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Thoughts About Having AIDS

October 2001

"Being empowered by AIDS means learning the power of freedom, acceptance, honesty, and the value of time."

I wrote this essay in 1995, the year I was diagnosed with AIDS. I still have most of the same perspectives that I describe here. I more strongly recognize, however, the opportunity that HIV provides for emotional and spiritual growth. Many of us might not have had this opportunity but for HIV.

I have come to see how this spiritual growth requires both solitude -- for an awareness of it to develop -- and the practice of good works. The practice of good works -- like feeding the street people of New York City -- helps to control our ego as we get out of ourselves and involved in the service of others.

Since the essay was written, I have taken strides in the field of dating. For most of my life, at least in my personal sphere, I was paralyzed by the fear of rejection. Having faced my own mortality, I have shed many fears, including the fear of rejection (and perhaps the fear of death). Now fearless, I have had the guts to expose myself to dating (and this in itself could be the basis for a book).

Being a passionate person, in life and in work, it should not have surprised me that my sexual nature is quite present -- and passionate. In the past, I had been fearful of embracing my true sexual nature and, therefore, had been unable to completely enjoy it. We need to indulge our desires, to some extent, because they are such an important part of ourselves. And yet, we cannot fully be ruled by our desires.

AIDS has taught me to focus on the things that I can control -- my attitude, diet, the amount of rest I have, my choice of projects, and the purpose and meaning I find in life. Retaining health may be related to the amount of control we exert. Control of our ability to choose day-to-day activities or our long-range goals enables us to maintain our productivity and independence.

Control for persons with chronic and/or terminal illnesses is often related to their ability to make health-related decisions. Enabling patients to make these decisions may require doctors to become facilitators of health care. My doctor does not tell me what treatments to take. Because I prefer to make my own health-related decisions, he provides information about the benefits and side effects of drugs. This information is relevant for me to make appropriate decisions.

Control also includes forming the vision for our lives and investing them with purpose and meaning. We may create purpose and meaning in our life by contributing something to society and by developing intimacy with our family and friends.

Many people with AIDS become "empowered" by it. Being empowered by AIDS means learning the power of freedom, acceptance, honesty, and the value of time.

I have told most of my friends and acquaintances that I have AIDS. This has given me a sense of freedom, has shown me the power of acceptance and has provided ready support of people who love me. My sense of freedom stems from the ability to be myself. My disclosure that I am a gay man with AIDS affirms that I am not ashamed of who or what I am. I have claimed my self-respect even though others may reject me.

The freedom that I experience from having AIDS has also brought me peace. When I am peaceful and in solitude, I tend to gain, rather than to lose, perspective. When we focus on the details, we lose sight of the whole. As we enter a more peaceful state, we tend to be more compassionate than angry. Because I have been able to absorb the peace associated with solitude, I have moved beyond anger into compassion.

AIDS has also taught me about the power of acceptance: that when we accept our mortality, we often begin to live our lives. This does not mean that we are resigned to die, but that we desire to live a more complete and meaningful life.

I accepted myself as a gay man long before I knew I was HIV-positive or diagnosed with AIDS. I could do this because, since I was somewhat of a non-conformist, I could think critically about society's views about homosexuality.

Because I have accepted my diagnosis, I am free to work on the projects that give my life meaning. I have accepted my diagnosis because of my strong coping skills, those resurrected because of my having faced defeat in my life.

We can't expect life to be fair. Many things in life are uncertain. We cannot bargain with the universe. Our good acts cannot be traded in for a longer life or for a life without suffering.

Anger, frustration, self-pity or depression will not change the fact that I have AIDS. All of these emotions would subvert my ability to have meaning in life. They would deprive me of my chance to complete unfinished business. It may be just as easy to die happy as it is to die miserable. It all depends on whether we are able to change our attitude.

AIDS presents the opportunity to be more honest with ourselves, particularly about how to spend our precious time. As a result, we examine our hopes and dreams. Because I am aware that my time is limited, I more closely evaluate my priorities. Time, not health, may be our most valuable commodity.

With a diagnosis of AIDS, I am more honest with others. In our culture, we tell people what we believe they want to hear. Having AIDS has made it easier for me to tell people what I feel -- what I would like to say -- and ignore whether they will like what I say or whether they will accept or reject me based on my words. I have not reinterpreted my emotions, feelings and point of view to accommodate theirs.

Our pursuit of material things, prevents us from exercising our time in pursuit of more worthy goals. And the pursuit of things, will not necessarily bring us happiness. Happiness results from doing the things that give our lives meaning.

The pursuit of things deprives us of the solitude that helps us to get to know ourselves. Consumerism robs us of valuable time we might use to attend to our values, principles, and convictions.

We must be courageous and speak from the well of our conviction. The test of our conviction is our willingness to die for a cause.

AIDS has made me more aware of the importance of living and increasing my zest for life. Zest for life is about learning to live with passion.

Many of us with AIDS become more authentic and work on issues that require our personal transformation. We become more authentic when we see others as more human, enrich our communication with them, and repair our relationships with them. We become more authentic when we live our own lives, do what we want to do, reject the norms of our society, think for ourselves, and set our own priorities.

AIDS has taught me not to be threatened or afraid of my natural gifts, including the gift of intuition. Intuition includes the sense that one should do something at a particular time.

AIDS has made me aware that the universe is helping me to complete my "unfinished business," such as my writing projects. My insights are more profound, more clear and more frequent. My words flow more easily. Whether this is the "higher power" within me -- I do not know. I believe, however, that we all have a presence within us that is greater than we are. This presence is often released when our awareness is increased.

We are a culture consumed by a desire for things, for attention, for love and for sex. AIDS has allowed me to see that these desires detract us from our ability to live an authentic life. For example, our desire for attention and perhaps recognition may encourage us to be dishonest and tell others what they may want to hear. Our desire for love may cause us to be someone we are not. True love may be a desire to share ourselves with others and to receive what they have to give us, not to mould them into something we would like them to be.

To transcend the somber nature of having AIDS, I am learning to find the light within myself, maintain a positive mental attitude, develop my spirituality; and remain productive by writing.

AIDS has caused me to evaluate the role of suffering in my life. The challenge of suffering is to continue to let your light shine forth despite ill health. The integration of suffering into our human experience probably demands that we separate the mind, or spirit, from the body. Our spirit may be healthy, even though our body is debilitated. Although our body is debilitated, we can remain productive.

Making lifestyle changes to support health is really about loving oneself. Many people with AIDS mention their growth in self-acceptance and self-esteem, perhaps because they have finally learned what living is about.

Our most significant contribution may be the way we have walked our path: our ability to bring out the best in others, to get them to think more, and to inspire them to be courageous. But because we lead by example, our ultimate legacy may be the way we have treated others (has it been with respect?), the actions we have taken consistent with our convictions, and the attitude with which we have confronted the challenges of each moment and day.

James Monroe Smith was the founding executive director of the AIDS Legal Council of Chicago (1987), a post he occupied until April 1992. He has taught at the college and law school level. He is the author of AIDS & Society (Prentice-Hall, 1996) and Producing Patient-Centered Health Care (Greenwood Publishing Group, 1999).

Back to the October 2001 issue of Body Positive magazine.

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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