The Burden We Can Be
WHEN sickness first breaks out in a household, it not only brings the normal life of the one attacked to a standstill, but keeps that of the other members more or less in suspense. At first the attention and care of the whole household are focused on the sufferer, whose life perhaps is in danger, and he or she instinctively turns to the affection of loved ones for help, sympathy, and support. Then the sickness which one had imagined would soon be conquered — or conquer! — persists, drags itself on endlessly, asserts its incurability. One was prepared for a rough and rapid passage-at-arms, and one finds oneself compelled to sustain a monotonous siege, of which the end is not in sight; and the paths of the invalid and those around, parallel at first, diverge more and more.
These helpers, then, who in the beginning rivaled each other in zeal, and did not know how to express the pity and love with which they overflowed, we soon find to be deficient, and note their growing weariness and indifference as our illness prolongs itself indefinitely. The sufferer, who had previously felt that she was understood, supported, and surrounded with care, has now to go into an icy zone, where she will feel isolated though living in the midst of others. It is one of the most painful parts of the pilgrimage of illness, where at each step the sufferer sees more clearly the trench which is being dug and goes on widening between herself and the healthy people round her — and, sad to say, those she loves most.
Can we without injustice or ingratitude make the assertion that sometimes we have to endure special suffering at the hands of the non-sufferer, the one who helps us in so many ways, whom we call to our assistance at all hours of the day or night, the rescuer without whom many of us would perish like abandoned nurslings?
I have hesitated between painful alternatives concerning this distressing avowal. At one time I despaired about it in secret, at another I did my utmost to hide it from myself, for I could not make up my mind to reproach those round me in any way. Finally, I got to understand that a cruel situation cannot be put right unless it is probed to the bottom, and that it could only be a good thing for those round me and for myself to dig down to the very roots of the reasons of the suffering caused by those who loved me and whom I loved.
My conviction is that one of the reasons which prevent people round us getting a real understanding of our illness is that they so soon get accustomed to the new situation.
For us, on the other hand, the trial of suffering gets more and more difficult to bear from the mere fact of its being prolonged. (Although the crushing weight of it never ceases, yet not a day passes when the hardship of my fate does not come upon me with renewed shock.) The healthy people round us get accustomed to seeing us always weak, and in pain, and confined. The renewed outbreaks of our complaint, the hours when our lives are in danger, our ever-narrowing limitations, our times of improvement which get shorter and shorter, no longer awake in them that astonished dismay which formerly we took as a proof of their affection. Their blunted senses no longer leave them aghast when confronted with our suffering, and they gradually become blind to nearly all the details of a life in a sickroom.
But it is a mistake to take this as a sure sign of want of sympathy or blunted affection. It is the result of an almost inevitable evolution, which we can see taking place in other directions as well. Everything which loses the glamour conferred by novelty and strangeness loses also its value and importance in man’s eyes.
Only certain rare affections, especially those of mothers, husbands and wives, daughters, and angelic Sisters of Charity, do not get hardened to the suffering of those they love, and identify themselves more and more with them with a love that goes on growing in understanding and strength, however long the trial. Only to such loving hearts as these does the illness of the loved one never become too painful or heavy a burden; it is a trial which the invalid and the loving friend or relation share with a reciprocal love, tender and passionate. But not everyone has the privilege of participating in such a love as this.
One can easily imagine that the invalid often finds it difficult to establish well-balanced relations with the healthy in the midst of all the misunderstandings which he feels going on round him. If he complains, he will soon succeed in annoying them, however legitimate his complaints may be in his tragic condition, and he will be quickly branded as a hypochondriac, accused of exaggerating his ills and of being absorbed in the contemplation of them. If he perseveres bravely with his treatment; if, in order to obtain a physical fitness most necessary from his people’s point of view perhaps, he submits wholeheartedly and without a murmur to his medical adviser’s prescriptions and most stringent regulations, he will be the invalid who is always watching himself, and looking out for opportunities to coddle.
