As most of the reading world knows by now, I have a daughter
who is living with AIDS. She has written about it in a book and in stories
appearing in prominent places. She has been a columnist for the AIDS magazine POZ . One of her sisters has written
about it, as have I. Since my job is to write about what I think, it amazes me
that I have published so little about something that I drag around with me like
my shadow-sometimes visible, sometimes not, depending on the angle of the sun.
She told us she was H.I.V.-positive nine years ago, shortly
before she left for Minneapolis to once again withdraw from heroin. (This was a
few years before the protease inhibitors made a longer life possible for those
infected with this unholy and unmerciful disease.) When she first told us, I
had that stunned, punched-in-the-stomach feeling that turns you numb. That
state lasted many months. I told some of my good friends. I could see from the
look in their eyes that they could hardly tolerate what I was saying. Most
didn’t want to hear any more. One or two visibly squirmed and changed the
subject. I sent another friend a story in which my daughter revealed her
illness and her thoughts about it. This friend never acknowledged reading it. A
year later, she said, “Oh, yes-I should have responded, shouldn’t I?” She is
now an ex-friend.
Then I felt guilt. Maternal guilt. We who became mothers in
the early 60’s were raised on the idea that mothers were responsible for all
their children’s woes, as well as their joys. The quality of our mothering was
said to be reflected in their success in the world. If this was true, I had
clearly failed this child, failed about as badly as I could (unless I’d raised
an ax murderer). Although it was her choice to put herself in such danger, I
wondered if I hadn’t kissed her enough, guided her well enough, disciplined her
with the right degree of firmness and tenderness. Had I let my attention wander
from her needs? Was the divorce from her father when she was 2 responsible?
Should I have tried harder to keep her in touch with him-the elusive, non-parenting
him? Of course, I had always known this was a fragile child and had tried every
remedy to help her grow steadier. But all the tricks of the trade didn’t work.
As time passed, I managed to push the guilt into a corner
from which it rarely crawls out to bother me. I saw that there were other
factors in her life that affected what she did with her young adulthood: her
own temperament, her drug- and alcohol-abusing father. (It was certainly my
fault that I had chosen him to be the parent of my first child.) Eventually, I
managed to settle on the idea that I bore some responsibility for her illness,
but not all. I remembered how I had loved her, always admired her most
extraordinary life energy, and how hard I had tried to ease her fears of the
dark, her nightmares. I remembered how much I had treasured every poem she
wrote, every drawing she made. Whatever other judgments remain to be rendered
upon my head will have to wait until after my death.
“Living with AIDS” is not as simple as the phrase might imply.
My daughter has lost much time and strength to this disease and its minor
infections. It is not just that the medicines are complicated to take. They
have debilitating and exhausting side effects. They seem to work for a while,
then stop. New combinations must be tried. Despite the fact that AIDS, if you
are lucky enough to live in safety-net-rich Minnesota, is not so
life-threatening at this very moment, it still takes its toll on her days. But
she doesn’t tell me much. She doesn’t want me to think about it, so she tells
me good news and not bad.
Sometimes I want to tell a friend what she has said about
her last visit to the clinic, but I have found that most people never ask me
how she is doing. They would prefer it if I kept her progress downward along
this rocky incline to myself. I have only the Internet with which to discuss
T-cell counts, viral loads and the latest medicines and their side effects. My
computer lacks irony, humor and sympathy, but it does its job in other
respects.
In these nine years, she has been exactly the same person
she always was-full of feeling, rich in humor, high in style, original of mind,
very trying to those attempting to create order in her life, but very loving to
her family, friends, animals and the fellow she lives with. She smokes up a
storm. She still dresses in a way that says: “Look at me. Enjoy me.” She is no wilting flower. She is so alive that it
makes my skin tingle to think of her. Her spirit will never be bowed, whatever
this disease produces. She will fight back.
I know that other households have their secrets and
tragedies, too. I know that raising children to be whole and well, attempting
to protect them from the beasts that lurk everywhere (most frequently within),
is honorable work, even if the results are less than glorious. I have not
learned to “take one day at a time,” as my daughter would like me to. I am not
convinced that any sane person can really exclude the past and the future from
every moment of their lives. A.A.-speak helps those it helps, but it leaves me
cold. Instead, I have accepted that the visions I entertained when I held my
first newborn would have to be tempered by the reality at hand. I had wanted
her to have an ordinary life with an ordinary number of years, sprinkled with
its known pleasures, safe from extremes of hardship, free of excessive pain.
Those wishes will not become her biographical facts.
Sometimes I see her at age 7, running in the waves at Saint
Croix wearing only the bottom of her bathing suit, her long hair flying behind
her, her legs longer than her torso. She is high on the rolling
squint against the sun. I see her with the light on her shoulders, jumping and
splashing and calling me to join her. Right then, I wished I could preserve
that moment, keep her there at the
ever after.
Sometimes I look at my face in the mirror and see a creeping
grayness-something in the cast of the eye, in the slope of the cheek, in the
way the mouth sits in its place-that speaks of AIDS and my daughter. I see
those shadows on other people’s faces for other reasons. I know that it is only
life peering back at me.
