How Our Parish Dealt With AIDS
By Protodeacon Cyprian Hutcheon, M.D.
FACING THE REALITY OF AIDS
“No one can responsibly deal with [the AIDS] crisis by denial, and that is what we are tempted to do. We are not immune as some would imagine. As one person is reported to have said, I could not have AIDS since I am an Orthodox Christian.”’ (Fr. Basil Zion: “The Orthodox Church and the AIDS Crisis,” St. Vladimir’s Theological Quarterly, 36:152-8, 1992).
“It can’t happen to us!” Well, it did. Three times since the mid-80’s, our Orthodox Christian mission community of the “Sign of the Theotokos” [“the Sign”] in Montreal, Canada has been challenged by the need to minister to persons with AIDS. The three in question have now fallen asleep in the Lord. All were active members of our parish, known to most of us and loved by many. What did we hope to accomplish on their behalf? Did we succeed? What could we have done differently? These and other questions come flooding to mind as I try to recollect our halting efforts at reaching out to fellow Christians in their hour of greatest need. Hopefully, by hearing about some of our experiences, other communities may be encouraged to face the very real challenges which the “AIDS epidemic” poses for Christians living in today’s world.
At the outset, we must try to answer honestly a very important and paradoxical question: why does this particular fatal illness create so many conflicts and difficulties for Orthodox Christians whose life and worship are centered around the great Mystery of the infinitely compassionate (“philanthropic”) God who became one of us and who suffered and died and rose again “for our salvation?” I believe that Fr. Basil Zion’s article, quoted earlier, highlights this sensitive matter well and I would like to quote him more extensively:
“Everything about the controversy surrounding AIDS is shocking to the mind of Orthodox Christians. It is not only a disease which is lethal in its progression, but it is a disease in which 70% of those infected in the US are by homosexual contact and another 20% by intravenous drug us. .. There are concerns about receiving Holy Communion by the common spoon, fears of infection, fears of contamination. But the most profound dismay would lie in the presence of the disease within the ranks of the holy church of God. Those who succumb to it are often thrust out into outer darkness, no longer recognized as sons (and daughters) of the people of God. . . because of deep suspicion that they were sinners who cloaked their sins behind a pretense of piety.” (op. cit., p. 152).
A potent “cocktail” brewed from near-equal portions of shock, fear, ignorance and moral superiority threatens to dull our consciences to such a degree that normally caring church-people become insensitive and judgmental as they “pass by on the other side” along the road to Jericho (Luke 10). Through our parish’s particular experiences with AIDS-afflicted persons, I have become convinced that no amount of well-meaning individual “helpfulness” can ultimately transfigure the hell of AIDS for its suffers in our midst - unless or until our parish communities are willing to confront the issues raised by Fr. Zion in a spirit of love and openness, utilizing the abundant theological, spiritual and medical resources available within our Church.
That being said, I would like to talk about some of the important issues that were raised as we tried to help one or other of our parishioners with AIDS.
“WHAT CAN WE DO TO HELP?”
Though no parish meetings were convoked, in each of the three cases as word of illness spread through the congregation, there was a near-universal desire to be of assistance in some way. This is a normal human reaction to someone in need. The only problem is that in a large city, in a society where most people are working full-time, it may be impractical to imagine that parish volunteers can look after all the daily needs of someone who is seriously ill and who lives outside one’s immediate household. Activities such as bathing, changing beds, meal preparation, laundry and house-cleaning must be attended to on a regular oasis by reliable people. Though one family may be free to prepare a hot meal for Tuesday lunch and someone else for Thursday supper, there are still another 19 meals a week to be attended to!
I believe that our failure to come to grips with this reality led to many needless frustrations on everyone’s part and to delays in patients’ getting home help that was urgently needed. I am certain that there is nothing “un-Christian” about acknowledging that “village-style” neighborliness will not work in many of today’s urban settings - unless it is extremely well organized and co-ordinated by a person or persons who are free to fill the inevitable gaps produced by someone else’s oversight.
Where we were able to help was by ensuring that patients were connected appropriately to existing services. This was particularly the case because a number of our parishioners are members of one or another of the helping professions and were knowledgeable about the health and social services networks. Even though Canada has “free” universal health care, and community services are relatively abundant, there was still a need (as we discovered) to be vigilant that patients were receiving available services to which they were entitled.
MAINTAINING PARTICIPATION IN THE PARISH’S LITURGICAL LIFE
As our parishioners with AIDS became sicker, friends and volunteers from within the parish came forward to offer them transportation to church on Sundays and feast days when they felt well enough to attend. These offers were consistently refused by one patient who seemed intent on minimizing all contacts with the parish after the nature of his illness became known. I suspect this was primarily an expression of his fear of being rejected by the community - a situation which might have been obviated if both he and the parish had been more open in facing the many implications of his having AIDS.