If it happens that, discouraged by the failure of various forms of treatment and medical advice which proposes now one thing, now the opposite, and by the realization that his doctor has not much hope of a cure, an invalid becomes skeptical about it himself, and if he drops certain prescriptions, although he is aware that his doctor had not much faith in them, then he will be called unreasonable, a patient who will do nothing to get well, one that nothing can be done for. If he scorns to complain, and goes so far as never to mention his physical sufferings which nothing can alleviate, or to speak of an interior life which he feels he must live in solitude, then it will be found that he is not so ill or unfortunate after all, and those round him will speedily neglect the attentions due his illness and needs.
Healthy people can be very slow in understanding certain things concerning an invalid, things both great and small. How many, without the slightest ill will, are slow and find it difficult to adapt themselves to our restricted movements and the few positions we are able to take up! Sometimes they never succeed in doing so. How little awkwardnesses and inconsistencies get piled up round the sickbed in the course of a single day!
It may be that, in spite of all our explanations and the evidence of the senses, articles we are likely to want are never arranged so that we can get hold of them fairly easily. Everything we really need, which should be just at hand, is sure to be placed out of reach of our arms, as inaccessible as if it were in the next room. Or perhaps questions are asked us from the farther end of the room, so that, tired as we are, we have to raise our voices to answer them; if we do not speak loud enough, the questioner repeats without coming any nearer. Or, again, someone may talk to us right at the head of the bed, so that we are obliged to answer without looking at the speaker, or else we have almost to dislocate our neck and get giddy in trying to see him; or, again, he may take up a position at the foot of the bed, and, while he is talking, lean on it as he would on the rail of a balcony, and give it little shakes and knocks most trying when transmitted to the patient.
The invalid will be sorely tried by certain types of healthy people found at every bedside.
There will be the one who makes it understood — without suspecting how naïve and a little ridiculous it appears — that he looks upon health, not as an inestimable privilege which he ought to be thanking God for every hour of his life, but as some kind of superiority due in a measure to himself and of which he has reason to be proud. As to sickness, he makes it very evident that in his eyes it is an inferiority only to be despised. The manner in which such a person makes sick people feel that he is humoring them is as insulting as a slap in the face. His ‘humorings’ have nothing in common with the consideration which affection inspires, and which goes straight to the heart of the patient.
There are others who do not exhibit quite so indelicately the scorn they feel for infirmity and physical weakness, but all they can rise to is a half-benevolent, half-disdainful condescension when confronted with the activities some invalids succeed in attaining to, or the spirituality they have gained.
Of the fact that these activities can surpass in quality and execution those of many busy lives they take no account. Whatever they say, whatever they do, they always seem to be trying to descend to the level of the invalid, without so much as suspecting that they may not have attained to that invalid’s height. ‘It helps him to pass the time’ is their reflection either spoken or unspoken when they come face to face with a crippled existence.
Then there are the sermonizers and givers of advice: ‘If I were you, I would do this or that. Why do you do such and such a thing?’ When they say, ‘Why do you stop in bed? Get up, and I will help you to get on your legs again,’ one feels that they are saying to themselves, though they dare not say it out loud: ‘Why have you made up your mind to be bedridden for the rest of your life?’
There are others the exact opposite. On one occasion, perhaps, they have happened to be present during a dangerous crisis. They do not disguise their pleasure any more than their astonishment at finding you alive after such an attack, and they give you to understand that they do not expect to have the same pleasure renewed if another one like it supervenes.
There are the persistent tellers of anecdotes who stupefy you with their insane chattering. They abound among nurses and people who have had a chronic invalid in their own households. They do not spare you a single detail of the terrible scenes of agony at which they have been present, or a single phase of the slow disintegrations of the body they have witnessed. They recount in detail the white lies and pious frauds they have fabricated to deceive the patient.
There are those who would have you understand that sickness is far more trying to the people round the patient than to the patient himself, and who, when telling you about an illness one of their own relations has had, describe with a superabundance of detail their own feelings, their own weariness, their own courage, their own sufferings, without a thought for those of the patient.
There are those who from morning till night, and even from night till morning, fritter away their health in useless occupations, and who are so little capable of realizing the actual state of things that they ask the invalid what he can ever find to do.
There are the restless people. They offer you any number of things for which you have no use. They show an excess of zeal, and bustle about when there is no occasion. They are noisy and obtrusive, yet absent when they could be of use; these are the people who wake you to ask if you are asleep.
