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Living with AIDS: A Personal Journey

by Terry Boyd

Note: This story was published originally as HIV/AIDS Focus Paper #4 in March 1989. Terry Boyd died of AIDS-related complications on April 17, 1990.

I vividly recall a night in December of January about a year ago. It was 6:00 P.M., very cold and getting dark. I was waiting for a bus to go home, standing behind a tree for protection from the wind. I had recently lost a friend to AIDS. From whatever measure of intuition God had given me, I knew suddenly and quite certainly that I also had AIDS. I stood behind the tree and cried. I was afraid. I was alone and I thought I had lost everything that was ever dear to me. In that place, it was very easy to imagine losing my home, my family, my friends, and my job. The possibility of dying under that tree, in the cold, utterly cut off from any human love seemed very real. I prayed through my tears. Over and over, I prayed: "Let this cup pass". But I knew. Several months later, in April, the doctor told me what I had discovered for myself.

Now, it is nearly a year. I am still here, still working, still living, still learning how to love. There are some inconveniences. This morning, just out of curiosity, I counted the number of pills I have to take during the course of a week. It came out to 112 assorted tablets and capsules. I go to the doctor once a month and find myself reassuring him that I feel quite well. He mutters to himself and rereads the latest laboratory results which show my immune system declining to zero.

My last T-Cell count was 10. A normal count is in the range of 800-1600. I have been fighting painful sores in my mouth that make eating difficult. But, frankly, food has always been more important to me than a little pain. I have had Thrush for a year. It never quite goes away. Recently, the doctor discovered the herpes virus had gotten hold of my system. There have been strange fungal infections. One was on my tongue. A biopsy caused my tongue to swell and I couldn't talk for a week making many of my dear friends secretly thankful. A way had been found to shut me up and they all reveled in the relative peace and quiet. Of course, there are night sweats, fevers, swollen lymph glands (no one told me they would be painful), and unbelievable fatigue.

When I was growing up, I literally detested grubby, down-in-the- dirt sorts of work like changing the oil, digging in the garden, and hauling garbage to the dump. Later on, a friend, who was a psychiatrist, suggested I should accept a summer job at a lumber camp in the Northwest. He chuckled with sinister glee and suggested it might be a constructive emotional experience. This last year has been that constructive emotional experience I had avoided. Parts of it have been grubby and down-in-the-dirt and other parts have been life-changing. I cry more now. I laugh more now, too.

I have come to realize that my story is not in any way unique, nor is the fact that I will most likely die within two or three years. Like many of my brothers and sisters, I have had to come to terms with my own death, and the deaths of many of those I love.

My death will not be extraordinary. It occurs daily to others, just like me. And I have realized that death is not really the issue at all. The challenge of having AIDS is not dying of AIDS, but Living with AIDS. I didn't come to these realizations easily and, unfortunately, wasted precious time caught up in what I thought was the tragedy of my impending demise.

I still have a difficult time when someone I love is sick, in the hospital, or dies. We have all been to far too many funerals and many of us don't know how we will be able to find any more tears for the ones we continue to lose. In a story published recently about a man who lost his partner to AIDS, the man says that after Roger had died, he thought that just maybe the horror was over: that somehow it would all go away and everything could get back to the way it once was. But, just as he starts to think the horror is over, the telephone rings. I am crying as I write this because I have a very vivid picture in my mind of my partner making those same telephone calls.

We all know about the discrimination, fear, ignorance, hatred and cruelty attached to the AIDS epidemic. It sells newspapers and most of us read the newspaper and watch television. But I think there are a few things we continue to neglect.

Jonathan Mann, Director of the World Health Organization's Global Program on AIDS, recently spoke in my city. The World Health Organization (WHO) estimates that at least five million persons are currently infected with HIV. They also believe that twenty to thirty percent of those persons will go on to develop AIDS. Some medical experts at Walter Reed Hospital believe all persons infected will eventually develop symptoms.

In Missouri, 862 cases of AIDS have been reported since 1982. If the WHO figures are applied, the number of those who are currently positive or who will go on to more serious symptoms is staggering. Our state
of health reports that an average of six to seven percent of all those who are voluntarily tested test positive for the virus. Our local and state health departments are preparing for an explosion of cases in the next few years.

We often neglect those who test positive (those who are seropositive), but have no symptoms of AIDS. It does not take much imagination to envision the fear and depression that can result from learning you are infected with the AIDS virus. And, then, there are the families and loved ones of those who are sick or infected who must struggle with the same fears and depressions, often without a whit of support.

