Surviving and Thriving with AIDS: Hints for the Newly Diagnosed Michael Callen, Editor

©1987 PWAC NOTE: THIS IS OLD NEWS, posted for historical research only. The medical information herein is extremely outdated!

AIDS, SPIRITUALITY AND RELIGION

HOMILY ON AIDS: LENT 1986
by Thor Wood

The story of Mary Magdalene is one with which most of us can identify, I suspect. This incident of Christ's forgiveness utterly changed Mary's life, starting her on a spiritual path, and bringing her into a lasting relationship with the Lord. And it is my experience with AIDS which has brought us not only closer to the Lord, but to a realization that only through Him will I find any measure of peace.

Those of us who have AIDS cannot avoid being under a heavy cloud, no matter how much hope and confidence we can muster from time to time. It brings with it no kind of certainty, for every case is distinctive--just as every person is in every way. God's timetable and itinerary for the rest of our journeys on this earth are unknown to us. After all, something like 20% of those who have AIDS are still alive after three, four, maybe five years, as long as the condition has been recognized. And that uncertainty we share with all those who have been diagnosed as having supposedly "incurable" diseases.

With that kind of a diagnosis comes all sorts of intense temptations: self-pity and guilt especially; self-doubt, withdrawal, self-centeredness and even various manifestations of ego-tripping. As was recognized long ago in psychotherapy, when a person is in pain, psychic or physical, it's very difficult to concentrate on anything else--especially on things outside oneself. Then there's the leper feeling--even when it is entirely self-produced.

In my case there is not one person who has shunned me in any way on learning of my situation. I am most grateful for that, and for the study which has shown that of all the AIDS people who have lived at home with families, (7% of whom even shared the same toothbrush), not one family member has contracted HIV through regular close contact such as sharing dishes, hugging and kissing. The virus may be contained in tears and saliva, but it has not been shown to be spread that way.

But fear sells itself so easily, which I find to be quite an index of our pagan society. Most of the media exposure on this subject has been based on fear, while hope and faith never make headlines. There were two stories about AIDS in The New York Times on March 14th. One of them, the one of fear, was on the front page; but the one of hope and encouragement was on page 24.

Health professionals will tell you how fragile HIV is--it dies in 20 minutes on a dry surface and is very difficult to grow in the laboratory--and then in the next breath, tell you about fairly elaborate sterilizing methods you can use in the bathroom or kitchen. The fear has become so pervasive, the term AIDS itself such a symbol, that I hesitate to use it.

I don't mind telling people that I have a very much lowered immune system, but it is very difficult to tell anyone that I have AIDS--the symbol is too strong, and I don't know what demons it conjures up in their imaginations. Then too, it's such an arbitrary category, set up when the diseases associated with it were very new, and the definition seems never to have been thought about very much. After all, if you have a reduced immune system capability, you may become prey to any number of diseases, including tuberculosis and ordinary pneumonia. But if you get a specific kind of pneumonia (known for short as PCP) or a particular form of cancer (KS) then you suddenly are pushed over some imaginary border and become one of "them," a statistic reported to the Centers for Disease Control in Atlanta, and you can hear the clock ticking loudly. But it's the same lousy immune system whether it was tuberculosis or PCP.

My own case may interest you. Knowing I was at risk, two years ago I volunteered to participate in a study sponsored by the N.Y. Blood Center, a study of nearly 800 men at risk, and probably the largest sampling yet undertaken. Every four months for the last two years I've given a sample of my blood, had a physical exam, and answered a questionnaire about my sexual and drug activity (if any!) and my general health. You may remember that it was last Spring that the test for the antibody to HIV was developed and in mid-July, I learned that I had had the antibody since at least May of 1984.

Now, everyone agrees that it's very hard--if not impossible--to know what being positive to the antibody should mean for a person. In my case, it certainly meant a completion of the transition to safe sex methods (which had been gradual for me), and occasional mourning for my own death. For example, I realized that certain activities which I enjoy, such as mountain hiking, I might be doing for the last time last summer.

Then about the first of September I started very gradually to feel worse and worse, both mentally and physically. I had an estrangement with my lover of 2 1/2 years and was feeling generally weaker, but I suppose I'll never know whether the depression contributed to the physical weakening or the other way around, or whether they were inextricably linked.

