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FIRST PERSON / ORANGE COUNTY

AIDS Victim's Dying Days a Family Ordeal

October 28, 1994|JEFF BEAN | SPECIAL TO THE TIMES

SAN DIEGO — A 32-year-old man is dying of AIDS in my bed.

He's not my lover. He's my brother-in-law.

The bed is one that my wife and I usually occupy. But the disease has stripped 50 pounds from her older brother, Michael, and he now spends much of his time prone, with an intravenous tube dripping liquid through a catheter in his chest.

Michael hasn't been able to eat much lately. Nausea haunts him. Food often sickens him. Vomiting and chills visit. Dry heaves echo down the hall from the bathroom in the middle of the night.

For years, we have known Michael was HIV-positive. But it never seemed real.

Now we grapple with the scourge as it steals a loved one. The time is coming soon. Although we love Michael deeply and will miss him when he's gone, his temporary presence--and dire need for care and support--has put a strain on us.

Because their Ocean Beach condominium is too small to accommodate more than two or three people, Michael and his lover, Peter, are living with me, my wife, Therese, and our 2-year-old daughter, Hannah, in our 1,400-square-foot condominium.

Michael's mother and a sister from Massachusetts have flown out to stay with us. An aunt from Chicago was here not long ago. So was an aunt from New York. Another aunt is on the way soon.

Therese has decided to use her sick leave so she can stay home from her job as schoolteacher and lend her mother and sister help. Peter does the same after coming home from work.

They work round the clock, changing IV bags, disposing of needles in a special container for "contaminated wastes," administering medication and helping Michael in and out of the tub.

The telephone rings throughout the day like a school bell. Our two trash cans can't hold all the rubbish we now produce. The carpeted floor has become bedding for some. My makeshift dresser is the top of a desk in a loft where Therese and I sleep on a fold-out sofa. My starched shirts hang from a nearby piece of exercise equipment.

Mail is sometimes misplaced. Bugs have invaded the kitchen more than once due to the volume of new and interesting crumbs that are accidentally left behind. I had to fill my pickup truck with piles of ant-covered trash bags and take them to the dump after I forgot to put them out at the curb for the usual weekly service.

Making private telephone calls has come to be known as visiting the "phantom tollbooth," a stairwell to the garage where we go to speak without interruption. We refer to the kitchen as a restaurant that's always open.

We're getting tired, but tell jokes to lighten the mood. We take walks. We talk about current events. Or rent movies.

Still, Michael's mother wished last week for a chance to take two or three days and fly back to her 11-year-old son, who thinks she won't be home for his birthday in December.

And on Monday morning, Therese and I discussed whether I should take Hannah away immediately if the end is violent and disturbing.

*

How much longer can it go on?

One doctor said at the most, two weeks. Michael's been with us for almost six.

Hannah must innately understand what's happening.

The usually rambunctious girl turns tender and careful when moving near Michael's frail body. She offers him stuffed animals. He smiles.

Will she remember Uncle Mike when she's older?

Michael has taught us about dignity, sharing and laughing. No book, magazine, movie, poem, friendship or assignment has ever come this close to revealing AIDS.

I remember wincing in the late 1980s when reading parts of "And the Band Played On," a groundbreaking tome on AIDS by Randy Shilts, a journalist recently claimed by the disease, and whose gaunt face appeared on a television interview before his death.

Words on paper, though, can only convey so much, and can't wake you at 3 a.m. and make you wonder how much longer somebody might survive. Televisions can be turned off with the push of a button.

A good day for Michael is the ability to shuffle down the hallway and sit on the sofa for maybe an hour.

A bad day is full of shivers that rack his torso and shake the bed.

Michael's mind is sharp, but his eyes sometimes appear dull and distant. He has trouble walking because his feet hurt. His once muscular calves are as thin as broomsticks. His boxer shorts billow over his emaciated thighs.

He rarely complains and is appreciative of simple things done for him, like help shaving or combing his hair.

"How is your day going?" he asked me one morning.

I commented on an arrangement of red gladioli on the dresser, their flowers in full glory.

"They're beautiful," Michael said.

My wife's family is frightened by his condition, but emboldened by the chance to be with him and to help him.

But my parents, both of Midwestern stock, are uncomfortable talking about subjects like AIDS.

My 82-year-old grandfather, whom I recall walking to night church services during snow flurries, didn't have much compassion when word of Magic Johnson's HIV status got out. Look at all the sexual partners he had, my grandfather said.

My grandfather doesn't know what's going on in my home.

Someday, I'll tell my mother and father. Maybe they'll understand.

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