Again there are the visitors who make a great show of their sympathy with sick people, but from every pore of whose person ooze ignorance and levity when they are faced with the terrible problems and great lessons of real suffering. There are those who boast that they know how to look after sick people, and that they ‘have a way’ with them, but one soon awakes to the fact that for them invalids are but dolls to amuse themselves with, or stubborn children to be domineered over in the manner of a Prussian corporal.
Finally there are those who tlo really understand. We are indeed privileged if we have friends among these! Their hearts intuitively foreshadow pain and foresee how a life of suffering may be turned into a work of energy and love. No discordant words fall from their lips. If we withhold from them the right of probing our calamity to the very depths, they will take care to treat it lightly, but we find nothing more touching than the respect which radiates from their silence. Even if we have known them but a brief hour, it is to them that our thoughts go out when we arc oppressed by loneliness, and when the lack of understanding round us is stifling as a sandstorm.
These words fell one day from the lips of a friend of mine who was visiting me in bed, where I had already been lying pinioned for three years: ‘An invalid is a burden weighing heavily on the lives of those round.’
I must admit that for the first moment I gasped as if I had been thrown unexpectedly into icy water. But I quickly recovered myself; the friend in question is neither cruel nor devoid of tact; I know that where she is concerned I am not divested of the power of giving, and our friendship is such that we can venture into the dangerous realms of truth. Moreover, in quite early days the painful truth had been borne in upon me, and was not to be disguised, that an invalid is, or in any case may be, a burden on those round him. We invalids are making a great mistake if we imagine that the mere fact of not being absolutely unbearable is sufficient to prevent us being burdens. Our illness can in itself be one, because of the attentions we need, and our dependence, and the grave crises for which, unfortunately, we cannot choose those hours of attack which would least upset the lives of those in our vicinity, and which thwart not only their pleasures and whims but also their most legitimate needs and urgent necessities, which interfere with their rest and their work, overtax their strength, and curtail their liberties.
We are burdens because we cannot lead a normal life, or even always endure people to live a normal life round us; burdens because of that inner discomfort which contact with our mutilated lives brings into the free enjoyment of a happy and normal life; burdens because of that kind of uneasiness tinged with remorse which conies to some healthy people when they brush up against a misfortune in which they vaguely feel there are some duties they ought to undertake, but which they have no desire to see take shape; burdens because of the troublesome problem we present, and the constant reminder we are of the tragic element in life, of the dark threatenings hanging over everyone; burdens because of the terror which the sight of pain in and danger to someone else inspires in others. I have seen this strange terror in persons to whom I am indifferent, as well as in those who have an affection for me. I have seen both dread the onset of a heart attack in their presence, as others dread the sight of blood; I have seen them, when an attack is on, thrown off their balance by this terror, and all their initiative and impulse to help paralyzed. I have come to the conclusion that this terror has nothing in common with the pain and grief one feels in seeing a friend suffer, but I allow that it is not incompatible with it.
I have been told that an invalid is not responsible for the repercussions on the lives of his relations which the needs of his illness may give rise to. That may be so. But is it a reason for our hearts to be content to do nothing about it?
To a certain degree it is in our power to lighten the burden or make it more heavy. How is it possible not to be animated with a strong desire to reduce it to a minimum? What are we to do or not to do in order to take the weight off the lives round us?
If we do not wish to become a crushing burden which will soon be found unbearable, we must root out all tendency to complain. How disagreeable contact with us must be when we air our grievances one after the other, and when we insatiably turn our misfortune over and over with everyone and view it in all its aspects! To expose one’s sickness of mind and body, as a beggar does his sores to get pity, is to renounce all claim to dignity of soul.
Ah, I know well that it is not always because we are cowards that we persist in talking about our trouble, in giving its details and consequences! No, it is often to prevent lack of understanding weaving its opaque veil between the healthy people round us and ourselves; it is to try and break a silence in which our hearts agonize as long as we have not learned that they can expand in it; it is in order not to be drawn away far from those whom we love, and not to do them the injury of living in their midst a life which they can no longer share. However it may be, let us know how to keep silence, for lamentation, even if there is true foundation for it, wears out the listener, so that he is not truly aware of the reality and extent of the calamity which gives rise to it.
