An Orthodox Christian Living With AIDS
By Irene Bilas
In January, 1996, Arlene Kallaur, Editor of the Resource Handbook for Lay Ministries, and Michael Anderson, OCA Director of Office of the Youth and Young Adults, met with Andrew Buleza, a member of Holy Resurrection Orthodox Cathedral in Wilkes Barre, PA along with his pastor, Vrev Joseph Martin. The designed purpose of the interview was to learn what could be done to assist other clergy and the youth of the Orthodox Church in educating themselves and helping others to understand HIV and AIDS. Andrew Buleza gave the following interview:
It is indeed overwhelming to me that we are having this conversation about HIV and AIDS with the Orthodox Church in America. The fact that I am being interviewed as A Person Living with AIDS in the Orthodox Church is even more incomprehensible to me.
Discovering that I Had AIDS
Question: When did you first learn that you were HIV+ and were diagnosed with AIDS?
Andrew: It was October of 1993. The flu was going around and many people were ill with pneumonia. My physician was treating me for a cold at the time. Due to my extensive work schedule, improper eating schedule and insufficient proper rest, we treated the fatigue and night sweats as “not out of the ordinary” he called it “over-work.”
After six weeks of doctoring, and no improvement with my health, I insisted on an HIV Test. Six years prior, I had requested the test from my physician, but he said I was not in a “high risk” group and the test was unnecessary. (The test is administered only after you prove “high risk” and know when you may have been exposed to the virus or may have been exposed through an unknown source. It is not done at regular intervals unless you engage in recreational sex or use IV drugs including steroids on a regular basis.)
The five weeks of night sweats, extreme fevers, loss of appetite and loss of weight came to a climax when a friend rushed me to the hospital emergency room at midnight. The convulsions and 105 degree temp were leading me to a coma.
In the morning, after the fever broke, they placed me on IV’s to hydrate me. A doctor visited to tell me the results of the HIV test I had taken two weeks prior. They were positive. Healthy individuals have between 1200 and 1500 T Helper Cells per milliliter of blood. My T-Cell count was 7.
The doctors could not diagnose what was wrong with me. HIV is not a cause for hospitalization or illness. They requested a bronchoscopy and biopsied part of my lung tissue.
Three days after the HIV news, a doctor informed me that my lungs were being attacked by a virus called P.C.P. (Pheumocystic Carinii Pneumonia). The infection was so bad, my T-Cell count was so low, that he diagnosed me with full blown AIDS and informed me that I had six months to live. The survival rate for P.C.P. was fatal five years ago. Now it is 35%. A second bout of P.C.P. is 75% fatal, a third bout“don’t get it!”
It was then determined by my doctors questioning me, that I had become infected in 1981 through unprotected recreational sex. In 1982, we in the United States were told of the existence of HIV and necessary measures needed to avoid contact.
Question: Who did you confide in?
Andrew: My mother and father passed on in 1985 and 1986. As an only child, there were no brothers or sisters, and only distant relatives, mostly elderly. Most of the people in my life knew little or nothing of HIV and AIDS, including myself. Out of sight, out of mind was the attitude we practiced.
When confronted with my HIV status, I was frightened. Frightened of rejection from my Church family, my fellow workers, my friends, my local community. I knew of the rejection that occurred to previously known HIV+ individuals, one who was a friend and also a member of the Cathedral. He died ten years ago in secrecy and alone.
People were fired when their HIV status was discovered. Friends stopped calling. Those diagnosed with AIDS were treated like lepers of Biblical times. This frightening realization was now happening to me in Wilkes Barre, PA. I was in trouble and there was no one to help me.
Discharged from the hospital with oxygen tanks and tubes, it was time to tell someone. My first choice was my bishop. Archbishop Herman was traveling to Wilkes Barre for a meeting, so I called and arranged a meeting with him. We met in private. I felt comfortable talking with him, as I was a seminarian and had spoken to him on numerous occasions.
This matter of HIV and AIDS was now in the Church and I felt it was vital he be the first to know and prepare to work with the situation. I was not the first case, nor would I be the last. He treated me with love and requested the monks at St. Tikhon’s Monastery begin praying for me. Prayer is so powerful.
Question: What was the reaction of your family, your friends when they did find out?
Andrew: What family that continued to live near me were elderly. Cousins lived out of town. They suspected something was wrong due to my extreme weight loss, but they did not know the diagnosis. And, they did not ask.
There was a need to discuss my HIV status and my AIDS diagnosis. I could barely handle it myself. A select number of “friends” were told through regular conversation, twenty people in all. Of those individuals, only four ever called, visited or showed any concern.
When I did have visitors, which did not occur until 1995, they refused food or drink when offered while visiting. They were afraid of contracting the virus.
It was obvious to me that people were ignorant of the facts of HIV/AIDS. The virus is not transmitted by causal contact, eating utensils, mosquitoes, hand shaking, kissing, washing clothes together, water fountains, sneezing or the Chalice.
People needed to learn the facts of HIV and AIDS. At that time, I was unaware how I could help. I was ignorant of the facts, too.
Question: How did your parish respond to your illness?
