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Hope: The Most Caring Gift

In AIDS caregiving, the most caring gift is hope. In my twenty years as a pastor and chaplain, and in my fifteen years as a person living with AIDS, I have repeatedly seen the strength, joy, and empowerment that hope brings. 
Through my work as a chaplain, I have come to realize hope is necessary for every person's life, whether we are living with a life-threatening illness, or working as Caregivers. Hope is important to our own self-care. Hope is also important in maintaining an environment of hope for those we care for. For all of us, hope is an essential ingredient to the quality of life, as long as life lasts. 
 
I survived AIDS, Kaposi's Sarcoma, and lymphoma back in the early 1980's, a time when few people survived AIDS beyond two years. First diagnosed in 1982,I lived through two kinds of cancer, hepatitis, CMV, pneumonia, Epstein-Barr virus, Valley Fever, candidiasis, a variety of fungal infections, herpes, shingles, adrenal insufficiency, neuromuscular problems, peripheral neuropathy, and wasting syndrome. My cancers went into remission in 1985 while on an experimental drug, suramin. I got well in 1986. With today's treatments, I now have an undetectable viral load, and a CD4 count that hovers around 900. I am "clinically well in all respects", according to my physician, Alexandra M. Levine, M.D.  

Hopelessness is a natural reaction to a diagnosis of a terminal or life threatening illness. Hopelessness happens when we feel helpless to do anything about our situation. Hope happens as soon as we begin to discover how to help ourselves. Despair is passive. Hope is active. Hope happens when we take responsibility for our lives, and take action.  

Dr. Levine gave me hope by inspiring me to take action. She made me realize if I was going to have any chance of survival, I had to stop lying around depressed and start doing the work of healing. My mission was to stay alive long enough for them to find a way to manage the disease.  

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