AIDS

Brother Angelo of the Society of St Francis writes about the healing power of love and the way in which compassion can speak louder than words to people with AIDS.


This article was first published in the Spring 1997 number of Chrism. The author's profile below is from the same date

Brother Angelo is the Provincial Secretary for the Society of St Francis. For ten years (from1985 to 1995) he ministered to people with AIDS, spending much of that time in San Francisco. This ministry, which is so much a part of the work of the Anglican Franciscan brothers and sisters, is very much in the spirit of St Francis, the secret of whose ministry always lay in his ability to become one with those to whom he ministered.

© Guild of St Raphael

The Language of Feeling

In 1987, in a speech to the General Synod, the then Archbishop of Canterbury, Robert Runcie said: 'A characteristic symptom of a plague, throughout history, is a witch-hunt; I believe we have seen something of this with the AIDS "plague". I believe it is based on bad theology.'

When looking at the AIDS situation (or crisis if you prefer it) from the point of view of theology, you must first define what you mean by that word. I find the definition of Fr. Xavier Harris OFM, which he gave at the Franciscan School of Theology in Berkeley, California in 1987. the most helpful. He defined 'theology' as 'the offering of ourselves to meet God and discern His will in the world around us'.

From this understanding we shall recognise that theology can never remain static, or defined 'once and for all'. When asking questions like 'What is God telling us and showing us through AIDS?', we have to remind ourselves of two things: First, that God makes the sunrise on the evil as well as the good, and sends rain on the just and the unjust; and second, the very simple truth that our God does not govern his universe by our norms of moral recompense. It is a human trait to blame victims of suffering as though they are somehow deserving of their misfortune. We glibly say that the victim of rape enticed the rapist; that the person who got mugged shouldn't have carried money, or was just careless; that the cancer patient didn't eat right, or shouldn't have smoked; and so on.

Why do we do this? Perhaps to make ourselves feel secure; to reassure ourselves that God will treat us well (or ought to) because we keep the rules. The game we play, or attempt to play is the tired old game of personal merit; but if you read the Gospels carefully you will find that the differences in human merit, if they exist at all, are so slight in Jesus' eyes as to be of no use at ail in judging the world.

You cannot make things go right by being good; more than that, you cannot make things go right by repenting - in the sense that though repentance may reconcile us to God and to each other by getting the relationship right, we cannot put things right by the same process because we can very rarely, if ever, undo what has been done.

What each of us must ask in the face ofthe AIDS crisis, that is ask of ourselves is: In the light of the fact that any righteousness within myself is entirely due to the sacrifice of Christ and the grace of God at work within me; and if I am to be true to the Gospel in terms of imitating end extending the life and teachings of Jesus; and in view of the Christian belief in the oneness of all humanity 'in Christ'; What is God calling me to do in sustaining others through this developing situation? And by 'others' I mean not only the people with AIDS but also the partners, relatives, friends - and, if a priest, - members of the Body of Christ in their fear and confusion.

The response to such questioning, if we are considering it in the light of the Gospel of Christ, is that it is a vital function of the Church to show compassion to every single person whom our God places 'in our way', and that by doing so we not only obey Christ's command that we should love one another as he has loved us; but also reveal the reality that inasmuch as we do it for any of the least of his brethren, we do it for himself. The Christian Gospel lays before us a clear imperative of compassion and caring; it is a divine imperative, not an optional extra!

When Jesus Christ 'embraced' the Cross of Calvary, and when Francis of Assisi 'embraced' a leper on the roadside in Umbria. both those 'embraces' released into the world a new power through which others might find greater wholeness. We, in our way and lime must 'embrace' the person with AIDS as we are embraced by our Lord - unconditionally. Our compassion must be truly that, an entering into this particular human situation in the way that the Word of God entered into ours as a baby at Bethlehem - totally. We must recover the simple but difficult gift of being present to one another because in the most painful moments, in the greatest suffering, and in the darkness of fearful uncertainty, what matters most is that someone is 'with us'.

This 'language of feeling' is transpersonal and transcending, in that it can take us beyond the words used, or make the use of words unnecessary.. In this way I suppose one could say it is 'transcontinental' as well!

There is no one of us who does not know what it is like to feel sadness, despair, joy, anger, loneliness, sexual desire. This is possibly the one totally common bond in all of the human condition - every human being feels.

Some-one who is diagnosed as having a life-threatening illness feels a great deal more intensely. Because of what has happened to them their life awareness is drastically changed.

The life awareness of the person who comes alongside the person thus gets changed also, as one learns to share (or at least understand) the feelings of abandonment, of aloneness, of 'what do I do now with my life?' - the concept of being rooted, of belonging, being ripped away and replaced by the question within one's self, "where do I even fit in the world now?'.

That comes up frequently, and when it does, it comes up powerfully, volcanically, and can be very disruptive to any sort of calm or serenity. What do we do with that, as caregivers? If we can fully recognise the language of feelings, the power of emotions, and the power of just 'being there' for another human being - then we not only provide support, but also perhaps movement - to take them beyond feelings.

The caregiver - particularly the Christian caregiver - can contribute a great deal to the welfare of the person with AIDS simply by the process of helping friends, lovers, family of the patient to recognise the power of their loving. By surrounding the person with AIDS with love we have a healing force that knows no limitations, and which as Christians we should never underestimate.

By the simple process of crying together over the pain of our losses, screaming together in rage over the unfairness of it all. sharing simple things (from a fantastic sunset to a smile of welcome), we surround the patient with an awareness of being loved.