Andrew: As an active member of Holy Resurrection Cathedral, serving as a church trustee, choir member, and now acolyte supervisor, it became difficult to “hide” me.
My former pastor and I had a comfortable working relationship since 1970. He was my Spiritual Father. He learned of my diagnosis making his rounds at the hospital. At that time, he suggested that I not tell those in the congregation. It would cause great concern. The Archbishop knew and I felt it important to tell the deacons who were my personal friends.
My former pastor also suggested that I not venerate icons or venerate the cross. As a frequent communicant, I was administered the Eucharist after everyone left the church. For two years I followed his suggestions. However, I felt humiliated and turned away.
During the past two years, I do believe people have become more knowledgeable about HIV and AIDS. They have begun to understand that the virus is not transmitted by casual contact. There are those who still doubt, however, and thus there is a great deal of work to be done.
My Illness Becomes Public Knowledge
Question: How did your diagnosis become public knowledge?
Andrew: Most individuals who learn they are HIV+ never make public disclosure. They live in fear of losing their job, their housing, their families and their friends. This fear is based on ignorance. Ignorance causes hatred. Hatred causes silence. Silence equals Death!
Outreach to the community helped me cope with AIDS. Since the community was not going to come to me, it became clear to me that I needed to go into the community. As a certified teacher of secondary education in the State of Pennsylvania, I knew education could be a way for me to help people break their fear of coming in contact with People Living with AIDS (PWA’s).
In June of 1995, I learned that the American Red Cross offers a training course that gives certification as an HIV/AIDS Educational Instructor. On completing the course, I began presenting the facts of HIV and AIDS to civic organizations, high schools, youth camps and groups that I felt would benefit from my presentations and witnessing to AIDS.
In November of 1995, it was necessary for me to be hospitalized for four days with my second bout of P.C.P. My release from the hospital was November 30th.
For December 1st, WORLD AIDS DAY, a local private prep-school, had worked with me to arrange a performance of S.T.A.R. Theatre. The theatre troop is composed of young adults from various ethnic backgrounds and lifestyles presenting contemporary dialogues in a casual theatre setting. The group is based at Mt Sinai Hospital in New York City.
As part of the program, I was to introduce the group and welcome the audience of 500 young people. Unable to walk with oxygen and feeling very weak, it was impossible for me to be present at the event. Besides, my weight was down, I looked like a skeleton. I looked like Death!
Instead of my presence, I wrote a letter and had my AIDS “Buddy”, Marie Madero, deliver it to the young people present at the assembly. Also in attendance were the local press, TV, and other media reporters.
Reading the local newspaper the next morning, I found, to my surprise, that my story had made the headlines. “AIDS Victim Teaches Life And Death To Area Students.” People all over town learned of my diagnosis. They responded with overwhelming love and care.
Members of my parish sent cards, called to make appointments to visit and sent food daily. They expressed their love (some in writing), showed me their genuine concern and listened when I spoke.
While I was hospitalized this second time, (November 1995), my new pastor visited me on a daily basis in the hospital. On my release, Father Joseph came to my home for prayers with Holy Communion and with food for the day. He did that each Feast Day and each Sunday until I could return to the Cathedral. When I finally was physically able to attend services in January of 1996, most people were very kind and responsive. They offered prayers to Almighty GOD for my good health, lit candles in church for me, approached me with the kiss of peace, spoke to me in church and told me that I’d be O.K. In particular, the elderly women showed great love and concern. My parish came through for me and so did my new pastor.
Question: How has your illness affected your daily life?
Andrew: My life changed. All things in my life were put into perspective immediately. Irrelevant matters were no longer of any importance. Nothing was more important than my health and the salvation of my soul.
AIDS became a gift to me! The tremendous amounts of medication required me to eat regularly. Peaceful rest was important. It’s important for healthy individuals, too. Over the past two years, I’ve learned to “listen” to my body. It really tells me when I need to eat, rest, relax.
The church offers a cycle of prayer and fasting that is built-in to assist us in feeding our body and soul. Most Orthodox Christians are unaware of this cycle. Many do not adhere to Orthodox practices due to the westernization of America. It is indeed a challenge to be Orthodox in a western culture.
Suggestions for Offering Help
Question: What suggestion do you have to offer to those who would want to help someone with AIDS or any terminal illness?
Andrew: The best suggestion I could offer to any person or caregiver is to express your love and concern to the person directly. Take time to visit the person. See for yourself what their needs are. Then, act accordingly. You know best your time schedule, your abilities, your finances. The evening meal is the most difficult meal to accomplish, especially during the winter months. Suggestion: Don’t say, “Call me if you need anything.” Get a verbal or written list of needs. Help the person compile one!
There is a brochure available that could help, entitled When Someone You Know Has AIDS. Call: Pennsylvania Substance Abuse and Health Information Center (SAHIC) 1-800-582-7746, address: 652 W. 17th St., Erie, PA 16502. They offer fifteen brochures free of charge. Ask for their catalog. The recommendations are simple and cost effective.
Question: You mentioned an AIDS “Buddy” earlier in our conversation. What is a “Buddy”? What does he or she do?