There is a major myth I would like to dispel. When we approach the AIDS crisis our first inclination is to search about for money to throw at the problem. I don't underestimate the importance of funds for services and research. But money will not solve, by itself, the problems of suffering, isolation and fear. You do not need to write a check: you need to care. If you do care, and if you have some money in your account, the check will follow naturally enough. But, first, you have to care.

The head of our local health department was quoted recently saying she believes there is a conspiracy of silence on AIDS. She reports that of the 187 deaths in this area, not one has listed AIDS as the cause of death in an obituary. It appears this conspiracy of silence involves those who have AIDS, or are infected with the virus, as well as the general public which still seems to have a difficult time discussing the subject.

Why is it, for example, that many of those actively involved in AIDS support services are the ones who have lost someone or know someone who has AIDS? I guess it is understandable. People are afraid. Another part of my constructive emotional experience has been to learn the value of honesty and straightforwardness. It is time for us to lose a lot of that useless baggage we carry around. You know the stuff ? that green bag that carries my attitude toward this person or that, or that big trunk containing my notions on this subject or that. So much useless baggage weighing us down. It's time for a new set of luggage. All we need is a small wallet and in our wallet we'll carry the really important stuff. We will have a little card that says:

Jesus answered, 'Love the Lord your God with all your heart, with all your soul, and with all your mind'. This is the greatest and the most important commandment. The second most important is like it: 'Love your neighbor as yourself'.
And once a day, we'll open our little wallet and be reminded of what really matters.

Some time ago I had the opportunity to hear Bishop Melvin Wheatley speak. He addressed the difficulties the church has in discussing sexuality. He said (as best I can recall) that the church has difficulty discussing sexuality because it has difficulty discussing LOVE. And it has difficulty discussing love because it has difficulty discussing JOY. The AIDS crisis involves the very same issues. As a church, we have our work cutout, and it is going to be grubby, down-in-the-dirt work.

I think it is important for us always to make a special effort to concentrate on the heart of the matter: being a truly Christian people. Bishop Leontine Kelly said at the National Consultation on AIDS Ministries that we must remember there is nothing that can separate us from the love of God. I understand her to mean that absolutely nothing, not sexuality, not illness, not death can separate us from the love of God. You may ask, "What can I do?" The answer is relatively simple. You can share a meal, you can hold a hand, you can let someone cry on your shoulder, you can listen, you can just sit quietly with someone and watch television. You can hug, and care, and touch and love. Sometimes it's scary, but if I (with the Lord's help) can do it, so can you.

Back when I lost the first of my friends to AIDS, I knew that one friend, Don, had been sick. It seemed like he was in and out of the hospital with this and that and didn't seem to begetting any better. Finally, the doctors diagnosed AIDS. By the time he died, he had been affected with dementia and was blind. When his friends found out he had AIDS, many of us did not visit him while he was in the hospital. Yes, that included me. I was afraid ? not of catching AIDS ? but of death. I knew I was at risk and that in looking at Don I could be looking at my own future. I thought I could ignore it, deny it, and it would go away. It didn't. The next time I saw Don was at his funeral. I am ashamed and I know that none of us, even those with AIDS, are exempt from the sins of denial and fear. If I had just one wish, just one, it would be that none of you would have to experience the death of a loved one before you realize the extent and seriousness of this crisis. What a terrible, terrible price to pay.

"What happens", you may ask, "when I get involved and I come to care about someone and, then, they die?" I understand the question. The wonderful part, though, is to understand the answer. I serve on my conference's AIDS Task Force. At a recent meeting I was trying to listen to several threads of discussion all at the same time when a woman (and a dear friend) spoke up. She had recently lost her brother to AIDS. She said quite directly that she was always amazed to see me and to see how well I was doing. She said she had become convinced that I was doing so well because I had been open about my diagnosis and because of the support, love and care I had received from those around me. She, then, turned to me and said she knew her brother would have lived longer if he had been able to get that same support and care, if somehow he hadn't felt so isolated and alone. She was right and I have come to realize how precious that care and support, that love, is. It has literally kept me alive.

How many people do you know who have saved a life? I tell you I know quite a few. You may ask, "What did they do, save a child from a burning building?" No, not exactly. "Well, did they pull someone out of a river?" Again, not exactly. "Well, what did they do?" When so many are so afraid, they sit next tome, they shake my hand, they hug me. They tell me they love me and that, if they could, they would do anything to make it easier for me. Knowing people like this has made my life a daily miracle. You can save a life, too. That life may only be a few months, or a year, or two years long, but you can save it just as surely as if you had reached into the river and pulled out someone who was drowning.

