RH: Is "living your dying" a process that began when you found
out about your illness, or something you'd been thinking about
before then that finding out about the illness intensified?
JS: Dying was not something I thought about. When I started
my healing journey with AIDS, it was because I thought I could beat
AIDS, because I didn't want to die. I was diagnosed with ARC (AIDS-
related complex) back in 1985, and the prognosis then was three
years. And it wasn't until about three years ago that I started work
on this book.
In 1989, I got sick for the first time. I was a graduate student at the
University of Texas at Arlington, working on a master's degree in
postmodern French philosophy. Until that point, my strategy had
been denial, to ignore it, but I finally realized that my body was
changing, and that I was going to die. I couldn't imagine 'no more
me.' But I soon discovered that the best that medicine could do for
me then was to make me feel comfortable until I finally died. So I
turned to alternative medicine, and from there to one 'solution' after
another -- I believed that if I thought positively, I could beat AIDS; if
I became very spiritual I could beat AIDS, and so on. One of the
things this book is about is realizing that our salvational strategies
and formulaic pat answers are myths, and that if dying is the enemy
that we're all going to lose. So I'm asking readers to reexamine dying
in a new light, as part of living.
Three years ago, I was living in rural Virginia, and became very ill
again. This was the first time that I was really sick, when I was
'dying.' I couldn't walk out to the porch without fear of being unable
to get back inside. I'd been a chaplain at the AIDS ward of a Dallas
hospital, and had done a lot of 'conscious dying' work -- I taught
workshops, and had been with hundreds of people -- but none of
that protected me from my own fear. I had thought that it would,
that I'd beat death, face it as if it were a weekend workshop I could
go into and get it over with. That was a myth. I realized that I was
dying, and that I had to be honest about it, that I had a long way to
go if I was going to die with some honesty let alone live with some.
All of my intellectual certainty and spiritual bravado was rubbed
raw by that experience.
One of the ways I got honest was to realize that I needed better HIV
care, so my partner and I relocated, I started getting better
medication, and I started to improve. And as my health improved, I
became aware that the sense of life's preciousness I had found when
I was sick began to fade away as I got better.
And that's when I started to see dying as a chance to ask questions,
rather than an opportunity to find answers.
The great thing about dying as a spiritual method is that it will undo
you eventually. You can con death for only so long.
RH: But this isn't a fatalistic view.
JS: What I'm trying to do is dissolve the boundary we've
created between living and dying. In many cultures that boundary
doesn't exist; dying is an everyday, sane part of living. It's proper
and correct to have dying inform and enrich your life. But in our
culture, dying is the great taboo. AIDS may have stepped out of the
closet, but dying hasn't.
I don't want to say that dying is always joyous -- it's certainly not.
Dying is hell, dying is grace, it's joyous, it's painful, it's....everything
you can say about living, dying is. It's huge, it's not one simple thing.
And the book is certainly not a formula to make dying all light and
wonderful, or to grudgingly accept it. It's not fatalistic at all; it's
realistic. Dying is here -- but so is living, so let's how they inform
each other, how they're really two aspects of the same thing, and
how can we use dying to make life richer, fuller, more vibrant.
RH: And it's not just about our own dying, but about the dying
that everyone, including our loved ones, will experience. You include
several 'exercises' for imagining...preparing for those deaths.
JS: I think the exercises, or practices, are vital. I've been
looking for better words to describe them than "exercises," words
that don't sound so clinical, because they're really about imagination.
They're about using our imagination in ways to deepen our soul and
our spirit, to explore the lines that we've drawn around dying. They
can be painful at times, but I know of no greater way to get in touch
with myself, or with "God" or whatever you choose to call it, than
cultivate an awareness of the fact that I'm dying today, right now.
And so are you.
RH: Towards the end of the book, you discuss being in a
relationship and being mutually honest about dying.
JS: So many of us do not bring dying into our relationships at
all, which is understandable because of the great fear that we'll lose
someone we love. I quote Maya Angelou in the book, "I can accept
the idea of my own demise, but I am unable to accept the death of
anyone else. I find it impossible to let a relative or friend go into that
country of no return. Disbelief becomes my close companion and
anger follows in it wake."
It's so important for us to begin to cultivate that awareness -- not so
that anger won't follow in its wake. The point isn't to solve a
problem, or to inoculate us from pain. It's so we can live more openly
and honestly now, that we can touch a wider range of our experience
now. And isn't that what a relationship is about, trying to touch that
wider range of experience?
RH: But living your dying doesn't get in the way of living your
living.
JS: There's a risk that awareness of dying can become
compulsive or obsessive, a morbid fascination, but that's not how I'm
talking about it. Living your dying IS living your living. It's a
broadening of the boundaries of living to include dying as a part of
growing and aging. It's almost become spiritually incorrect to be ill
nowadays; everybody's always saying, "Oh, I'm fine." They're fighting
the tough battle agains their disease, keeping that stiff upper lip. I
really hope that in the near future, people will be able to feel the
experience of being ill honestly without shame.
RH: These are lessons that everybody has to learn, but the gay
community has had to deal with dying quite intensely over the last
fifteen years.
JS: The gay community has really been at the forefront of this
work. Stephen Levine, another conscious dying advocate, has written
several books on dying, and he says that he hasn't experienced any
other community, or learned of any other community in history,
where dying has been brought so much into consciousness. It takes a
great epidemic to do that, especially an epidemic that can be as slow
in individual cases as AIDS is. There was a time at the dawn of the
AIDS crisis when it seemed so fast, that everybody was dying. But
now, with new drugs and inhibitors, we've turned a corner and
people with AIDS have much better life expectancies. I wouldn't say
things are rosy, but we've turned some major corners.
Some people are surprised that I'm out talking about dying. They've
had to deal with it for fifteen years, and they say enough already. I
can understand that, and frankly, living my dying is not something
that I can do all the time. There are times that I just don't want to
think about it. And one of the things that AIDS does is that it forces
us to live with the reality of dying.
RH: You've lived almost eight years beyond your original
prognosis, but even if we found a cure for AIDS tomorrow, you'd still
be dying.
JS: Right. Even if they find some way to stop it in its tracks,
the damage that's already been done to my body makes me a lot
older. I feel like somebody in my sixties. But you're talking more
about the emotional level, and that's true, too. There's no way I can
undo what has been done to my body.
I've thought a lot about this, and talked with other people who are
thinking about what it's like to be a longterm survivor of AIDS, and I
think that an analogy with Vietnam is really useful. When the
American soldiers were airlifted out -- one day they're in rice
paddies, the next day they're in the United States -- the war might
have been over for them, but as we know from the vets who came
back, it wasn't really over. There's damage that continues
within the heart and the psyche. The war with AIDS won't end with
the cure, if the cure is found. It will continue in the souls of those of
us who have survived, and that includes those without AIDS who
have lived with us through this ordeal.
But living our dying isn't limited to the gay community, or even to
people diagnosed with terminal illnesses. You can wait until you get
that diagnosis, but you can also start to recognize your dying now,
when you're in good health. You're dying today.
