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.
She said I should think of myself as her partner in medicine; we are
co-creators of my wellness. Even though there were no treatments, she
taught me I could do a lot to prepare my body for healing, so when a
treatment did become 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. My wellness plan included good nutrition, vitamins, laughter,
meditation visualization, prayer, regular exercise, educating myself and
doing volunteer work at a local AIDS organization. Making survival a full
time job didn't give me time to sit around depressed.
With the help of caring friends and health care providers, I soon
discovered that I could still dance! I could still laugh! I could still
enjoy my friends and my life. I could still be joyfully alive, even with
AIDS and cancer.
I have found there is hope even in facing death. When I was close to
death from AIDS complications, I was amazed at how my hope and faith gave
me courage. Sometimes hope in facing death comes from what a person
believes about life after death; sometimes it is simply the expectation of
release from pain and suffering.
Shortly after my "terminal" diagnosis, my therapist taught me
the Native American saying, "The quality of life is not measured by
the length of life, but by the fullness with which we enter each present
moment." This, too, gave me hope: I learned to live in the moment,
and to use each moment to improve my chances of survival.
Living and dying with HIV/AIDS can be an experience of loneliness and
despair. I know that experience can be transformed into a life of hope,
through empowering those of us living with HlV/AlDS to be actively alive
until we die. This creates hope, even when life seems hopeless. What
greater gift can a caregiver offer?
Rev. A. Stephen Pieters, B.S., M.Div., D.Min. (Hon.) is the Director of
AIDS Ministry of Metropolitan Community Churches worldwide and has a
column in "The Body" on the internet at www.thebody.com/pieters/revpiet.html.
and feel despair.
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