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Why I Have Hope

Spirituality Column #1

November 1995

Eleven years ago, I was terminally ill with AIDS, Kaposi's Sarcoma and lymphoma. Today, I am HIV-positive and asymptomatic. The KS and lymphoma have been in remission for over a decade. Hope and faith have been the foundations of my survival. And I find that I can't keep the hope unless I give it away!

So this column is about hope for living with HIV and AIDS. Hope is a spiritual issue, but creating hope can be a very practical task.

Hopelessness is certainly a natural and normal reaction to a diagnosis of HIV or AIDS. That's how I first reacted. Hopelessness happens when we feel helpless to do anything about our situation. Hope happens as soon as we begin to discover that there is a lot we can do to help ourselves. Hope is active. Despair is passive. Hope happens when we take responsibility for our lives, and take action. Action produces hope. So I want to explore here, and in subsequent columns, ways in which we can take action in living with HIV and AIDS. Faith can inspire us to the action that produces hope. Believing that God loves you, just the way you are, can inspire you to take the best care of yourself.

I first got sick with what we now know as HIV infection in 1982. For the next two years, I spent much of the time lying around my home, extraordinarily sick, and extremely hopeless. I found it hard to do anything that might help myself. The less I did, the more I sunk into despair.

Then I was diagnosed with AIDS, Kaposi's Sarcoma and lymphoma in April, 1984. I was told I would not live to see 1985. This was a time when there were no treatments and no prophylactic drugs, and people with AIDS died quickly. If ever there was a reason to feel hopeless, it was during this period. The medical world could offer no hope in those days. But my faith did. The terminal prognosis snapped me to attention, and my faith kicked in.

My faith called me to action. I realized that if I was going to have any chance of survival, I had to stop lying around depressed, and get to work doing the work of healing. And because I believe that God loves me, I believe that God wants me to do everything I can to create the conditions for God's healing touch to work in my body.

In preaching the Easter sermon two weeks after they told me I was terminally ill, I said that if God is greater than the death of Jesus on the cross, then God is greater than AIDS. God is a greater reality than AIDS. God did not give me this virus. God is with me in my struggle for healing and for life, empowering me to do all I can to live.

The doctors had told me the worst possible thing they could tell me: that I was going to die, within a matter of months, from what was perceived as a horrible, stigmatized disease. But I discovered that I could still dance! I could still laugh, I could still enjoy my friends, and I could still be joyfully alive. The Resurrection of Jesus Christ means that we can be fully alive even in the face of death! And so on that Easter, I tap danced through my sermon, and with each step I felt more hope, and more support from my church community.

The Christian faith also speaks of healing, and of miracles. I come from a very intellectual, skeptical religious background, and as a child I was taught that miracles were something that happened a long time ago in a place far, far away. But in the Metropolitan Community Churches, I learned that God is still in the healing business! My chaplain insisted that I hold onto the hope for a miracle of healing.

She also taught me that I couldn't just lie around waiting for God to zap me with a miracle! While that can and does happen, more often than not, miracles happen when we work with God, creating the conditions for the miracle to happen.

That paralleled what my physician taught me. She said that I should think of myself as her partner in medicine, that we are co-creators of my wellness. Even though there were absolutely no treatments in those days, she taught me that I could do a lot to prepare my body for healing, so that when a treatment became available, it would stand a better chance of working.

So I set about doing everything I could to create the conditions for healing in my body. There was practically nothing written about AIDS back then: no self-help books, no stories of longterm survivors. But there were books about people who had beaten cancers they weren't supposed to survive, and I devoured those books.

After much study, I put together my own wellness plan. This included good nutrition, vitamins, laughter therapy, meditation and visualization, prayer, regular exercise, educating myself, and doing volunteer work for and with other people with AIDS.

But most importantly, it meant practicing my faith. It meant focusing on my faith when I was particularly scared. It meant trying to pray with every breath, as I faced bone marrow biopsies and spinal taps. It meant holding onto the promises of God for abundant life, even in the face of death. And it meant taking that leap of faith to believe that a miracle could happen to me. AIDS hadn't been around very long when I was first diagnosed. So I figured "How do they know everyone's going to die from it?" If a miracle could happen, why couldn't it happen to me? Even though many people thought I was in deep denial, or at least suffering from dementia, I insisted on hope, on believing that I could survive this.

In April, 1985, I became patient number one on the first anti-viral drug trial for persons living with AIDS. The drug was called suramin. Within three weeks, all my Kaposi's Sarcoma lesions disappeared. After six weeks, biopsies were performed on my bone marrow (which had been full of tumors) and a lymph gland. On May 30, 1985, my doctor called and said that the drug had successfully suppressed the viral activity, my immune system had kicked back in, and both the KS and the lymphoma were in complete remission.

Unfortunately, the drug proved to be too toxic for further use in people living with HIV/AIDS. In me, it caused adrenal insufficiency, and severe neuro-muscular damage. Fortunately, my neuro-muscular damage cleared up after the drug trial was stopped, and the adrenal insufficiency is easily treated with cortisone.

Today, my cancers have been in remission for ten and a half years. I am HIV positive, but I show no evidence of disease. Eleven years ago, I was terminally ill with AIDS, and today I am HIV positive and asymptomatic. Miracles do happen! The first big step in making miracles happen is simply believing in the possibility. So why not believe miracles can happen for you? That's faith!

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