In my early days when I first "got religion", there were a couple of topics which fascinated me: mainly those which dealt with the presence of Christ. One of these topics was the old debate about the presence of Christ in the Eucharist. Catholics, for example, believe He is actually and physically present from the moment the elements are consecrated. I was, also, quite taken with certain passages in the Gospels, particularly in Matthew where someone asks Jesus, "When, Lord, did we ever see you hungry and feed you, or thirsty and give you a drink? When did we ever see you a stranger and welcome you in our homes?" Jesus replies, "I tell you, whenever you did this for one of the least of these, you did it for me." And again, in Matthew, the statement that: "For where two or three come together in my name, I am there with them."

I was, and probably still am, a religious innocent. I still harbor a childlike desire to really see Jesus, talk with Him, ask Him a few questions. So, the question of when and where Christ is actually present has always been important to me.

I can tell you truthfully that I have seen Christ. When I see someone holding a person with AIDS who is crying desperately, I know I am in the presence of holiness. I know Christ is present. He is there in those comforting arms. He is there in the tears. He is there in love, truly and fully. There stands my Savior. Critics notwithstanding, He is here in the church, in the person sitting next to me in the pew on Sunday, in my pastor who has shared tears with me on more than one occasion, in the widow at church who is helping us to set up an AIDS caring network. And you can be a part of that.

But, finally, you will be called upon to grieve; yet, you will know you have made a difference, and you will realize you have gained more than you could ever have given. An old, old story really . . . about 2,000 years old.

I am reminded about a song recently released titled: "In The Real World". Part of the lyrics read: "In dreams we do so many things. We set aside the rules we know and fly above the world so high, in great and shining rings. If only we could always live in dreams. If only we could make of life what in dreams, it seems. But in the real world we must say real good-byes, no matter if the love will live, it will never die. In the real world there are things that we can't change and endings come to us in ways that we can't rearrange."

When I was asked to contribute to this Focus Paper, it was suggested that I try to make it a statement of challenge to the church. I have no idea if I've accomplished that goal or not. It sometimes seems that a challenge should not be necessary since we are dealing with the most basic and fundamental tenets of our religion. If we cannot respond to those with AIDS (at whatever stage) as Christians, what is to become of us, what is to become of our church?

In the book, THAT MAN IS YOU, by Louis Evely, the author writes: "When you think of all those poor cold hearts and the equally cold sermons that bid them perform their Easter duty! Have they ever been told that there is a Holy Spirit?the Spirit of love and joy, of giving and sharing . . .; that they are invited to enter into that Spirit and communicate with Him; that He wants to keep them together . . . forever, in a body; that that's what we call "the Church"; and that that's what they have to discover if they're really to perform their Easter duty?"

Evely also tells this story:

"The good are densely clustered at the gate of heaven, eager to march in, sure of their reserved seats, keyed up and bursting with impatience. All at once a rumor starts spreading: 'It seems He is going to forgive those others, too!' For a minute, everyone is dumbfounded. They look at one another in disbelief, gasping and sputtering, 'After all the trouble I went through!' 'If only I'd have known this . . .' 'I just can't get over it!' Exasperated, they work themselves into a fury and start cursing God; and at that very instant they're damned. That was the final judgement, you see. They judged themselves, . . . Love appeared, and they refused to acknowledge it . . . . 'We don't approve of a heaven that's open to every Tom, Dick and Harry.' 'We spurn this God who lets everyone off.' 'We can't love a God who loves so foolishly.' And because they didn't love Love, they didn't recognize Him."

As we say in the Midwest, it's time to "hitch up your britches" and get involved. The consequences of not caring, not loving are much too severe.

One final story. Soon after I had discovered I had AIDS, the most important person in my life brought home a small package of seeds. They were sunflowers. We lived in a small apartment with a tiny patio with a bare patch of earth - really more of a flower box than any sort of a garden. He said he was going to plant the sunflowers in the "garden". Okay, I thought. Our luck with growing things had never been tremendous, especially such large plants as pictured on the package in such a small plot of ground. And I had much more important fish to fry. I was, after all, dying of AIDS and I had never paid much attention to anything as mundane as flowers in a flower box.

He planted the seeds and they took hold. By summertime, they stood at least seven feet high with glorious, bright yellow blooms. The blossoms followed the sun religiously and the patio became a hive of activity as bees of all descriptions hovered relentlessly around the sunflowers. Out of row upon row ofapartments which were indistinguishable from one another, it wasalways easy for me to spot our patio with those great halos ofyellow towering high above the fence. How precious those sunflowers became. I knew I was coming home: home to someone who loved me. When I saw those sunflowers, I knew that everything, in the end, would be alright.

For those of you who do care and find yourself ready to make this kind of Christian commitment, I would like it very much if you could come to my house. We wouldn't do a whole lot. We would just sit on kitchen chairs, have some iced tea, and watch the bees in the sunflowers.


