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Hope: The Most Caring Gift
by the Rev. A. Stephen Pieters
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
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
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
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?