Voices

This issue of the Notebook focuses on the suffering of persons who have AIDS or who are affected by AIDS. We can scarcely pick up a magazine, newspaper, listen to a newscast, or talk show without reading or hearing something about AIDS. STAUROS, U.S.A. is devoted to challenging the problem of human suffering and we would be remiss if we did not address the suffering that is linked to AIDS. In that context, we may note that there are various approaches taken to the suffering related to this disease. Some religious groups take a more judgmental attitude and see it as a "just punishment" for sin. Others view the suffering of people with AIDS somewhat in line with the Jesus of John's Gospel; the Jesus who healed the man born blind. "Rabbi, was it his sin or that of his parents that caused him to be born blind?' 'Neither, answered Jesus: 'It was no sin, either of this man or of his parents. Rather, it was to let God's works show forth in him.' (Jn. 9:2-3)." Obviously there are several approaches to the suffering associated with AIDS, but our mission leads us to the compassionate, loving, non-judgmental response.

That Suffering Encompasses the Physical, Mental, Emotional, Psychological - The Entire Person. The physical suffering is obvious but we need to realize the very real suffering of being ostracized, of being segregated, of being set apart; the suffering of being treated as a modern-day leper. Our mission statement calls us to dialogue with those who suffer and so we need to hear from some of the persons who have AIDS or who are affected by it. We need to hear of their particular suffering.

James Griffith, C.P., works with The Foundation for Interfaith Research & Ministry. One of the functions of this organization is to minister to persons with AIDS, and to persons affected by AIDS. Jim asked three of the people with whom he ministers to write about their own distinct suffering. We present these three testimonies, edited slightly because of space requirements, but very much as the authors sent them to us.

Our first article is by Dianna. Her testimony reminds us of our obligation to be community, to "be with" those in need. She cries out for someone to understand, to empathize, to encourage, to "be there." our 20th century individualistic philosophy may cause us to be "me-centered," to renege on our responsibility as part of the community. Dianna reminds us that we are part of a whole, that we need to "be" for each other.

"It is now ten years into the AIDS epidemic, five tested HIV positive, three months since he died. For all practical purposes, I feel as though my family and I don't even exist. years since my husband

"There is very little discussion of the effects of AIDS on the uninfected; there is very little attention paid to those who, in a sense, suffer indirectly from this disease. AIDS is perceived as a disease of gay men and most of the attention is focused on that group. There has been very little inquiry into the effect this illness has on those who love and support those who are afflicted. When people with AIDS (PWAs) are labeled as homosexuals or LV. drug users, the fact that PWAs have families is often ignored. But we need to remember that they have mothers, fathers, wives, sons, daughters, brothers, sisters, lovers, nieces, nephews, aunts, uncles, friends.

"I have gone through all the stages of grief from beginning to end. I have done this over and over with each new phase of the disease, beginning from his testing HIV positive, to his developing full-blown AIDS, to his death. As the disease progressed, I mourned the loss of our life together, the loss of our hopes and dreams, hopes and dreams for both our own future and that of our children and our families. Yet none of that prepared me for the mourning that has come with his death. We have not only lost him but we have lost our support systems as well. We are survivors trying to make a reality out of what is a nightmare.

"The needs of persons like myself, my children, my family, are great. The straight community is not dealing with AIDS so there was no support for us there. But we did receive tremendous support when we removed our own homophobia. We were willing to take the risk, and, as a result, the gay community took the risk of accepting us. Thus we offered support to each other. Still, I was alone; I did not have AIDS; I am not gay; am not a male. I had other issues and needs which were not being addressed. I tried to get other women involved in a support group, but this failed.

"As women, we are traditionally brought up to be the caregivers, the fixers. But in dealing with this, I faced the challenge of a lifetime. This was an illness that, no matter how hard I tried, I could not make it better.

"There are fine lines drawn between hope, denial and reality. Hope said he could beat the odds and live until a cure was found. Denial said the AIDS virus did not exist in his body. Reality said he was going to die. Now I can only hope for a cure so there will be no more losses. There can be no denial because AIDS exists everywhere, not in just selected groups. The reality is that we all must be involved in supporting each other, whether we are infected or not. AIDS takes its toll on us all and survival hinges on support."

Our second article is by Amy. We need to point out that it does not benefit our purpose to discuss, condone or condemn premarital or teenage sex. Our purpose is to focus on the very real and particular suffering of this young woman who is HIV positive. Amy is angry and her question, "Why me?" is an angry question. Amy experiences the suffering of almost complete uncertainty, of never really knowing. We can all say that our futures are unknown, that our plans are uncertain, but we do have some assurance that we will start a new school year, get married, start a new job, celebrate Christmas, go on vacation. Amy can make plans for the future but she does not have that assurance. She has to live with the continual sense of not knowing, with the ever-present feeling of insecurity. This makes for a very special kind of suffering. How can we stand in her shoes? Can we feel some of that uncertainty?

