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Hope at the Hospice

Spirituality Column #8

March 15, 1996

In spite of the fact that many people today are living long and well with HIV and AIDS (see Column #3: New Hope for the New Year), people still die from the complications of AIDS. As Christians, we are called to bring hope not only to persons who are newly diagnosed or living with HIV/AIDS, but to people who are dying. As a volunteer chaplain at an AIDS hospice, I have seen many people face death with hope, and this hope comes primarily from faith. As a person living with AIDS, I have been very close to death myself, and I have found that faith gives us everything we need to live with hope, even as we die.

One recent resident of the hospice slowly hemorrhaged to death. As his young life literally dripped away, all I could do was sit with him, holding tissues to his bleeding nose, and soothing him with talking, reading, and praying. His hope at this point came from his strong Christian background, and he reclaimed and grabbed onto his faith with grateful strength. And it worked: he met his death with a peace that would surprise many people.

As different residents of the hospice approach their death, I find myself asking again and again, what does it mean to have hope when facing death? For some, it means clinging to the promises of their faith. For others, it means an end to pain and struggle, and the coming of peace. For still others, it means living in blissful denial.

One resident talked about moving to the midwest to be with his lover. One of the first things he told me when I introduced myself was, "I'm not here to die." But objectively, he was dying. He refused all food (he said he couldn't keep anything down anymore), and he was no longer ambulatory when he arrived at the hospice. He was badly wasted, and in a great deal of pain. But he was "not here to die!" He had plans! I believe he knew on some level that he was dying. But something in him could not accept this, and his hope lay in dreaming of his new home with his lover. Who am I or anyone to take away that hope? Aren't we entitled to live with hope as we die, even if that hope comes from denial, or from flights of dementia?

Another man's legs have been so badly swollen and disfigured by Kaposi's Sarcoma that they look and smell as if they're rotting. The hospice staff have kept him as comfortable as possible, but his hope lies literally in leaving his body. That moment will be an end to his suffering. And in that belief, he finds hope.

Some people die without feeling any hope. I've seen people approach their deaths with enormous fear which no amount of either intellectual or spiritual discussion can relieve. My urge is to try and rescue them from this fear by nurturing some belief that their suffering will be over. But oftentimes, they cling to their fear as if that will defend them from the inevitable. It doesn't. And all any of us can do is to be with them in as loving a way as possible.

When I see a person die without any sense of hope, it makes me very grateful for my faith. I have seen over and over again how faith gives people hope and life, even in facing death.

Jesus says in John 11:25-26, "I am the resurrection and the life; those who believe in me, even though they die, they shall live; and whoever lives and believes in me shall never die." Through our faith in Jesus Christ, we are guaranteed eternal life. There is life after death. Our bodies may die, but through our faith in Jesus Christ, we believe that the essence of who we are will live forever.

I used to have a hard time believing this, even though I professed to be a Christian. My skeptical, 20th-century mind, accustomed to a culture of investigative reporting and scientific inquiry, could not buy the concept. If there really is life after death, why isn't there concrete evidence? As a result of my skepticism, death was the single thing I feared most about life.

Then God gave me an opportunity to face that fear. In October, 1985, I had been treated for six months with suramin, the first anti-viral tried against HIV (see column #1, Why I Have Hope). My KS and lymphoma were in complete remission, thanks to the suramin, but I was wasting away. I had no appetite. I lost about 25% of my body weight. I had no energy. I was sleeping uncomfortably about 20 hours a day. I couldn't stand up without blacking out. My whole body ached all the time.

The doctor finally figured out that I was suffering from adrenal insufficiency caused by the suramin. She called at 7:30 one evening after she'd seen me, and said I had to come into the emergency room immediately. "You're likely to be dead by morning. You need cortisone NOW!" I had my neighbor drive me in, and she dropped me at the emergency room door.

I was eventually put in triage, where all my valuables were taken away and I was hooked up to monitors. I remember being vividly conscious of everything that was going on around me, even though I had no ability to do more than blink my eyes.

The ER staff took vial after vial of blood, but kept delaying the cortisone my own doctor had ordered. One resident thought he saw a shadow in my lung x-ray, and wanted me tested for PCP. A doctor told him the shadow was my heart.

A nurse took my blood pressure, and told me it was 50 over 30. She suggested I say my prayers. I prayed with every breath.

As they were taking one more vial of blood, my blood stopped flowing, and someone said, "Pump your hand." I remember thinking, "Why isn't he doing what they're telling him to?"

Then I didn't care anymore. I was floating free of my body, and for the first time in a long time, I felt no pain. I felt perfect peace, the "peace that passes all understanding." I felt whole in a way I'd never felt before: I finally understood all those things I'd never understood about myself. I felt completely surrounded by love, just as if every person who had ever loved me was right there with me, holding me, and caring for me. I had been terrified of dying alone, and I discovered that fear is totally irrelevant. We are not alone, even in dying.

Then I was conscious of being back in my body, and I was angry. It had been so restful, so perfect, and now I was in pain again.

I came away from this experience no longer afraid of dying or of death. I know now that what awaits us after we leave our bodies is perfect peace, understanding, and love. There is nothing to be afraid of.

This is why I believe hope is possible even at the hospice. It is through faith, but also through experience, that I know hope can be a reality for people who are dying. Hope is theologically correct, even in facing death. Faith gives us the hope we need to live, even as we die.

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