Being Alive 1993 Nov 5: 21
So, you've tested positive for HIV, or you actually have AIDS; me,
too! I was exposed in the late 1970s and, when I tested HIV+ in 1985,
almost everyone portrayed HIV as a terminal disease which no one
survived; 100% fatal. This message was communicated by the media,
physicians, other caregivers and persons with HIV themselves. Sadly,
this fatalistic message hastened the deaths of thousands and is still
believed by most people today in 1993. This message is false. HIV is
survivable. There are many long-term survivors of 12-15 years who
remain healthy. I don't have all the answers, yet I'd like to share
with you some ideas on how to be a long-term survivor. Survival yours,
mine, ours. Listen up!
Decide Whether You Really Want to Live
"Of course, I want to live," you respond. "Wouldn't anyone?" In my
experience... no. In fact, some people are relieved to have HIV
because it absolves them of taking responsibility for their lives. It
validates being a "victim." The foundation for HIV survival is a
conscious choice that life is precious. This requires some deep
self-examination. The will to live is a powerful force. Alone, it does
not guarantee survival, yet it empowers the possibility for survival.
Without the will to live, you are probably not going to survive HIV
(or cancer, heart disease, etc.). If this seems harsh, reach deeper
inside, ask yourself what's true for you. Life isn't fair it's not
fair for the skeletal children of Somalia, either. Can we hold these
children in our hearts? Can we find meaning and purpose amidst so much
pain? Do you really want to live? No one else can answer these
questions for you.
Learn about HIV
The information is available. It's your responsibility to get it.
There are many sources of good information, e.g., books, medical
journals, HIV newsletters, the resource library of your local AIDS
agency, HIV seminars, weekly newspapers like the San Francisco
Sentinel (if you are heterosexual and homophobic, get over it and read
the gay/lesbian press where cutting edge HIV information appears). If
you live in or near West Hollywood, A Different Light Bookstore
carries more than 100 titles on HIV. Read some of them! Talk to your
physician, talk to other people living with HIV, particularly
long-term survivors. I've been amazed over the years how little people
with HIV know about HIV. Hey, it's your life! HIV is survivable but,
if you don't care enough to do some homework, why should anyone else
care? Wake up! Learning about HIV will support your ability to make
knowledgeable treatment decisions. Learning about HIV supports
self-empowerment. It's the next step after deciding you really want to
live even if you're not 100% sure you want to live.
Create a Partnership with Your Physician
Your relationship with your health care provider is crucial. Your
doctor can be a tremendous support or a major negative influence. Ask
yourself some questions: Does my doctor care about me? Does he/she
have a compassionate heart? Is my doctor knowledgeable about HIV? Does
my doctor encourage me to learn about HIV? Does my doctor answer my
questions? Does my doctor encourage me to share treatment decisions?
Does my doctor have an inquiring, open mind about alternative
therapies? Will my doctor support me medically and emotionally even
when we have honest disagreements? (Yes, it's OK to disagree.) If you
can answer `yes' to these questions, consider yourself fortunate
because you have a valuable ally to face the coming challenges. The
typical person with HIV cannot answer these questions `yes.' I am not
impressed by vast technical knowledge if physicians are unable to
connect with their patients at the healing level of the heart. Often,
much of their technical "scientific" knowledge turns out to be
inaccurate, anyway. Choose a physician with heart.
Make Peace with Ambiguity and the Unknown
HIV is a journey into the unknown. And the unknown is where our
deepest fears reside, particularly the fear of death. With delicious
paradox, the unknown is where our growth as human beings occurs. HIV
challenges us to examine our fears at ever deeper levels. It tests our
willingness to move beyond our conditional thinking and accept
ambiguity perhaps, even to embrace the unknown as welcome adventure.
It offers us the opportunity to know our own courage and the courage
of others. It is the realm where our hearts can open to the limitless
wonder of mystery. Too metaphysical, you say? Perhaps, but you are
going to die (maybe tomorrow, mundanely, in front of a bus). Little by
little, examination of our fears will free us to live creatively, will
enable us to forge our own passionate lives. I don't have dramatic
answers here; rather I share the questions with you.
Strengthen Your Immune System
With a strengthened immune system, it's possible to withstand HIV
infection. While there is no "perfect" health protocol (just as there
is no "cure" for HIV and may never be), there are proven approaches to
immune system health, for example: balanced nutrition without becoming
obsessive; quality multi-vitamins with emphasis on anti-oxidants like
vitamin C; acupuncture to achieve inner balance; Chinese herbs;
regular exercise; massage; some form of meditation; elimination of
parasites (flagyl worked for me; herbs can help); elimination of
alcohol, recreational drugs, caffeine, sugar and tobacco. Also, learn
about and consider experimental alternative therapies such as DNCB,
acemannan, bitter melon, Compound Q and others. I personally believe
DNCB shows much promise and needs to be studied in clinical trials.
The average physician has never heard of DNCB because it addresses a
different model of the pathogenesis of HIV. Do the research yourself!
Think Twice About AZT
Give your immune system a break! Scientists and physicians are not
unanimous in endorsing AZT and its nucleoside cousins, ddI and ddC. In
fact, the new NIH guidelines to physicians state: "Treatment with AZT
is no longer necessarily recommended for early HIV infection." This is
a significant break from the 1990 guidelines. The recent Concorde
Study demonstrated that, while AZT may have some benefit in delaying
disease progression, it has no benefit for survival. At the very
least, read about AZT therapy, talk with other HIV+ people and don't
allow yourself to be pressured by your doctor or anyone else,
including me. Explore your options and make an informed choice. I
believe that AZT therapy is not only ineffective, but actively harmful
to our survival. In my personal experience, the vast majority of
long-term survivors have never taken AZT. These are my personal
opinions and observations, not medical advice.
Get Involved and Serve Others
Why are we here if not to learn kindness and how to give and receive
love? Does God/Goddess/Great Spirit care about our accumulated toys?
How important are our "secrets"? Does holding on to "shame" feel good?
Does it serve anyone? Why are we so frightened of truth? Just a few of
the many questions of being human. All people affected by HIV are our
extended family (actually, all people are our family). We can get
involved and help create a more humane world for ourselves and others.
We do not have to become Mother Theresa replicas, only more fully
ourselves connected to the world we steward. Another personal
observation backed by numerous clinical studies is that long-term
survivors do not sit home and feel sorry for themselves. They
volunteer, take political action and discover purpose in their lives.
We can live wonderful, creative lives and inspire others to more
deeply touch their own hearts. We can make a difference!
These are some thoughts about surviving HIV. It requires courage and
an open heart to be fully human. AIDS, perhaps, makes a contribution
by dramatizing this challenge for us. I share the journey with you.
(Hap Stewart is a member of the Marin County AIDS Commission and a
long-time volunteer with the Marin AIDS Project.)