"Only my immediate family was to attend my high school graduation. Yet, my great-grandmother from California knew how important it was to have family there, and she flew to Texas for the occasion. Who would have thought she would get off the airplane sick and be put in the hospital? The day I graduated was the day my grandmother was to have an operation. The family was asked to donate blood in her name to replenish the blood bank. I gave blood along with the rest of the family. The rest of the family received a card back stating what their blood type was; I received a letter stating I have the HIV antibodies in my blood.

"Looking back on this, I have to wonder. What if grandma had not come to my graduation? What if she hadn't gotten sick, hadn't needed the blood? What if I hadn't given my blood? I would never have known that I was infected until the later stage the stage of full-blown AIDS. I knew so little then. I didn't even know that HIV positive meant that I had the virus leading to AIDS.

"Why was I so ignorant? I was seventeen and I thought I was invincible. I thought that homosexuals, drug-users, prostitutes, hemophiliacs like Ryan White got AIDS. I knew I wasn't like any of those people. My peers even made cruel jokes about them, peers who also thought they were invincible.

"I later learned that I became infected from my second sexual partner. He had a past of which I was not aware, a past that included multiple sex partners, bi-sexual experiences, an experiment with needles. Those all put him in the high risk category. I admit that I was stupid and wouldn't listen to my friends who told me not to go out with him. I was young and I was in love; it felt important to have a boyfriend. He was important, all right; he was very important; he gave me this virus.

"I have felt great anger and frustration since I found out that I am HIV positive. I think that teenagers should be told much more about this disease, about this virus that can destroy their lives. Teenagers need all the facts and all the information they can get. Abstinence if, of course, the very best but some teenagers will be sexually active. I was on birth control pills; I thought having a baby was all needed to worry about. Now I may never be able to give life because of this disease.

"I believe that I could have avoided this disease if I had known everything I needed to know about it. Why didn't I know? Why didn't parents, teachers, the media, tell me? Is it because people are uncomfortable talking about HIV/AIDS, about a sexually transmitted disease? It is time to get over that discomfort and prevent more teenagers from becoming infected.

"I work with the AIDS foundation in Houston trying to educate young adults. I don't want others to feel the hurt and anger I feel because of this disease. I don't want someone else's dreams to be shattered. I don't want another person to feel alone the way that I feel alone. I need help though. There are too many walls for just one person to break down. I feel such frustration and it is difficult to describe how I feel. I just know that I don't want any other teenager with his or her life ahead to have to experience this frustration, and to have to ask this question Why Me?'"

Our third article is written by a person with AIDS. Louie's description of his suffering is poignant. His is the pain of abandonment and isolation. He experiences the suffering coming from the fears, the misunderstandings, the lack of knowledge about AIDS. Louie's words convey how he learned to live with and through the pain; they epitomize the reality and the denial, but they also bespeak hope. It is in his last sentence that Louie reveals that hope and his source of strength.

"On January 6, 1989, my life changed to something that I never dreamed could be or would be. I was sitting in my doctor's office waiting on the results of some test. The doctor came in and told me that I had ARC (AIDS Related Complex) and that I should immediately start taking AZT. At that point, I began the feeling of being very lost and feeling all alone. My saving grace at the time was my lover and my job. My job seemed to keep me busy enough to keep my mind off of my health (my health was still good at this time).

"I made one major mistake in this period. I told my boss what was going on. She was supportive, but her bosses were not. In April of '89, I started falling into severe depression. This gave the company a reason to give me time off, with full pay, for as long as I needed. I thought this was great until I found out they were actually putting me on short term disability in preparation for long term disability.

"In continuing with the depression, I never dreamed that I would ever be okay again. I felt totally helpless and hopeless and just could not do anything for myself. I ended up in a rehabilitation hospital which I could not deal with, they were crazier than I was. I lived there for about two weeks until I couldn't take it any more. When they told me that electric shock treatments were the only thing left to do, I decided I had to fix myself. I would not wish something like this on my worst enemy. Around September, I began coming out of the depression, but still had to deal with a major problem that I had been avoiding all along. What was I going to do about the aids?

"In November, I tried to return to work, but with management having their little plan, I was forced to take the Long Term Disability. Now I had another issue to deal with. My ego was so bruised that I couldn't return to work, it was almost too much to handle. I felt inferior, not good enough, envious of others, and just totally useless. I also felt that feeling of defeat. But all along my health was holding up. Another piece of the vicious circle was a big cut in salary being on LTD. Worrying about finances can be as devastating as many other things. I was also seeing a chiropractor and an acupuncturist, which all had to be out of my pocket. This seemed to keep me going. I was grasping for anything that would give me hope and peace.

"Since then, I have had my share of PCP, MAI, CMV (HIY+ opportunistic infections), staff infections, and various other little problems. It is still very difficult at times to deal with the physical and emotional pain, and the pain of seeing my friends suffer and die. But we must go on, with my faith in god and my hope, life will continue."