‘Living With AIDS’ Is Not as Simple as It Sounds

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


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 water. Her eyes

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 water‘s edge, leaping into the turquoise sea

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. ‘Living With AIDS’ Is Not as Simple as It Sounds