It is above all at the beginning of an illness that one makes the mistake of thinking that if one’s trouble is described it will be made intelligible. Later one learns that, whether one speaks of it or not, it will still be impenetrable to the onlooker, and in any case will rarely be completely or lastingly grasped by another mind.
I shall not search now for what may be attributed to egoism or other feelings in this impossibility on the part of mankind to endure for long the complaints of misfortune, or even the mere coming into contact with it. I will confine myself to noting that most people cannot stand the sight of tears. The victim whom illness or misfortune has struck down will be quickly forsaken if he overburden those who come near him with his repinings.
In sickness, as in other trials, the soul oscillates between strength and feebleness; we should like to keep our courage steadfastly waxing — instead, it is unequal and fugitive. We know periods of exaltation when it ascends like water under pressure which sends a frothing plume to the sky; no sacrifice or effort seems too big for our impulse. Then our courage, which we thought would conquer everything, dies down and we feel as feeble as if the blood had gone out of our veins.
Let us try not to let the repercussions of these undertow movements of our bravery affect those round us. We may only allow our tears to fall on other hearts when by so doing we are giving a very special friend a precious token of affection and trust. In such a case it is not burdening someone else with our own trouble, but it is sharing it with one who has the right. We may have only one friend — or possibly not one at all — whom we would allow to see our tears. Outside the interchanges of true friendship it is a miserable and selfish business if we inflict the sight of our discouragement on all round us, make everyone a party to our anguished forebodings, and scatter the gloom and anxiety we carry within to the four winds of heaven.
During a long period in my illness I had suffered through feeling more acutely what separated me from my friends than what bound me to them, but all of a sudden I became aware of the possibility that they might experience the same kind of suffering with regard to myself. In fact, have not the friends who enjoy good health sometimes real reason for feeling or believing that we are out of touch with them? What can they think and undergo when the invalid himself makes any interchange of thought impossible, and so deprives them of the opportunity of offering anything they have to give which is of value, when they feel that he is in the grip of thoughts which he refuses to let them have the smallest share in?
It must be admitted that the rôle of the one who is well is a terribly uncomfortable if not a tragic one to play, and that, hampered by all the dilemmas with which he is confronted, he finds it hard to adopt the right attitude towards the patient.
Treatment of the physical kind does not generally raise very difficult problems, but it is otherwise where the life of the mind and soul is concerned. However well-meaning and intelligent the healthy person may be, it is in this direction that he runs the risk of being awkward, and being led to make serious mistakes in his anxiety to spare those who are ill.
It happens that ill and well put a strain upon themselves to spare each other, each wishing to hide from the other some painful truth which he thinks he has been the first to discover; each tries to make the other believe that his own trouble is less than one would think; each hopes that the other is ignorant of what he has knowledge of. Distressing mistakes and misunderstandings may then ensue.
There are some cases where the thought of death is bound to haunt the minds of those who love us, as well as ourselves, but it is generally tacitly understood that it shall never be spoken of, and that we shall each bear alone, they the fear of losing us, we the distress of leaving them. Our loved ones stop our mouths, as they would that of an unreasonable child; they would have us understand that the thought of death is a foolish figment of the imagination, which as far as we are concerned must not be tolerated for a moment. The disagreement between their words and our thoughts — and theirs — is so great that there is nothing to be done on both sides but cloak our anxiety in silence.
Sincerity, then, goes through severe tests in a sickroom. But the tragedies on account of truth which take place between patient and non-patient often extend beyond the confines of dangers and distresses to be dissimulated or owned up to; and the one who is well can be cruelly divided in his mind when he is caught between the fear of being the exciting cause of some emotion or state of exhaustion, which might bring on a sudden attack, and the desire to keep intimacy and trust free from even the shadow of deception. And, to take only one or two examples, it will be his personal suffering that he will try to hide, his own fatigue and difficulties that he will think it right to be silent about. At times, remarks or rebukes that he would like to utter — to explain some apparent deficiency on his own part — die away on his lips, because to speak them would be equivalent to planting an arrow in one of our open wounds.
