illness, all without jumping to unwarranted conclusions purely on the basis of hearsay or what you think might have happened/be-happening to you or to others. In matters such as this, one can do no better than accept the tried and tested guidance of those about you who are best qualified to advise. It also means using every shred of support and encouragement available to you, to the maximum extent.
The “bottom line” surely is to search out and use every worthwhile input, however major or seemingly insignificant, on both the good and the not-so-good days. Stay “connected” with every means of support and encouragement with which you are comfortable and that is available to you. Several well-designed reported studies now clearly suggest that interest and involvement in activities with others – be they family, community members, the church, social club or whatever – and perhaps above, all the quality and meaning of such affiliations and relationships, are key elements in coping with serious illness from the “inside-out”. This is good news indeed, since here is something to which we can surely all find “a handle”.