But I pushed myself relentlessly trying to get more and more done. I joined an AIDS Ministry Group at Dignity/New York (the gay wing of the Catholic Church), conscious that I might need for myself the spiritual strength we were building to share with others. By the 5th of November, I knew I was sick, but went to a conference in Vancouver thinking I'd be O.K. with some rest. On arriving back in New York, I nearly collapsed, but never suspected pneumonia. The only symptoms I ever experienced were shortness of breath and a general weakness--I felt OK as long as I was sitting down, and I had no idea pneumonia could be so sneaky. I've felt much worse with flu and some colds.

In the hospital, I was immediately put on an IV antibiotic and my recovery began. I was told that I would be completely cured of the pneumonia, but after a few days and a biopsy, I was told that I did have AIDS.

Since becoming sick I had the time for long daily periods of meditation, prayer and scriptural reading, and these plus marvelous support from family, Fr. Bernard Lynch, friends and co-workers, kept the diagnosis of AIDS from being traumatic. My spirits were in fine shape, and it was very encouraging to find that when I needed spiritual help, it was there for me.

Not everyone is so fortunate. After three weeks, I left the hospital feeling that time was on my side. After all, my recovery had been about as fast as could be expected. I had discovered that I was a fighter and was not going to collapse psychically, and that with just a little luck, I could probably hold out until an effective drug would be found. And I still feel that way--that with the number of drugs being tested now--one of which is said to block HIV from replicating, effective treatment is bound to be found, perhaps in only a matter of months or a year.

So I see my role as one of holding on, keeping my spirits up and my body in as good a shape as I can. In order to keep going, I proceed with hope and faith. If one has a choice with a disease between denial and despair, choose denial. Even a false hope is better than no hope. I'm not talking about alcoholism or other addictions, where denial is part of the disease. But with kidney disease, AIDS and other currently "incurable" diseases, it might be part of the solution.

When I got back to work, everyone commented on how well and rested I looked--and it was true: I had gotten a real rest such as I had not had for years, since even my vacations had been pretty hard paced. But almost immediately I was faced with pressures and tensions on the job, and they do make health more difficult. I entered an eight week experimental drug program with daily shots of HPA-23 (the "Rock Hudson" drug) but because of my schedule, the morning prayer and meditation period went by the wayside except for weekends.

One significant aspect of a spiritual program is worth noting: the more you do, the more are the rewards, and once it's established, you can call it up for some benefit even in passing or for very short periods of time. Something is better than nothing.

I've heard several PWAs stress that they don't wish to be referred to as "victims"--we don't feel like victims, and you wouldn't speak of patients of any other disease as victims. Nor am I very keen on speaking of certain groups who have contracted AIDS as "innocent"--I don't deny that they are, but it sets up distinctions which are not useful and which suggest judgment and guilt. Well, yes, if I hadn't chosen to cross the street, I wouldn't have been hit by the hypothetical truck, and if several years ago I had chosen to be celibate or had known that safe sex would be crucial, then I wouldn't have been exposed to HIV. But is all this necessary? I leave it to God to judge me; I don't need it from my fellow creatures, all created fallible.

I believe those most prone to going quickly after the initial illness are those who are alone--who give up. If there is a top priority for group or individual action, it would be to try to reach these people--the loners. It's a huge challenge.

Fortunately, most of us have stronger support networks than we realize--often but not always family (and I am blessed with the most wonderful family imaginable), circles of friends, people at work, and in various organizations (including Dignity and the Gay Fathers Forum).

Let me conclude by giving three pieces of advice, all of which are based on building for the future:

First, develop that network of support. Be a friend, keep in touch, join and cultivate to the extent which fits your capabilities. Help others, and no less important, learn to accept help from others.

Second, practice safe sex. Learn the enjoyments of non-genital sex, of affection. Doesn't it ever strike you as odd, maybe even wrong, that while we all know where, at virtually any hour of the day or night, one can find raw sex, but by and large (except for lovers and close family) we may not know where or how to find a hug or other overt signs of affection?

Third, develop your spirituality--both in worship and other public forums, but equally important in private and personal ways--through 20 to 30 minutes a day of prayer and meditation, reading of scripture and spiritual teachers from our rich heritage of the past and the exciting theological developments of the present. A developed faith takes time to grow.