Let us remember that healthy persons would feel very uncomfortable at having to ask us for anything, and that for them to have recourse to what we have to give we must be in a state to offer it with that kindly impulse and sincerity which alone make a gift acceptable. It is up to us to dismiss from our hearts and attitude all that prevents our room being a place which our friends love to come to. It is for us to find out how we can still be actively helpful; for us not to permit our friends to carry alone the slightest burden which our affection could perhaps lighten; for us, finally, to wish and allow others to forget — so long as our suffering body does not remind them of it too insistently — that we are ill.
Alas, however strong our desires and wishes may be in this respect, it will sometimes be difficult to remove all the barriers which our illness, or at least the life which it entails, erects between us and the healthy. In order that there should be no hindrance to true intimacy with those we love, nothing inherent in our invalid state must prevent them from speaking freely of themselves. Even if they make no use of their opportunities, they must feel that there is nothing to put a limit to them.
We must be very careful over this. Our attitude, the attitude of the invalid, creates difficulties in its turn. It may so happen that we imply by a smile, a silence, a comment, that the annoyances which our friends magnify into calamities would be looked upon by us, if we were the victims, as very trivial affairs. It may be, too, that we like to remind those who fail to recognize it that what they are suffering from is still compatible with a life which may be envied. I confess that we say these things sometimes with irony and impatience, but with many of us it is in order to encourage our interlocutor, and give him a juster insight into the true values of life. It is rarely that the latter asks himself if we must not have had some very cruel and revealing experience to make us think these things; it will generally be said that we envy those who are well and that we have become quite incapable of sympathizing with anybody else. Nothing is more untrue!
We invalids have not lost the faculty of being in touch with suffering of a different kind to our own, but we have acquired a sense of values which perhaps many healthy people lack, and which perhaps we were lacking in when we were free from the hindrances of ill health. Life and health have become in our eyes precious gifts not to be spoiled or thrown away. But is it not spoiling them to wish to raise little grievances and obstacles to the rank and dignity of the greatest trials God has reserved for man? We know that this sense of values is not to be acquired without having traveled a particular road; others can speak to us freely, even of that which seems of no importance by the side of our wrecked lives, humanly speaking. Contempt or indifference will be absent from heart and lips.
It is through their own pain that such invalids have learned pain; and the fact that the worst of their sufferings are not perhaps evident to every eye has taught them not to regard as less than theirs pain which is less apparent. They know too well that pain takes on every kind of form, every shade, every taste of bitterness. So when it is a question of giving them, in the midst of your own suffering, that which friendship has a right to claim, when you could be the Cyrenian who will help lift up their cross, come without hesitation or scruple to their bedside. If there is any discrepancy between their fate and yours, forget it, as they themselves forget it. Whether it is pain or joy you have to share with them, bring it all to them. Talk to them about anything you like, without letting yourself be cut short by the fear of accentuating too much the distance there may be between a normal life and theirs. Of this distance many have taken full measurement, and can look at it without a shudder. Speak, then, freely to them of the joyous life they will know no more, of the activities which they can never again take part in, of the freedom which has gone forever from them. Make them understand your difficulties and the questions which puzzle you, even if they are of the kind which illness absolves them from. Be assured that what they have learned in illness keeps such fervent sympathy alive in them that it enables them to live their difficult life and to take a share in that of others, out of the very fullness of their hearts. And if the thought of their pain comes into your mind, never let it lead you to keep silence about your own suffering, but let it make you feel that it is just the long trial of these invalids which has made them able to understand all.
And we in our turn must never forget the reasons which put us in a position to understand the healthy person much better than he can understand us in those things which specially concern us; he knows nothing about us as invalids; we know everything or nearly everything about him, because we were once healthy ourselves.
The man who has passed from unbelief to faith becomes for that reason incomprehensible to the unbeliever, but, because he has so passed, knows better than the ordinary believer everything which troubles the mind of the doubter. It is pretty much the same case with us and the healthy.
We have, too, to take into account that intellectual and spiritual lives are more accessible to us than to the healthy. Many of the things which appeal to them distract them; what demands the attention of the invalid collects his thoughts together, intensifies his powers of reflection, and makes him more spiritual. We must pay heed to the responsibility conferred upon us and the steps we are bound to take, from the mere fact of being aware of what the other is ignorant of, and of the road which has to be followed in order to know.
- In the March issue Madame Pastorelli told of the first painfully victorious adjustments of her long illness, ‘The Glorious Bondage.’ — EDITOR↩