Andrew: An AIDS “Buddy” is a person who befriends a person living with AIDS. They spend whatever time they have available with that person. It’s sort of a “til death do us part” situation.
The “Buddy” may do errands, help cook meals, shop for groceries, drive to doctor appointments, but above all he/she listens and is just physically present so that the person living with AIDS is not left alone.
AIDS “Buddies” are arranged through local AIDS service organizations. If there are no “Buddy” programs in your area, perhaps you could begin a group in the church. The “Buddy” program could be used as an outreach in the Orthodox Church for the elderly as well as the sick.
AIDS “Buddies” are in great demand, as there are not enough volunteers for those who need them. I feel very fortunate to have a “Buddy”. My “Buddy”, Marie, has been a great source of comfort and help to me. .
My Illness and My Faith
Question: How has being HIV+ affected your faith?
Andrew: Though my beliefs and practices in Orthodoxy have been well grounded, during the challenging years of my adolescence and later in my young adult years, the questioning of my faith was very real. Receiving sufficient and complete answers to my many questions was difficult.
The Church has always been there. The clergy have always been there. Even after we all pass on, the Church will thrive and continue to be here. However, for me, the opportunity for discussion and inquiry about Orthodoxy was not present or available when I required answers. So, I enrolled in St. Tikhon’s Seminary to seek the answers to some of my questions.
With my illness, I now have more time for prayer and reflection. There is now the opportunity to do things like answer your questions, to teach and help others understand this disease we have come to call AIDS. It is important for your readers to understand and feel that they can be of help to someone with a terminal illness.
My AIDS diagnosis has been a gift to me. It has permitted me to seek the truth of Orthodoxy. Almighty GOD has blessed me to live the remainder of my life in an Orthodox manner; the life He has bestowed upon me.
Question: How has your faith affected your illness?
Andrew: Since my AIDs diagnosis in December 1993, my heart has come to tell me that the Church has provided me with the hope to continue living. Initially, my medical doctors gave me six months to live. It was suggested that I write my last will and testament, and do whatever I really wanted to do that I had not yet accomplished.
And so, I listened to my doctors, all four of them. By the end of the ninth month, September ‘94, my birthday, I was still alive and very healthy. A bit upset that I did not die as predicted, it was time to reflect on the situation.
In prayer, it was revealed to me to continue to put my trust in GOD. This revelation occurred on a Sunday during Divine Liturgy. My senses have become acute, although I’ve always been keenly aware of minute details. However, words now seem to hold more weight than ever before. It was during the singing of the Second Antiphon, Psalm 145, that I redirected my trust:
...I will sing praises to my God while I have being. Put not your trust in princes, in sons of men, in whom there is no salvation. When his breath departs, he returns to his earth, on that day his plans perish.
Put your trust in God. Commune with Him daily. Sing praises to God. He will direct your path. All that is required of us is to listen, be watchful, follow His directive and love one another. It really is very simple.
Educating the Young People of Our Church
Question: One of the reasons for this interview was that you were concerned about educating the youth of our Church on this issue. What would you like to say?
Andrew: As an HIV/AIDS instructor with the Red Cross, my presentations have directed me to local community groups and area high schools. As I talked to audiences of diverse faiths and beliefs, I found it important to me to think of those young people who are of our Orthodox Faith.
Within the past ten years, I am the second member of our parish to be diagnosed with AIDS, the first person having died in 1986. Very little was accomplished within the parish community in those ten years to educate the parishioners. To my knowledge, there has been no organized attempt by our Church to provide the Faithful with education about HIV/AIDS.
In the contemporary western world in which the Orthodox Church in America finds itself, it is now time to broach this subject with our young people. The Church has always preached abstinence, or rather postponement of sexual relations until marriage. Now is the time to speak up about this.
Almighty God does work at times in “strange and mysterious ways.” He sent His “Only begotten Son” to us to teach us and be the example. His primary mission was to teach us to love God and love one another (Mt 22). Love balanced with wisdom will do more good and accomplish more tasks than without them.
The faithful of the Church look to our hierarchs, pastors and church leaders for direction and example. In the pandemic of HIV/AIDS, it is important that the Church leadership understand and show by example how to “love one another” in the face of all calamity so that in all we do, we “do all to the Glory of God” (2 Cor 10:31).
Working and living with people who have AIDS is no different than Jesus spending time with the lepers. The only difference is twenty centuries in between. Love for one another is the same then as it is now. As Orthodox Christians we need to practice this lesson.
By making information available to Michael Anderson in his work with the youth of the Orthodox Church in America and by giving this interview for the Resource Handbook for Lay Ministries, I hope and pray that in some small way, I have helped the Orthodox Church in America and its future. Life is a very precious gift. The Orthodox family throughout the world has a great need to be educated about HIV, the virus that causes the disease we have come to call AIDS.
Discussion about HIV and AIDS can be professionally handled by inviting an American Red Cross Chapter in the U.S. or Canada to come in and give a presentation on HIV/AIDS prevention. Some chapters offer the program free of charge, others charge a small fee. Such a presentation could save lives in your parish… even the lives of your children.