Together they can learn to share all this, and themselves, totally! And if we have the will, and the courage as caregivers, we become a part of that process.

By not holding back we, with the rest, become vulnerable. By being vulnerable we can allow ourselves to be healed as well as to heal, to be cared for as well as to care, to be loved as well as to love.

By reaching out to another person, to touch another life with compassion and love, we can work miracles!

Now you may think that kind of language out of place when we are thinking about something as unromantic and seemingly unspiritual as AIDS - but it is the language of 'feeling' - the first language of the caregiver.

One might anticipate that working with the terminally ill under such circumstances as AIDS would be a burden, and very depressing. Too often the attempt to minister to them is done as though we have something to 'give' them. rather than entering into and participating with them in their own experience. People who actually do this most often use the term 'privilege' to describe what they experience, and 'gift' to describe what they receive.

Whether we are working with adult men and women, children, families, the 'worried well', drug abusers or minority populations, we need to learn from them how they may best be served. Only by coming close to them, by entering into their lives, can we realistically expect them to enter into ours. When this happens it becomes all the more possible to bring a message of hope and healing which is more than simply words, and which God proclaims through the enfleshment of service and love. Not only shall we then enter more fully into the Incarnation (that is, Christ present in suffering humanity), but we may begin to understand more fully what it means to be the inclusive Body of Christ in the world. We might also recognise, and admit, that we have all - both Church and individuals - been less than God centred in our attitudes; and by God's grace start again to be and do what we can in his name.

Caregivers, whoever they may be, also frequently discover that the difficulty of caring for people dying so young, and dying in large numbers, gives rise to troubling spiritual questions for the caregivers themselves.

The spiritual problems faced by friends, lovers, and family of the person with AIDS - after death and during bereavement - are also unique, because of the young ages of the patients, the manner of death, and that, very often the families only team of the their lifestyle (whatever that may have been) at the time of dealing with the death. This raises all manner of emotions - guilt - fear - anger - embarrassment - even relief. It also poses such questions as, How could this be? Why him or her? Why not me? and so on. All these require very specific attitudes on the part of the caregiver, so as to avoid further stress being added to what is already an agonising situation for many of those involved. Creating a 'safe' environment is an integral part of any patient care - as any professional caregiver in hospital or hospice situations would know - and in order to do this one must consider what might prove to be a barrier or barriers.

The person with AIDS is usually (however well disguised) fearful and a bit defensive; apprehensive about their reception and looking for any sign of condemnation or rejection. These feelings could greatly inhibit the quality of whatever length of life may lie ahead of them. The caregiver can. therefore, either break down or reinforce whatever apprehension the person with AIDS may have, and change his or her whole sense of fear into one of well-being and security. Right from the first contact we must avoid loaded descriptions like 'terminal' or 'fatal disease'. Il is realistic to recognise - and hopefully get the person with AIDS to recognise - that they do indeed live in a life-threatening situation. But that is a different matter. For the person with AIDS it doesn't matter that large numbers of reported cases have already died; they look to that small percentage who have had AIDS for three or more years without the remorseless and startlingly rapid deterioration which has affected others.

For the person who has AIDS it does not matter so much that large numbers of reported cases have died, globally. They look to those who are 'living' with the virus, those who are deep into the research for new drugs or new combinations of drugs, and those who through love, friendship, comradeship and care are helping them to 'live'; albeit for some, living one day at a time. These are the major encouragements to many with the virus who are very much alive; and live in the hope of continuing life - not imminent death.

Such people are at the frontier between the known and the unknown; the longer they live the further back they push the frontier itself. No-one knows the long term prognosis of any of the current treatments, or new ones yet to be implemented, though we see enough signs to believe and hope that there are possibilities ahead which ten years ago were not even on the horizon. Only time will tell really, and time is what many folk with AIDS do not have, which only serves to emphasize the need for a deep and genuine compassion in the rest of us.

Those of us who seek to 'serve Christ' within the situation of AIDS can create a special care-giving relationship if first we stress spirituality and not religious practice, and second we cultivate that spirituality through the 'language of feeling. By ‘spirituality' I am not referring to highly developed mystical practises, but to personal questions about such profound issues as one's lasting worth and ultimate concern. What is lasting and ultimate can be discerned in the patient's deepest emotions, rather than in the creeds and liturgies he or she may have left behind.

At the height of his ministry Jesus asks his disciples: ^Who do you say that I am?' (Mark 8.29). It is the question which is heard anew in the life of every person who is suffering, oppressed or outcast. The question is asked every time we pass them by or bring our presuppositions to bear upon their life and situation; each time we venture to define another person's value and identity in terms of our own canons of acceptability. Not only in his own ministry to the marginalized but also in his identification with them, Christ has given them the unique power to stand in his place and ask of us. his disciples, that fundamental question: 'Who do you say that ] am?' It can be answered to some extent without imposing theism, much less a denominational confession, by lovingly guiding the person on a journey inward that leads ultimately to a point beyond the self. The caregiver's role in identifying that point as being divine - insofar as the patient is able or willing to do so - is crucial. It is at that point that the Spirit can transform despair into hope, trust into relationship, and relationship (human and divine) into gift; and the situation is created in which human goodness and divine' grace may become fully active.

There is no fear or difficulty that compassion cannot help to dispel or overcome. There is no door that sufficient compassion will not ultimately open. There is no heart, however hardened or embittered by past hurts, that the compassion of Jesus, extended through ourselves, cannot help to heal.

© Guild of St Raphael