Terry Boyd, age 38, is the father of a 14-year-old son and was raised in Nebraska, Idaho. A Micro-Computer specialist working with a small Savings & Loan Association, Terry was formerly a Navy medic with part of his service years spent in Vietnam. Terry attended Mt. Angle Seminary College, a Roman Catholic college, in Mt. Angel, Oregon. He is a member of Lafayette Park United Methodist Church in St. Louis. His 100 year old local church is located in a rehabilitated area of the city with a substantial racial/ethnic minority and gay population. A member of the Missouri-East Conference AIDS Task Force, Terry is also a volunteer for St. Louis Effort for AIDS (a local AIDS service organization) in the area of data processing. Terry includes among his hobbies: food, photography, oil painting and calligraphy. Terry has indicated his willingness to correspond with anyone who has questions or comments about his paper.


Afterword

by Cathie Lyons

This month's Focus Paper by Terry Boyd provides the members of the AIDS Ministries Network with an opportunity to think about AIDS from the perspective of a person who has AIDS.

Terry mentions the challenge of living with AIDS and comments on what has been meaningful, life giving, and lifesaving to him. What is of particular note is that Terry highlights things anyone can do, such as: caring, being present, holding hands, embracing, talking, watching television together, sitting beside one another at church, not being afraid of another's tears and sorrow, visiting one who is in the hospital, going to a person's home, sitting on kitchen chairs, sharing iced tea and watching one of nature's miracles - flowers and bees doing what they've been doing for centuries, carrying forth the beauty of God's creation.

Terry goes on to say that what one receives through a caring relationship with a person who has AIDS is, in the end, even greater than what one has given. I have found this to be true as have many of you who are involved in AIDS ministries.

Terry, also, writes about the conspiracy of silence. I became aware of the pain pent up in silence, when, after I had spoken on AIDS at church consultations and workshops, parents (usually mothers) would come forward and ask if we could talk. In most instances, these mothers revealed they had a son or daughter who had AIDS, but had never talked with anyone about it: not with their pastors, with other members of their churches, or their dearest friends. Usually, the reason was the same: fear. Fear that they would not find acceptance or understanding. Fear that in saying a son or husband had AIDS would reveal he was gay or bisexual, or that it would be interpreted that way. Fear that in saying a son or daughter or loved one had AIDS would mean there had been IV drug use.

Fearful of people's attitudes, notions and judgments about sexuality and drug use, too many loved ones of persons with AIDS live in painful prolonged silence. Sometimes the pain of that silence is exacerbated by feelings of guilt, shame and embarrassment.

The UMC Resolution on "AIDS and the Healing Ministry of the Church," addresses the need to break down the walls of silence and fear in this way: "As a Church we resolve that churches should be places of openness and caring for persons with AIDS and their loved ones. The church should work to overcome attitudinal and behavioral barriers in church and community that prohibit the acceptance of persons who have AIDS and their loved ones."

There is soon to be a poster in the Health and Welfare Ministries office which reads: "If you have AIDS or if you are the loved one of a person who has AIDS, you are welcome here." It is a testimony to the importance of openness and caring and to the fact that all persons are welcome in the church and the offices which bear the church's name.

In the Leader's Guide for the video on The National Consultation on AIDS Ministries: A Healing Ministry, it is suggested that congregations develop "A Covenant to Care" statement. An example of such a statement is provided in the Leader's Guide. The statement is drawn from the UMC Resolution. It goes like this:

"As members of the United Methodist Church we covenant together to assure ministries and other services to persons with AIDS . . . . We ask for God's guidance that we might respond in ways that bear witness always to Jesus' own compassionate ministry of healing and reconciliation; and that to this end we might love one another and care for one another with the same unmeasured and unconditional love that Jesus embodied."

Thanks, Terry, for writing this month's Focus Paper. The honorarium which you turned down, saying it was honorarium enough to be invited to contribute, will be used to help cover the expenses of the AIDS Ministries Network which grows larger every week.

What's most important is that communication takes place. The Network is not only a vehicle of sharing and networking. It is a community of persons known by their willingness to carry one another's burdens and to celebrate one another's joy.


HIV/AIDS Ministries Network Focus Papers were published from 1989-2001 by the Health and Welfare Ministries, General Board of Global Ministries, The United Methodist Church, Room 330, 475 Riverside Drive, New York, NY 10115. Phone: 212-870-3909. FAX: 212-749-2641. email: aidsmin@gbgm-umc.org. Focus Papers, unless otherwise noted, may be quoted, reproduced and distributed with credit being given to Health and Welfare Ministries and the authors. These focus papers were written several years ago there some information is outdated.