In another case, church attendance with transportation and physical assistance was maintained for as long as medical circumstances permitted. Thereafter, arrangements were made for our friend to receive Holy Communion at home. Fortunately, we have two deacons at “the Sign” and one or another of us was able to visit the patient’s home virtually every Sunday until his death. We tried to take small groups of 4-5 parishioners with us to maintain some sense of community life and to pray together with our brother as he prepared to receive the precious Body and Blood of the Lord. In all instances, regular remembrance in personal prayer and at Liturgy of all “brothers and sisters who are ill” must be the mainstay of any truly Orthodox attempt to minister to those with terminal diseases.
COMBATING LONELINESS AND ISOLATION
Many persons afflicted with AIDS have long personal histories of failed, unloving relationships with family and friends going back to early childhood. Therefore, it is not surprising that the final days and weeks of life for AIDS victims are often permeated by powerful and very real feelings of isolation and abandonment. One way to combat this is to encourage regular visits at home or in hospital by both pastor and parishioners. We found, however, that despite the obvious loneliness of our patients, we had to be solicitous of their personal wishes and preferences. Factors such as fatigue (a usual accompaniment of serious diseases), feelings of shame or embarrassment, differences in personality between people or just the simple desire to be left alone for a few hours often led to situations where a patient would feel overwhelmed one day and abandoned the next. It became clear that sensitivity was required on all sides with the forgiving recognition that rude rejection and warm acceptance might be experienced by the same visitor on different occasions or by two people visiting at different times on the same day.
Other ways of keeping in touch that proved useful included: occasional outings or group visits for special occasions such as a birthday, telephone calls, short personal notes through the mail and cards from “the whole parish” on feast days (preferably signed by as many people as possible rather than by the secretary of the parish council!).
SPECIAL CONSIDERATIONS FOR EFFECTIVE MINISTRY TO PARISHIONERS WITH AIDS
In addition to these more obvious ministries, I think that over time we learned three important lessons about diakonia for AIDS victims.
(1) People with AIDS are often estranged from their immediate families. Locating and maintaining contact with family members and perhaps facilitating reconciliation and reunion are all activities for which Christians should feel a special vocation.
(2) We as Christians have no need to compete with patients’ old friends from outside the Church, except in trying to show as much love as possible to those in need. Some pretty “weird” people may show up at the bedsides of AIDS patients and we may be tempted to pass judgment on the “propriety” of past relationships between them and the sick person. Yet, through some special word or gesture at a particular moment, it may well be one of these “outsiders” and not one of us who makes Christ most present for someone who is dying.
(3) Those people within a parish who feel called to minister to persons with AIDS should go ahead and exercise their ministry without waiting for everyone else to change their attitudes and “jump onto the band-wagon.” In all three cases at “the Sign,” a few people were way ahead of the rest of us in recognizing what needed to be done. At times, they became despondent because the parish, as a whole, was not moving fast enough to render help where it was needed. I suspect they felt that many of us didn’t care and perhaps they were right. I respect and honor their impatience and I thank God for it. Had they given up in despair, waiting until everyone else was ready for some well orchestrated common action, nothing would ever have happened and our attempts at ministry would have been even more feeble than they were.
These are just a few thoughts and ideas which came to mind as I tried to reflect on our parish’s experience in dealing with AIDS. I know there are so many things we might nave done differently and better. I am also aware that ours is one particular experience which may not be directly relevant to the life of other parish communities in our Church, though I think that some of the lessons we learned as we groped for direction could profitably be applied in ministering to other groups of disadvantaged, suffering people including those with major physical disabilities, the terminally ill and people with serious psychiatric disorders.
For those who would like to read more about AIDS from a perspective compatible with Orthodox Christianity, I would suggest the following:
(1) The excellent article by Fr. Basil Zion cited earlier.
(2) Part Five on “AIDS” in Healing: Orthodox Christian Perspectives in Medicine, Psychology and Law, edited by John T. Chirban. Holy Cross Orthodox Press, Brookline, Massachusetts, 1991.
(3) Materials included in the information packet entitled The Bishop’s Task Force on AIDS, put out by the Greek Orthodox Diocese of Chicago, 40 East Burton Place, Chicago, Illinois 60610. Telephone: (312) 337-4130. FAX: (312) 337-9391. The materials in this packet are not all of equal value, but included are: materials from the “AIDS Pastoral Care Network” (an interfaith organization in Chicago), useful factual information, a bibliography and some pastoral care items - a position paper, a prayer, a booklet of scripture readings and a suggested sermon.
Questions For Discussion:
1. Has a discussion of a Christian response to AIDS and those ill from it been a part of any educational program in your parish? If not, how might it be incorporated?
2. Are there any persons suffering from AIDS among your parish community? If so, how has your parish responded, as a whole? individually?