thought I'd be focusing this
month on the Lark Lands
treatment workshop spon
sored by the Vermont People
with AIDS Coalition on December
12th. But I was kept home from
Montpelier last Thursday by a
nasty stomach ailment, so I missed
the jamboree. I thought a good
way to find out what happened,
not only for myself, but for any
other interested absentees, would
be to invite those who attended to
report their take on the event in
the space of this column. I will
surely ferret out some opinions in
the course of things, but I warmly
encourage anyone with something
to say about the workshop to
write, e-mail or phone OITM with
your bead on this hotly debated
movement in HIV/AIDS treat-
ment management. By reflecting
on the broadest possible range of
opinions, it seems to me, we can
find the best path of positive
change. It is lack of discussion that
has created a rift between consum-
ers and providers of HIV and
AIDS treatment in this state, and I
hope that you will help to move
us all forward by speaking up.

Besides, it's the holiday sea-
son, and I don't feel like being
scrappy. So I thought I'd regale
you with a lighter tale of space.
Space, that is, as it relates to HIV.

Since testing positive for
HIV a year and a half ago, my life
has undergone a phenomenal
cycle of shrinkage and growth.
Not only practically and psycho-
logically, but spatially as well.

By practical and psychologi-
cal shrinkage, I mean an implosion
of my attention and concern to the
state of my health, to the immedi-
ate future of medications and po-
tential treatments and, not least,
the scoping down of my ambitions
and plans to allow for a possibly
shorter and certainly much more
complicated life. None of this sur-
prised me particularly, though an
HIV positive diagnosis is obvi-
ously a bitter pill to swallow.

The thing for which I was

     
     
     
     
       
 

  
 

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wholly unprepared, however, was
the spatial effect of the news. My
lifestyle was already fairly lean,
having just moved to Manhattan
from San Francisco, I was provi-
sionally staying with a friend in a
tiny apartment. I was looking for
(and not finding) work in an un-
familiar city and I was totally
broke. The physical territory over
which I felt some sense of owner-
ship and control had boiled down
to a couple of suitcases and my im-
mediate person. I was already
making radical adjustments psy-
chologically to deal with my new
situation, to feel in control of my
life, when the shit really hit the fan.

Suddenly, the well-mean-
ing friends and family to whom I
had naturally disclosed my diag-
nosis laid siege to my mind. Any
boundaries of privacy which I had
hitherto taken for granted, and
indeed depended on for peace of
mind in my tentative situation,
were suddenly nullified. My
sexual behavior, my emotional
well-being, my physical health
were opened up for scrutiny, criti-
cism and, worst of all, prescriptive
advice. I found myself shrinking
from those who knew me and
whom I loved. Not because I was
ashamed of being HIV positive,
but because I couldn't afford the
constant infiltration and intrusion
into my psyche.

.As human beings, we all
need some space of our own,
whether it be a physical place or
just some compartment of our
minds, to which we can retreat in
times of crisis to take stock, to fig-
ure out for ourselves what we
must do, what we want to do. This
was the space that I desperately
needed when I got my diagnosis,
and this was the space that knowl-
edge of my diagnosis amongst my
friends threatened to annihilate.

l Privacy and autonomyare
the first casualties of HIV, and
their loss is grievous, representing
a collapse of one’s sphere of con-
trol, a loss of personal space. Any
attempts I made to assert my right

15,

  

 

to personal privacy after my diag-
nosis were branded by my friends
as secretive and indicative of ”de-
nial." It is typical of a Western
medical sensibility, I suppose, to
focus on disease as a purely scien-
tific phenomenon, to ignore the
individual, to dismiss the soul.

It was only when I retreated
to Vermont, nine months later, be-
reft of nearly all possessions and
relationships, that I began to find
some space in which to think for
myself, to decide how, or whether,
I wanted to live. For some of us,
we must lose everything to see
what we need. ‘

_Finding this space was a
slow process. It began with a bed
in the psychiatric ward at Fletcher
Allen, where I was mercifully left
alone for two weeks. On checking
out, I moved into a small room at
the Wilson Hotel, where I stayed
for two months, nursing a fragile
sense of independence and cau-
tiouslyinvestigating treatment of
my HIV. I was then able to secure
a small apartment in the old North
End with a HOPWA (Housing Op-
portunities for People with AIDS)

‘Certificate. _

As my living quarters ex-
panded, so did my ability to deal
with my condition. I am deeply
indebted to my case- workers at
Vermont CARES and COTS (the
Committee on Temporary Shelter)
not only for facilitating my reen-
try into "normal" life, but for hav-
ing the profound sensitivity not to
pressure me to take any particu-
lar course of action. They recog-
nized that HIV, or for that matter,
any serious illness, afflicts the soul
as well as the body.

The last chapter in my story
of space is being played out at the
Vermont CARES House at Fort
Ethan Allen. With my lover, whom
I met in an HIV positive support
group, I've moved into one of the
building's two-bedroom apart-
ments. At first,because the setting
is so beautiful, I almost felt guilty
for being here. But then Ilrealized
what Tim Palmer/the Executive
Director of ‘Vermont’ CARES
whose vision created this house,
already knew: that space is medi-
cine. +

Living with HIV is truly a
full-time job. Particularly as new
medications and strategies of
treatment are being developed,
those affected must constantly
take stock of a tremendously’ com-
plex world of scientific data and
make highly individualized deci-
sions as to how to proceed. t

Now I sit on my couch and
look out on the fields of Fort Ethan
Allen, watching the clouds move
across the sky and the cars slide
quietly by in the distance, and I
chart. a new course for my life.
There is room here to lay a great
many things out, and I need ev-
ery square inch of it.

I'd like to wish everyone in
the HIV/AIDS community all the
best for the coming year, and to
thank you, from the bottom of my
heart, for the space and light and
life that I've found in Vermont.

OUT IN THE MouNTAINs — JANUARY 1998- 19

Susan McKenzie MS.

Quechee

Montpelier

802 295-5533

Licensed Psychologist-Master

Experienced therapist specializing in the individual and
relationship issues of Lesbian. Women and Gay Men

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